Speaker Summaries (2019-2020)
Monthly Meeting December 2, 2020
Dr. David Catalano, Radiation Oncologist
Dr. David Catalano was our speaker for our virtual meeting on Wednesday, Dec. 2. He is a Board Certified radiation oncologist with forty years of practice experience. He received his MD degree at Loma Linda University in California and performed his internship and residency there also
Dr. David Catalano, Radiation Oncologist
Dr. David Catalano was our speaker for our virtual meeting on Wednesday, Dec. 2. He is a Board Certified radiation oncologist with forty years of practice experience. He received his MD degree at Loma Linda University in California and performed his internship and residency there also
- Three years ago a new era in radiation technology began.
- .Video Guided RT (Radiation Therapy): Every second of the treatment is guided; no longer blind for most of the treatment as in the past.
- MRI Linac; This is an MRI with a linear accelerator inside of it. The Linac captures the target every second and aims itself appropriately. The prostate (P) is moving due to breathing and the motion of the rectum which moves several millimeters every minute. There are no Linac machines, which cost approximately $10 million, in The Villages area but there are some in Florida.
- Dr. Catalano utilizes a Calypso machine. Two or three electronic chips are inserted into the prostate which generate radio frequency beams to the RT equipment. If the prostate moves, the radiation turns off.
- Later in his talk, Dr. presented a slide that showed a chip. The chip remains in the prostate after RT treatment, but becomes inert.
- This gives the ability to never miss and waste radiation. With the ability to never miss, radiation intensity can be increased and the number of treatments can be decreased.
- SpaceOar: The rectum is a problem because it touches the prostate and has been the ban of RT ever since Dr. started practice. There was a 5-10% problem rate with constant diarrhea being the main issue. SpaceOar is a hydrogel that is inserted between the rectum and the prostate and removes the rectum from about 75% of the radiation. The gel is a very important part of RT.
- Radio Surgery: This is the current state of the art and is radiation given in an ablation. This is a high dose that has a greater chance of cure in select patients. In practice, Dr. does not perform any procedures that have not been tested and proven safe and effective for at least 10 years.
- Current Options; Traditional RT took eight to nine weeks. Now with the current equipment, RT can be performed in 5 1/2 weeks (28 treatments) for certain patients and still for other patients in 2 1/2 weeks (5 treatments). This is not safe for patients with larger tumors. Part of the vetting process is to determine what conditions the patient has and determine what the options are. This is not for everybody.
- Radiation for Oligometastatic Disease (Five metastases or less): This is just emerging now. In the past, practitioners would not treat the prostate if metastases had occurred. Now offering patients with few metastases a potentially curative treatment.
- Anatomy graphic; Dr. presented a graphic of the P and surrounding organs. The P is close to the skin, an inch or less through the perineum. This allows the radiologist easy access to the gland.
- PCa Etiologies: Controversy in this realm. Previously thought that fat and animal fat caused cancer. Now the medical community thinks that milk causes cancer, but cannot prove it.. Specifically the protein in milk, with nonfat milk being the worst since it has more protein which is found in ice cream, cheese, and yogurt, but not in butter. He advises PCa patients to avoid milk and suggests milk alternatives, oat, almond, coconut milk.
- Forks Over Knives: Dr. referenced this video which is free on Netflix. The concept is that if you use your fork correctly, then you don't need a knife.
- 2001 Harvard Review: Men with highest to lowest dairy intake: 2x PCa risk and 4x metastatic or death risk.
- Vitamin D; Dr. recommends taking Vitamin D to patients; He takes 4,000 units daily in gummy form.
- Vitamins detrimental to PCa; There are several papers that present the negative aspects of Selenium, Vitamin E, Folate and B12. He presented a slide that showed the increased risk of taking each supplement.
- Definitions:
- PSA: Prostate Specific Antigen, blood test, normal 0 to 4
- DRE: Digital Rectal Exam
- IMRT: Intensity Modulated Radiation Therapy. Hundreds of Computer-planned x-ray beams on auto pilot.
- IGRT: Image Guided Radiation Therapy Typically images are taken pre-treatment every day.
- VGRT: Video Guided Radiation Therapy (His own terminology) Typically images are taken continuously during treatment.
- How to Diagnose PCa:
- DRE
- PSA
- Shape of PSA curve over time resembles a hockey stick in most patients. The shape is the same but the timing is different and related to the Gleason score. PSA > 100 normally means PCa has metastasised
- One can usually calculate the volume of cancer cells by dividing the PSA by 3. A 6 PSa would calculate to 2CC's of cancer. Infection of the P would be an exception to this rule.
- Comparing PCa
- Stage Group: I: Incidental or PSA only: II: Purposeful or abnormal exam or PSA; III: Tumor extending through prostate capsule; IV: Tumor outside the prostate area.
- Gleason Score: 3+3 low score; 3+4 favorable intermediate; 4+3 unfavorable intermediate; 3,4+4,5 high score; 5+5 very high score. The first number represents the most predominant pattern and second number represents the second most predominant pattern. There now are Gleason Groups 1 through 5 with 3+3 being number 1.
- PSA Level
- Minor Features
- Perineural Invasion
- Number of Cores Positive
- Extracapsular Extension
- Prognosis
- VERY LOW Risk (must have all)
- Stage I, Gleason 6, 1 or 2 biopsy cores only, < 50%, PSA < 10, PSA density < 0.15
- Estimated Life Expectancy: < 10yrs, observe, 10-20 yrs, Active Surveillance(AS) (6 month PSA, Biopsy 1 or 2 yrs.), > 20 yrs. AS or treat.
- Low Risk
- TI (T1 to T2a), Gleason 6. PSA < 10, Does not fit Very Low Category
- Life Expectancy: < 10 years observe, > 10 yrs. AS, radiation, surgery
- Radio surgery popular with this group
- Intermediate Risk (biggest group)
- Stage II, Gleason 7, PSA 10-20,
- Favorable: < 50% of cores involved and Gleason 3+7
- Treatment can include standard long course radiation, medium course radiation or very short course radiation (5 treatments), can also be treated with permanent or temporary seed implants
- Unfavorable (Gleason 4+3) Monotherapy not recommended; Combination can be radiation plus ADT or radiation plus seeds
- HIgh Risk
- Stage III or Gleason 8-9 or PSA >20.
- Very short term radiation not proven for this group. Combination therapy also required
- Very High Risk Group
- Stage III, or Gleason 9.5 to 10, or 4 biopsy cores with Gleason > 8.
- Life Expectancy; < 5 yrs radiation +/- ADT or observe, > 10 years radiation plus hormones or surgery + radiation
- VERY LOW Risk (must have all)
- Treatment Options
- Active Surveillance or Watchful Waiting
- Hormone Therapy (ADT) on average delays symptoms 3-5 years, never a cure and can cause harmful side effects, i.e. blood clots;
- Surgery: Dr. Catalano recommends it for healthy patients less than 60 years old. because it will be a component of surgery, radiation and hormone therapy
- Radiation: high cure rate for early disease; many different types of treatment; radiation with hormone therapy good for high risk disease
- Radiation Side Effects
- Fatigue
- Temporary Irritation: increased urine/stool frequency, bladder false alarms,
- internal scar tissue in older days 5-10% bleeding and diarrhea; now almost eliminated;
- SpaceOar hydrogel has significantly improved elimination of this side effect which many patients can utilize. All university centers, all proton facilities and many practitioners now use the gel and all insurances that Dr. C has come across now pay for it. Now these side effects are less than 1%
- Erectile Dysfunction: still an issue; Viagra types often work and are prescribed
- Comparisons of Treatments Across Different Risk Groups
- Dr. presented a series of busy graphs which showed the effectiveness of both mono treatments and combination of treatments across the various risk groups. These graphs are available at https://prostatecancerfree.org/ Go to the website and click on "Get the Study".
- Dr. Catalano's Comparisons of Surgery vs. Implants vs. Image Guided Radiation
- The bane of surgery is incontinence and impotence
- The bane of implants is dysuria
- The bane of radiation was rectal effects but have been pretty much eliminated because of the SpaceOar Gel.
- Radiation Cure
- 40 years ago when Dr. C began practice, radiation was not a good option. With technology advances it has unsurpassed cure rates, provides the highest quality of life and can be the least expensive (the 5 visit treatment procedure), and is all performed on an outpatient basis
- Dr. presented several slides which showed pictures of the various types of radiation equipment, scan images of prostate glands and graphs tracking the degree of prostate movement in seconds during treatment .
- SpaceOar Insertion: Dr. presented several slides showing how the one inserts the gel into the body using an ultrasound probe. He also presented MRI images showing the prostate before and after the insertion of the hydrogel. The gel dissolves in approximately six months and gives the practitioner 1 to 1 1/2 centimeters of push. The gel has also had a positive effect on bladder complications because the computer program can place the radiation into the gel itself. Practitioners would not be able to offer the super fast radiation without the gel. In Dr. Catalano's opinion, a patient should not be given the super fast radiation without finding some way to address the rectal issues and the SpaceOar now is the best way to do it.
- Questions and Answers:
- How long after RT is the immune system compromised? Talking about prostate radiation, the immune system is not compromised much. One way to measure the immune system's function is the blood cell count. White blood cells that fight infection do not drop much and red cells and platelets do not drop at all. Another way is to measure antibodies. Antibodies do not drop much at all. Regarding Covid-19, there is no increased risk of disease. Age and comorbidity determine the risk.
- How long after RT do patients experience fatigue? Without hormone therapy, the period is short, a couple of months. With seeds, approximately one year. If a patient is on hormone therapy with radiation, fatigue will remain much longer, typically five to six months after theri last shot.
- Does proton therapy have the same advantage as the LInac machine? No. Proton equipment uses particles that cannot go through an MRI magnet. Linac uses an X-Ray that is not impacted by a magnet and the images are refreshed every second or more.
- What diagnosis dictates the difference between the 28 day vs the 5 day treatment? Patients with a favorable intermediate Gleason, 3+4 are eligible for the 5 day treatment. Patients with Gleason 4+3 are not eligible for the 5 treatment option but can have the 28 day option. Dr. would also recommend 28 day treatment for patients with olgomastic cancer because RT will track down the tumors and treat them.
- After RT, do patients still have DRE's? Once a cancer is linked to a PSA level, DRE's have little benefit. If a patient's PSA went from 10 before RT to 0.2 after treatment, DRE has little benefit. Dr. is of the opinion that DREs are important for an annual physical because they can sometimes detect rectal cancer.
- If a tumor was detected many years ago by DRE but not treated until recently because of current problems, would that change the benefit of a DRE? If PSA goes down to near zero, that is more important than how the prostate feels. There could also be scar tissue. However, PSA may be replaced by other tests. There is a urine test that now detects cancer. DNA is excreted through either the prostate, bladder or kidney into the urine. It is $300 vs a PSA test of $50. Dr. C does not use it because it does not yet have a track record. DNA tests are like an on/off switch. It is either positive or it is not. PSA is a quantifiable measure. There are also blood tests that can detect cancer, often referred to as liquid biopsies.
- In your RT system, how many angles do you use and is it true that proton therapy uses only two angles from the side? The more angles used, the lower the dose per angle. From the dose that goes through the skin, the amount that reaches the prostate is one tenth. This reduces side effects. Protons can go through the skin without affecting it. They go through the skin at a fairly low level and then they stop. Few angles are used in order to not affect the other organs around. Another reason for fewer angles is that the machines are large and take a longer time to move. Fewer angles get the patient off the table more quickly.
- In SBRT and Cyberknife, there is some talk that they do not require SpaceOar. Your thoughts. That is a matter of opinion. The idea is that if the treatment is able to localize the prostate, then depending upon what the margin of error needs to be, the rectum may not be in play. It is possible in some patients that the rectum is not touching the prostate. Most of the Cyberknife centers that Dr. C is familiar with use SpaceOar.
Monthly Meeting November 4, 2020
Jan Manarite, Executive VP Cancer ABC's
Our speaker for our meeting on November 4 was Jan Manarite, Executive VP of Cancer ABC's. She is an award-winning advocate who has been educating patients, advocates and the general public since 2001. The entire meeting was a question and answer format.
Jan Manarite, Executive VP Cancer ABC's
Our speaker for our meeting on November 4 was Jan Manarite, Executive VP of Cancer ABC's. She is an award-winning advocate who has been educating patients, advocates and the general public since 2001. The entire meeting was a question and answer format.
- Disease Staging. There are different types of staging classifications in practice. PCRI has a "Shades" method where disease stages are assigned a particular shade of blue depending upon severity. The American Urological Association (AUA) and the National Comprehensive Cancer Network, (NCCN), an organization of 28 top medical institutions in the country, have their own. Whatever helps a patient understand his situation is fine, however, urologists and oncologist may not recognize certain methods such as "Shades".
- One individual who recently completed radiation therapy and is now on hormone therapy was concerned and uncertain about how long he should continue on such therapy. He is concerned with the side effects that cannot be seen.
- What can't be seen can often be measured.
- Heart: His father died at age 48 from a heart attack. The gentleman has an appointment with a cardiologist. Suggestion was made to have genetic markers tested for heart disease.
- Bone Density: He has also scheduled a bone density test. Jan advised that the "T Score" is the key measurement for bone density.
- ADT: His treatment is monthly injections of firmagon. This is possibly the least toxic of hormone therapy alternatives.
- Newly Diagnosed: This individual has a 5.34 PSA and a 3+4 Gleason.
- PSA testing should be from the same facility. This is important for comparisons to prior tests. Objective is to have apples to apples comparisons, There are different types of lab equipment which provide different readings from the same sample. Jan stated that the readings are not normally materially different. Whenever possible use the same lab, the comparison is more accurate.
- MRI; This man underwent an MRI in June 2020, but he did not state his PIRAD result.
- Radiation: The gentleman expressed a concern about radiation harming surrounding tissue. He did not know the size of his prostate. Jan emphasized the importance of knowing and understanding one's own records. The larger the prostate, the harder it is to avoid surrounding tissue. Jan gave him a reference to a radiation oncologist in his area that performs SBRT.
- Oncotype DX: This individual had taken this test and the results showed that he was in the higher range of results. Jan pointed out that he is compared to others that are lower risk like him, not the total PCa population.
- Sole attendee. He is currently consulting with Moffitt Cancer Center. He is not allowed to bring his spouse to the appointments. This is important to him because she often notices comments and information that he misses. Jan advised to take an assertive approach with the medical provider. Query if she can attend wearing a KN-95 mask or possibly teleconference using platforms similar to Zoom.
- Diet: This individual expressed concerns with diet change. I placed in front of my laptop camera the cookbook "Eat to Beat Prostate Cancer" by Dave Ricketts. This person had already obtained a copy.
- Tulsa-Pro: Trans Urethral Ultrasound Ablation
- This is a a recently developed form of therapy that uses real-time MR imaging and ultrasound waves to thermally ablate prostate tissue. Studies are ongoing, but the hope is that this therapy will be used for partial-gland ablation and that the real-time MR imaging will provide greater precision than its closest comparable treatment, HIFU.
- This procedure was mentioned but we did not have an in depth discussion. For an in depth discussion the following link is a video dated Oct. 17 with Mark Moyad and Dr. Martin Klotz, a renowned urologist performed on. Tulsa Pro Webinar
- Hot Flashes
- One attendee expressed a problem with hot flashes, although not severe. The man has had radiation but is not on ADT. Another patient suggested that possibly an estradiol patch could be helpful. Jan explained that they are sold under the brand name Vivelle Dot.
- Urinary Problems: A female attendee talked about a recent emergency room episode where her 85 year old husband had 1,400 CC's drained for his bladder. (Per my rough calculations, this is approximately 1.5 quarts of liquid.)
- The individual has an enlarged prostate. Jan advised to get a number for the size of the prostate. Large is too ambiguous.
- The attendee then read from a cat scan report performed at the ER. The report revealed peritoneal and pelvic adenopathy (enlarged lymph nodes) consistent with metastatic disease. This is not yet a cancer diagnosis.
- The cat scan report also stated a prostate mass. Cat scans can identify anatomy, size and shape, but does not see different kinds of tissue like MRI.
- No PSA was taken in the emergency room. The man had consistently taken PSA readings until the VA stopped paying for them. He has a PSA scheduled for 11th of November.
- The couple did see a VA urologist who performed a cystoscopy and advised that the patient either have BPH surgery or live with a catheter. The patient is currently taking FloMax and utilizing a catheter. The couple has scheduled an appointment with Dr. Richard Roach at Advanced Urology Institute.
- Jan mentioned TURP as a surgical procedure for BPH. I mentioned that Dr. Roach does a surgical procedure for BPH called Rezume, and that one of his partners performs TURP. (Regarding the partner, the info is incorrect. The partner performs a procedure called Green Light Laser.)
Monthly Meeting September 2, 2020
Dr. Bob Goethe
We had a virtual meeting on Wednesday, Sept. 2, and our speaker was Dr. Bob Goethe. Dr. Bob is an MD and Board Certified Anesthesiologist. He retired two years ago and currently lives in Citrus County. Currently he is a Medical Cannabis Physician. His talk will be on Medical Marijuana. He doesn't prescribe prescription drugs and his practice is not a pain management clinic.
Brief History
Dr. Bob Goethe
We had a virtual meeting on Wednesday, Sept. 2, and our speaker was Dr. Bob Goethe. Dr. Bob is an MD and Board Certified Anesthesiologist. He retired two years ago and currently lives in Citrus County. Currently he is a Medical Cannabis Physician. His talk will be on Medical Marijuana. He doesn't prescribe prescription drugs and his practice is not a pain management clinic.
Brief History
- The Chinese used cannabis approximately 3,000 years ago. Both the Egyptians and the Romans used it. Only in the last 100 years has it been considered a harmful drug.
- George Washington grew marijuana for medicinal purposes and in the mid 1800's it became a popular drug. From 1850 until 1937 cannabis was widely used throughout the US and could easily be purchased at apothecaries and general stores.
- In 1937 the head of the Bureau of Narcotics was successful in getting cannabis declared illegal despite objections by the American Medical Association in support of cannabis. During the Nixon administration, the Federal Government made marijuana a Schedule 1 narcotic, defined as a drug that has no medical benefit and a high potential for abuse. Some examples: heroin, LSD, ecstasy, methaqualone and peyote. This also stopped medical research of cannabis in the U.S., but not in other countries.
- Starting in the 1970's, Raphael Mechoulam, an Israeli organic chemist, began researching cannabis. He discovered that the plant contains chemicals called cannabinoids. The body has receptors that like these cannabinoids that go to receptors in the body, brains, lungs, intestines, nervous system, lymphatic system and immune system. Dr. Bob commented regarding examples of cannabis facilitating breathing in people with lung problems and relief for people suffering from Crohn's disease.
- The plant produces approximately 140 different molecules called cannabinoids that are similar in structure. The molecules have minor molecular differences, but have big impacts on how people react. The well known molecules are:
- THC which is psychoactive. Common effects: euphoria, relaxation, anxiety, short term memory impairment. If taken to the level just below getting "high", THC is an effective pain reliever.
- CBD which is non-psychoactive. Common effects: decreases negative side effects of THC, decreased anxiety, decreased short term memory impairment. It is an effective anti-inflammatory and effective for arthritis relief.
- If taken together, CBD tends to dominate. Stops the user from getting high.
- The plant produces 140+ other compounds that have no psychoactive effect.
- Cannabinoids working together are more effective than one cannabinoid working by itself. Entourage effect.
- Labels indicate the percentage of THC or CBD in the enclosed product
- Pharmaceutical companies have created a synthetic THC drug called Marinol which is very expensive and often is not as effective as cannabis containing more than one cannabinoid.
- Sativa
- From America; taller plants with thinner leaves
- Not much THC, more CBD,
- Mind enhancing; best in morning; relieves pain
- Indica
- Shorter plant with thicker leaves; mostly in Asia
- Mind relaxing;, more THC;, best at night; relieves anxiety
- Don't see many pure sativa or pure indica. Geneticists have hyperdized the plants for specific conditions. Hard to find a true sativa or indica now.
- Medical marijuana became legal in 2016; Recreational marijuana not legal.
- Approximately 500,000 people have medical marijuana cards (MMC) now
- Only about 100 doctors who are truly medical marijuana doctors. There is a process to become licensed which includes education and examination. These doctors do not practice any other form of medicine.
- Conditions to get a MMC:
- Cancer
- Epilepsy
- Glaucoma
- HIV
- AIDS
- PTSD
- ALS
- Crohn's disease
- Parkinson's
- MS
- Terminal Illness
- Chronic nonmalignant pain
- Process to obtain a MMC
- Need to have a consultation with a marijuana licensed physician
- Need a medical record showing a qualified condition. Dr. Goethe also wants a list of current medications.
- Florida driver's license or some other proof of residency
- $75 application fee; card must be renewed annually for same fee
- Physicians clinic fee
- Fees vary. Dr. Bob charges $200
- Law requires a follow-up every seven months; Dr. Bob charges $100 for a follow up.
- Fees are not covered by insurance or Medicare; everything is self-pay
- Typical costs for product use is $100 per month.
- Card allows the holder to buy anything he or she wants, as much as he or she wants and any type he or she wants.
- MMC holder can go to any dispensary; There four in The Villages
- As a doctor, Dr. Goethe is not allowed to handle or sell the product.
- Dispensaries
- Heavily regulated;
- Must grow own stuff without insecticides
- Frequent inspections
- Microdose
- Want to use marijuana to the point just below where one experiences that psychoactive effect
- One will have to experiment and maybe get high once or twice
- Lo and slow
- Dr. Goethe stated that he found literature primarily from Europe that suggests the combination of THC and CBD inhibit the growth of prostate cancer.
- He cited a publication presented by the Sperling Prostate Center in South Florida titled Cannabis and Prostate Cancer. That publication indicated three ways the cannabis inhibits the growth of prostate cancer
- Promotes apoptosis, programed cell death
- Decreases androgen receptor activity
- Discourages the formation of blood vessels
- Link to that publication:
- There is a need to take the lid off and allow cannabis as it relates to cancer.
- In states where recreational marijuana is legal, there is an incentive to still get a medical card because the better quality product goes into medical products and cardholders avoid a 30% sales tax.
- Dr. Goethe performed a study and he concluded that if Florida passed recreational marijuana, the state would gain approximately $1 billion in tax revenue.
- Legal to have a MMC and own a gun and have a concealed weapons permit.
- Dosage Counselors
- Dr. Bob's staff advise new patients what to look for when visiting dispensaries and what kind of products are applicable to their conditions. Objectively, patients will not be susceptible to pressure from dispensaries to purchase unneeded products. .
- Products
- Bev Goethe displayed some of the products available including:
- Disposable Vape Pen
- Syringe containing cannabis oil; can make edibles with the oil
- Tincture in dropper; (place drops under the tongue)
- Topical pain relief pain
- Suppositories
- Bev Goethe displayed some of the products available including:
Monthly Meeting August 5, 2020
Beau Stubblefield-Tave
We had a virtual meeting on Wednesday, August 5, and our speaker was Beau Stubblefield-Tave. Beau is the Executive Director of US Too International. He has a degree in Behavioral Sciences and an MBA in Hospital Administration, both from the University of Chicago.
Beau Stubblefield-Tave
We had a virtual meeting on Wednesday, August 5, and our speaker was Beau Stubblefield-Tave. Beau is the Executive Director of US Too International. He has a degree in Behavioral Sciences and an MBA in Hospital Administration, both from the University of Chicago.
- Beau's Journey. Four Encounters with cancer.
- He lost his sister to breast cancer when she was 34 years.l
- His next encounter was in middle age when, although not yet cancer, a colonoscopy revealed several polyps that would develop into cancer if not removed. Consequently he needs follow-up colonoscopies every 5 years.
- Eleven years ago Beau began losing weight and thought it was due to diabetes medication. However, his primary care physician noted an elevated PSA and a biopsy revealed PCa.
- His urologist at the time told him to answer two questions:
- Is surgery your best choice?
- Am I the best surgeon?
- Beau opted for surgery, but not from his urologist because at the time his doctor did not perform robotic prostatectomies. If diagnosed today, he would probably opt for active surveillance, but is comfortable with his decision
- His urologist at the time told him to answer two questions:
- His fourth encounter is in his current position at US Too which he considers his dream job.
- Active Surveillance is not the same as Watchful Waiting. AS monitors the status of PCa with regular PSA tests and DRE's and biopsies if indicated. It requires a willingness to take a risk and live with it. Men on Watchful Waiting normally don't want to know what is going on with their prostate usually because of other health concerns.
- Beau stressed the importance of DRE exams as diagnostic tools. They can alert the patient and the doctor to a potential problem even with a low PSA.
- He presented a slide that compared the current PCa environment to eleven years ago when he was diagnosed;
- Then
- PSA/DRE for starters
- Random biopsies
- Surgery was the "gold standard".Radiation and chemo were options
- "Doctors know best" was the dominant view
- Caregivers were generally excluded
- Limited hope/life spans for patients with metastatic cancer
- Now
- PSA/DRE for starters
- MRI targeted biopsies
- Active surveillance is the standard of care for most patients
- Informed decision making is on the rise
- Caregivers are welcomed as patient partners
- New treatments significantly increasing hope and life spans for metastatic patients
- Then
- Resignation to Determination
- Beau presented a slide that pictured a man on hands and knees next to a wall with a large shadow on the wall depicting a boxer with his hands raised in victory. This represented a pictorial of this mantra for newly diagnosed patients
- Prostate Cancer Community and Prostate Cancer Care Community
- Community: Patients, Caregivers, Family Friends
- Care Community: Clinicians, Researchers, Advocacy Organizations, Academic Health Centers, Community Hospitals, Pharmaceutical Companies
- Groups at Increased Risk of Prostate Cancer
- Veterans Exposed to Agent Orange
- Individuals with family history
- African Americans and others with African descent
- 60% greater incidence and twice as likely to die
- Information on Active Surveillance
- A member of the audience commented on the lack of information on active surveillance compared to information on the various treatments
- Beau responded that he would investigate expanding information on the US Too website regarding active surveillance
- He referred to a four part video series on active surveillance presented by AnCan in conjunction with US TOO. The first aired on July 30 and the next three are scheduled over the next couple of months. The July 30 speaker was Dr. Peter Carroll of UCSF. You can access this video at the following link:
- https://ancan.org/event/active-surveillance-prostate-cancer-webinar-series-1-dr-peter-carroll-as-beyond/
- S E A Blue
- S Support; E Education; A Advocacy/Awareness
- SEA Blue is US Too's annual fundraising event held during Prostate Cancer Awareness Month. It is usually a walk/run event held in the Chicago area. Because of coronavirus, this year the event will be a two hour webinar on Sunday September 13th from 10:00 to 12:00 CST.
- US Too will now reach out to a national audience. Presentation will be short and Beau indicated that all affiliated support groups prepare a 30 second video for airing during the event.
Monthly Meeting July 1, 2020
Sara Sattler
Summary By Fred Barone
We had a virtual meeting on Wednesday, July 1, and our speaker was Sara Sattler. Sara's education background is nursing and fitness. At one time in her career she was a surgery technician. There was a high incidence of prostate cancer among the men in her family and they all turned to her for advice and counsel, particularly sexual health, primarily because they were not getting the answers that they needed from their medical providers. Sara has spoken to patients, partners, doctors, groups, and vendors, coast to coast.
Physicians are busy and often time with each patient is limited, often 15 to 20 minutes. It is important to know options available to maximize this time.
Sara Sattler
Summary By Fred Barone
We had a virtual meeting on Wednesday, July 1, and our speaker was Sara Sattler. Sara's education background is nursing and fitness. At one time in her career she was a surgery technician. There was a high incidence of prostate cancer among the men in her family and they all turned to her for advice and counsel, particularly sexual health, primarily because they were not getting the answers that they needed from their medical providers. Sara has spoken to patients, partners, doctors, groups, and vendors, coast to coast.
Physicians are busy and often time with each patient is limited, often 15 to 20 minutes. It is important to know options available to maximize this time.
- Why Erections Are Important
- Maintaining size for basic function is important. After surgery, there is nerve damage and shrinkage. If not getting erections, the penis can retract back into the pelvic area and over time the condition becomes more pronounced and voiding can become an issue.
- Healing and blood flow immediately after surgery are important.
- Mental health is important. "Feeling like a man" should not be downplayed.
- Some Facts
- Males experience three to seven nocturnal erections per night lasting 25 to 35 minutes.
- Males in most mammal species possess a penis bone. If injured and lack of blood flow exists, erections occur. Men do not have this.
- Vaginal sex typically lasts three to seven minutes.
- Although sexual activity reduces with age, sexual satisfaction remains high. Intimacy can be external in addition to vaginal.
- Erections Are Complex
- Hormones need to be released, arteries must carry much more blood to the penis and the mind must be working in perfect harmony with the body.
- If stressed and distracted, erections won't happen
- Causes of Erectile Dysfunction
- Physical causes include medicines, surgeries, smoking, diabetes, heart disease and alcohol
- Six Most Common Treatment for ED
- This info can be used for an educated discussion with doctors. The presentation is not a recommendation for any one treatment.
- Oral Medicines
- PDE5 medicines relax the muscle and increase blood flow to the organ. They only work if one is sexually stimulated. Can't just sit and wait for magic to happen. Foreplay and touching..
- PDE5's work in 2/3 of men who have not had surgery and remain effective for approximately 5 years.
- For PCa patients, these meds work less than half the time. After radical surgery, normally put on these meds immediately not to get erections but to increase blood flow.
- Muse
- This is a suppository that is inserted into the opening of the penis.
- Not widely used. Can cause pain, urethral burning, testicular pain, urethral bleeding, low blood pressure.
- Erections are caused locally without injections, arise in five to 10 minutes and normally last 30 to 60 minutes.
- Injections
- Effective in 75% to 85% of men with ED. Side effects can include scarring, infection and priapism (prolonged erection).
- The fluid is a compound that includes an irritant that causes an erection, a pain relieving compound and a sensitivity compound. The different compounds can be increased or decreased depending upon the patient's preference. Their are 13 different compounds. The fluid must be refrigerated.
- Some men can't self inject and need their partners to do it for them. There are also devices which are "auto injectors" and Sara demonstrated how they are used.
- Men normally experience a high degree of satisfaction, but the treatment remains effective for only approximately one year. If an injection does not work, it is important not to double inject. Could lead to the necessity for penis to be drained.
- VenoSeal
- This is for men who can get erections but can't maintain them.
- Sara demonstrated how one works. It is basically a loop that is tightened around the penis to prevent blood from leaking out.
- Penile Implants
- Great for men with no underlying health conditions. Great satisfaction.
- Benefits: works well in creating an erection on demand; sensations are similar to what one would expect to have; it is discreet and easy to use, not visible outside of the body; covered by most insurances including medicare.
- Risks: it is surgery with the associated risks of infection and damage to surrounding tissue; device failure; length and overall size (may need a vacuum pump prior to surgery to elongate the penis and provide overall size, see below); life of 15 years.
- Recommended to wait approximately 2 years post op before surgery. Try other devices to determine if they work before relying on an implant.
- Important to have an experienced doctor perform the surgery, one who does 50 or more per year.
- With an implant, fluid is stored in a reservoir in the lower abdomen. Pushing a button in the testicular sac causes the fluid to flow into two tubes on each side of the penis to cause an erection. When finished, pressing the button again causes the fluid to drain back into the reservoir. Boston Scientific and Mayo clinic are working on an app that can be installed on one's phone to engage and disengage the erectile procedure.
- Sara recommends using a vacuum device 6 to 8 weeks prior to surgery to stretch out the penis to allow the surgeon to insert the biggest implant possible.
- It is important to be mindful of the female partner. Since the male has more staying power, sex could be uncomfortable for the female. Proper lubrication for the female is important. Sara talked about products for women to provide the necessary lubrication.
- Vacuum Erection Devices (VED)
- PED5 and VEDs six to eight weeks post op are the safest way to bring blood back into the penis. VEDs do not require medications, injections or surgery.
- If a patient has underlying health issues (blood thinner, heart medication) VED is safe to use.
- Buy a VED that is FDA approved because it will have a relief valve that will prevent over suction. Do not buy one at an adult store.
- VEDs are safe for men with Artificial Urinary Sphincters.
- Sara demonstrated how VEDs work. The user places a ring on his penis and then inserts the ring into the pump. She demonstrated the proper method of engaging the pump and releasing it
- The ring maintains the blood in the penis until the act is completed and then released. It is important to get a ring that is anatomically designed.
- Sara then demonstrated a traction device that can be used to correct Peyronie's disease. This device requires a prescription from a doctor. The device was developed by a urologist at the Mayo clinic and is sold under the brand name Resotrex.
- Incontinence
- Kegel exercises. Sara stressed the importance of these exercises. She described two different types, the cigar lift and the turtle head retraction. Men may need the help of a pelvic floor therapist to teach proper exercises to target certain areas.
- Noninvasive products include, clamps, pads, Protect Dry Underwear and bags.
- Artificial Urinary Sphincter is a surgically implanted device.similar to a penile implant. A cuff around the urethra filled with saline prevents voiding. An actuator in the testes pumps the saline up into a reservoir allowing the man to void. The saline then returns to the cuff. Surgery is required with all the risks that accompany surgery.
- Bladder Slings can be used to elevate sagging organs pressuring the bladder to maintain continence.
- Shockwave Therapy
- Shockwave therapy is used to improve blood flow to the penis which is not the primary reason for ED after RP. Does not help with nerve recovery.
- Effective for short term treatment but efficacy declines after two years.
- Not covered by insurance and cost is three to five thousand for six to twelve treatments.
- 2018 AUA guidelines indicate that shock wave therapy should be considered investigational.
- Sara's website is www.pivotalrehab.com. You can access her contact information and certain podcasts there.
Monthly Meeting, May 6, 2020
Dr. Perinchery Narayan
Summary by Fred Barone
We held a virtual meeting on Wednesday, May 6, and our speaker was urologist Dr. Perinchery Narayan (Dr. N) of North Florida Urology Associates. Dr. Narayan has been in practice over 40 years and past affiliations include Harvard and University of Florida. Unfortunately only 10 people attended the session. Dr. Narayan's talk addressed three topics, Prostate Cancer, Erectile Dysfunction and Enlarged Prostate.
Prostate Cancer
Dr. Perinchery Narayan
Summary by Fred Barone
We held a virtual meeting on Wednesday, May 6, and our speaker was urologist Dr. Perinchery Narayan (Dr. N) of North Florida Urology Associates. Dr. Narayan has been in practice over 40 years and past affiliations include Harvard and University of Florida. Unfortunately only 10 people attended the session. Dr. Narayan's talk addressed three topics, Prostate Cancer, Erectile Dysfunction and Enlarged Prostate.
Prostate Cancer
- Statistics: Approximately one in seven men will get prostate cancer in their lifetime. There are 200,000 new cases every year with surgery and radiation the current treatment options resulting in erectile dysfunction in 66% to 80% of the men and incontinence in 20% of those treated.
- 4K; Before biopsy or any treatment modality, all of Dr. N's patients take a 4K blood test. This test uses the 4 most important PSA tests and calculates the patients potential risk for aggressive cancer. Physicians can confidently choose active monitoring for low risk patients or perform biopsies on high risk patients. The 4K blood test has undergone extensive clinical testing and found to be effective. A score of 7.5% or higher indicates a 16.4% metastasizes at 20 years.
- Modalities: After an MRI and fusion biopsy if deemed necessary, his practice offers several treatment modalities, HIFU, Freezing, Radiation, and Active Monitoring with referral to University Centers for advanced surgical procedures.
- Multiparimetric MRI: Dr. N presented three slides showing cancer images from MRI's. Cancer at the top of the prostate will not be found by ultrasound and biopsy but detected by MRI.
- Focal Therapies (Treatment of the tumor area as opposed to whole gland)
- High Intensity Focal Ultrasound (HIFU): This ablative therapy is for limited prostate cancer. This is a non invasive, bloodless treatment lasting one to three hours. It is designed as an outpatient one time treatment, can be repeated if necessary, and can be used to treat radiation failures. Robotic movement of the probe allows milimeter precision of tissue treatment effectively ablating prostate cancer tissue. Side effects: < 20% erectile dysfunction compared to 80% with surgery; 0-3% incontinence compared to 20% with surgery. Medicare does not cover the entire cost of HIFU. Dr. N charges $10,000 per procedure. Each procedure requires $2,500 for non-reusable supplies. Part of the fee is used to recover the cost of the equipment, $750,000. There is hope that beginning in 2021 CMS will expand reimbursement for this procedure.
- Cryoablation: Destroys cancer cells by freezing. Argon gas placed in contact with the needle under pressure causes rapid cooling to -160 degrees centigrade. This causes ice crystals to form and then warming of the gas and melting of ice kills cells. This is a precise treatment and cooling of the tissue provides an anesthetic effect, therefore cryo procedures are less painful than heat based procedures such as HIFU. Cryo can be repeated and can also be used for radiation failures.
- Erectile Dysfunction
- Reasons for Therapy Failures: Most common cause of ED is poor blood vessels. Many medications depend upon an existing blood supply to be effective, but if blood vessels don't exist or are atrophied, then those therapies produce limited effect.
- Platelet Rich Plasma Injections: This is an outpatient procedure whereby from a blood sample, platelets are separated using a centrifuge and then injected into the penis. This procedure is performed every other week for three to six weeks and works by reducing inflammation and improving blood flow. Most patients have no side effects but some may develop bruising or swelling. By using the patient's own blood, there is no chance of infection and may help in the treatment of peyronies disease.
- ErosWave (EW) This is a neovascularization therapy that actually grows new tissue and vessels. EW is a shock wave acoustic treatment is in a doctor's office, takes 15 - 20 minutes and is performed once a week for 6 weeks. A widescreen applicator is moved over the penis, scrotum and perineum after a gel is applied. The patient can walk in and out and experiences no pain. This is currently a self pay procedure and costs approximately $200 per treatment.
- Caverstem: This is a stem cell procedure. While the patient is under local anesthesia, the doctor uses a needle to remove bone marrow from the hip area, a 10 minute procedure. The stem cells recover using FDA approved techniques and then reinserted into the body improving blood vessel growth.. Currently, this procedure is not covered by insurance.
- Enlarged Prostate
- Transurethral Microwave Treatment (TUMT) :This is a procedure whereby a catheter is inserted into the prostate and heated. Doctor's perform this procedure. which last 35 to 40 minutes in their offices and prescribe Valium to calm the patient. A catheter man be required for a short period of time. Rezum is a type of TUMT using steam to kill enlarged cells.
- Uro-Lift: This is a surgical procedure requiring anesthesia and performed in the operating room. It works well for smaller prostates and is suitable for patients who fail office procedures.
- Laser: This procedure can cause ejaculatory dysfunction but is a long lasting treatment with no bleeding.
Monthly Meeting, March 4, 2020
Dr. Cathleen Civiello, PhD.
Summary of Dr. Civiello's talk by Fred Barone
Fifty Six people attended our meeting Wednesday, March 4, to hear Cathleen Civiello, PhD, deliver her talk, "Living: Don't Let Cancer Define You." Dr. Civiello is a clinical and organizational psychologist with over 33 years experience. She is affiliated with Simed Health, an organization with over 120 medical professionals encompassing a broad range of medical specialties.
The five year survival rate for PCa is nearly 100%. Because of this, many men do not take the disease seriously.
Optimization (achieving psychological health) with Compensation (allowing for second and third levels of concern) is the model for her practice. The model requires a three pronged approach:
Religious Beliefs
Dr. Cathleen Civiello, PhD.
Summary of Dr. Civiello's talk by Fred Barone
Fifty Six people attended our meeting Wednesday, March 4, to hear Cathleen Civiello, PhD, deliver her talk, "Living: Don't Let Cancer Define You." Dr. Civiello is a clinical and organizational psychologist with over 33 years experience. She is affiliated with Simed Health, an organization with over 120 medical professionals encompassing a broad range of medical specialties.
The five year survival rate for PCa is nearly 100%. Because of this, many men do not take the disease seriously.
Optimization (achieving psychological health) with Compensation (allowing for second and third levels of concern) is the model for her practice. The model requires a three pronged approach:
- Someone/something to love. This could be a spouse, significant other or a close friend, but not necessarily a person. It could be work, a hobby, an animal, or an activity such as a sport.
- Something to do. Get out of the house; Thirty minutes of sun shine daily improves survival rates. Exercise is beneficial to mental health. The Villages offers ample opportunities for something to do, social clubs, exercise clubs, educational clubs, language clubs, Church activities.
- Something to look forward to. This does not have to be big, like a planned vacation, but can be small and numerous. Something on you calendar and be as many as three to seven times per week.
- Relationships with doctors are important. Patients need to be comfortable, trust their doctors and be able to talk calmly.
- When to see a physician: regularly and when worrisome symptoms occur. If you don't go,you don't know.
- Discuss the value of screening with the primary care physician.
- Don't let the internet freak you out.
- Autonomic nervous system - fight or flight reaction. As hunters, man was designed to fight the"bear". If the bear is too big, man tends to run away. At the word cancer, patients can either fight it or run from it in which case the brain automatically turns off, breathing becomes shallow and the patient doesn't hear anything.
- A second set of ears is important, so patients should 1) take someone with them when they visit the doctor; 2) make a list of questions and have three copies, one for the patient; one for the companion, one for the doctor; 3) record the session if the doctor permits.
- Don't forget the importance of staff. Doctors are not trained to be managers. Treat the staff with respect and become friends. This can be helpful in obtaining access to busy physicians.
- Energy Management. Fatigue, sleep, balance
- Energy level is not always ideal. Pay attention to the body and do what you can do.
- Distraction. At time necessary to disengage from the problem at hand.
- Meditation and mindfulness Pay attention to the moment and surroundings.
- Breathing 4-7-8. 4 count inhale; 7 count hold; 8 count exhale. Helps relaxation and sleep. Not easy to do at first.
- Exercise benefits physical and mental health, known to have neuroprotective and cognitive benefits
- Intentional writing - hand write something and then tear it up When having difficulty falling back to sleep after waking during the night. get up, write something down (don't type it),subject doesn't matter, tear up the paper and throw it away. Journaling can also help.
- Know what type of cancer one has and what are the therapy programs
- Men often have difficulty talking about sex with their doctor and with their spouses or significant others. If you don't talk, you don't know.
- Cancer is not about dying. It is part of one's life but not one's life.
- Follow Up after treatment is critical. Additional treatments may be necessary
- Talk to physician about care as a survivor
- Depression is different for someone over fifty and someone in their twenties.
- There are two types of depression
- Situational which is often triggered by a traumatic event or change in one's life, i.e. cancer diagnosis
- Biological which develops from imbalances in the neurotransmitters of the brain;
- Talking can often resolve situational depression.
- Normal to have fleeting thought of suicide in cases of chronic illness
- Suicide is a selfish decision
- If concerned, it is OK to ask a person about thoughts on suicide, but if the person makes a statement wanting suicide, call 911
- Oftentimes women are not as considerate as they should be to men experiencing the side effects of ADT because of what women experience with menopause
- Important for men experiencing side effects to talk to someone else
Religious Beliefs
- It is important for the therapist to know one's religious beliefs whether they be Christian, Muslim, Atheist, Hindu, Buddha, or some other.
Monthly Meeting, February 5, 2020
Dr. Jeffrey Baltzer, MD, Pathologist
Summary of Dr. Baltzer's talk by Fred Barone
On February 5, 2020, 72 people attended our meeting to hear Dr. Jeffrey Baltzer, anatomical and clinical pathologist, speak. Dr. Baltzer has over 40 years practice experience. Dr. Baltzer started his presentation by introducing two very general categories of prostate cancer (PCa) adenocarcinomas, glandular the most prevalent and ductile, rare small cell cancer. He then introduced staging which helps to determine the type of treatment. The clinical stage consists primarily of digital rectal exams, where the physician feels for nodules and hardness, and the pathological stage. The pathological stage encompasses three aspects of the tumor: T how large; M metastasized; N in the surrounding lymph nodes: This is then followed by a numerical scale: ranging from 0 to 4, where 0 usually indicates no treatment, with varying degrees of advancement up to 4 which indicates cancer has spread beyond the gland. He then presented a slide showing a graphics of the prostate in the different stages.
He talked about the Gleason rating system for biopsy samples.
There is a new rating system recently adopted by the World Health Organization:
Other points that Dr. Baltzer mentioned in his talk:
Dr. Jeffrey Baltzer, MD, Pathologist
Summary of Dr. Baltzer's talk by Fred Barone
On February 5, 2020, 72 people attended our meeting to hear Dr. Jeffrey Baltzer, anatomical and clinical pathologist, speak. Dr. Baltzer has over 40 years practice experience. Dr. Baltzer started his presentation by introducing two very general categories of prostate cancer (PCa) adenocarcinomas, glandular the most prevalent and ductile, rare small cell cancer. He then introduced staging which helps to determine the type of treatment. The clinical stage consists primarily of digital rectal exams, where the physician feels for nodules and hardness, and the pathological stage. The pathological stage encompasses three aspects of the tumor: T how large; M metastasized; N in the surrounding lymph nodes: This is then followed by a numerical scale: ranging from 0 to 4, where 0 usually indicates no treatment, with varying degrees of advancement up to 4 which indicates cancer has spread beyond the gland. He then presented a slide showing a graphics of the prostate in the different stages.
He talked about the Gleason rating system for biopsy samples.
- Gleason 3+3=6; normally low risk and may not indicate treatment
- Gleason 3+4=7 intermediate risk, may or not indicate risk;
- Gleason 4+3-7 more aggressive intermediate risk suggesting treatment
- Gleason 4+4=8 aggressive tumor growth indicating treatment necessary
- Gleasons 9&10 very aggressive indicating treatment necessary
There is a new rating system recently adopted by the World Health Organization:
- Group 1: Gleason = to or < than 6.
- Group 2 Gleason 3+4 =7
- Group 3 Gleason 4+3 = 7
- Group 4 Gleason 8
- Group 5 Gleason 9 & 10
Other points that Dr. Baltzer mentioned in his talk:
- Conventional biopsies targeted 12 cores and physicians were guided by ultrasound image. However, where to cut depends upon the judgement of the physician. In his opinion, experience has led to a high degree of accuracy, approximately: 70%. Within the last 5 years fusion biopsies have evolved where an MRI image is overlaid upon the image of the guided ultrasound, giving the physician a clear target of where the tumor exists.
- To really know the advancement and extent of the cancer, the gland must be removed.
- Rating biopsy results is not an exact science. He may look at the same slide on two different days and give two different Gleason scores. In his practice, every biopsy must be examined by two different pathologists and a consensus reached. Dr. Baltzer has forwarded biopsy slides to Dr. Jonathan Epstein at Johns Hopkins for confirmation of findings. Dr. Epstein is a renowned prostate pathologist and limits his practice to reading prostate biopsies.
- Dr. Baltzer recommends getting second opinions regarding biopsy ratings. He mentioned several institutions where these can be obtained, Johns Hopkins being one. If insurance does not cover a second opinion, Dr. Epstein charges $1,500 for an examination.
- Concerning the possibility of an incorrect match of the biopsy slides to the proper patient, Dr. Baltzer indicates that his practice diligently checks the labeling of the biopsies all through their procedures. If the slides coming from the urologist are mislabeled, they have no control. He did state that there have been instances whereby the slides have been flagrantly obviously mismatched (i.e. orders calling for a biopsy reading for one gland when the slides indicate a different gland) that his practice obtained DNA matches to determine that the slides belong to the proper patient. This is not standard practice however.
Monthly Meeting, December 4, 2019
Jan Manarite and Joel Nowak
On December 4, 56 people attended our meeting to hear Jan Manarite and Joel Novak speak via webinar. Both are patient advocates and very knowledge concerning prostate cancer (PCa). Jan has spoken to our group for approximately the last 5 years and has recently joined Cancer ABCs as executive vice president. Cancer ABCs is a non for profit support group whose primary mission is to help people diagnosed with cancer (not just PCa) thrive as individuals. Joel, who has been diagnosed with 5 independent types of cancer, founded Cancer ABCs and serves as its CEO. The format of the presentation was a question and answer session.
Jan Manarite and Joel Nowak
On December 4, 56 people attended our meeting to hear Jan Manarite and Joel Novak speak via webinar. Both are patient advocates and very knowledge concerning prostate cancer (PCa). Jan has spoken to our group for approximately the last 5 years and has recently joined Cancer ABCs as executive vice president. Cancer ABCs is a non for profit support group whose primary mission is to help people diagnosed with cancer (not just PCa) thrive as individuals. Joel, who has been diagnosed with 5 independent types of cancer, founded Cancer ABCs and serves as its CEO. The format of the presentation was a question and answer session.
- Q: What is the cost of the 4K Blood Test? A: This is a pre-biopsy blood test to assist the individual determine if a biopsy is needed. No specific answer for the relative cost since it varies. Refer to the OPKO website, which was presented on the screen, for more information. OPKO is the company who distributes the 4K Score Blood Test.
- Q: Do you have an opinion on the benefits of Proton vs. Photon Radiation Therapy (RT).? A: The prostate size has a great deal to do with the type of RT and subsequent side effects. Hormone therapy may be required to reduce the size of the prostate to acceptable level to allow RT.
- Proton Therapy is expensive. The radiation beam enters the body from the right and left sides compared to photon beams which enter from multiple points, 360 degrees around the body. If a person has a double hip replacement, proton RT cannot be performed (per Jan's recall from talking with UF Jacksonville, FL Proton_ - and 1 hip replacement may be a problem - ask your radiation oncologist.
- The smaller the target, the more higher the requirement for whole gland treatment.
- RT procedures seem to be gravitating toward stereotactic body radiation therapy (SBRT). which involves higher doses with less frequency. Cyberknife is 1 brand of SBRT. Jan mentioned that Dr Debra Freeman at Cyberknife of Tampa Bay was an well-known expert in prostate cancer.
- Q: How do I determine what treatment is best for me. A: Before any treatment decision, it is important to know what kind of PCa the individual has. There are 5 Risk Categories for Newly Diagnosed according to 2017 AUA Guidelines.
- Very Low Risk
- Low Risk
- Favorable Intermediate Risk.
- Unfavorable Intermediate Risk
- High Risk.
- Treatments can range from active surveillance, low risk, to surgery, radiation and hormone therapy depending upon the risk.
- Gleason scores are subjective and it behooves one to get a second opinion on your pathology. Johns Hopkins is active in rendering second opinions. The following link to the Cancer ABCs website provides information on obtaining second opinions: webpage on Cancer ABCs that talks about getting a 2nd opinion on pathology.
- Links to Johns Hopkins and their head of pathology, Dr. Jonathan Epstein, follow:
- Treatment decisions will depend upon the type of PCa, overall health, and the patients' own priorities and desires. This is "Shared Decision-making".
- Q: After a radical prostatectomy and androgen deprivation therapy (ADT) a gentlemen complained about extreme fatigue. A: ADT can lower hemoglobin or hematocrit (blood markers on your CBC report). It is important to obtain reports of medical markers which may indicate anemia:
- Hemoglobin (HGB): the molecule in red blood cells
- Hematocrit (HCT): the ratio of volume of red blood cells to the volume of blood. (HCT is usually HGB x 3.)
- Borderline anemia is common with ADT. Treatment for anemia may not be necessary - discuss with your doctors and nurses. Medical oncologists are especially knowledgeable in this area.
- Be encouraged to talk to the nurses assisting you doctor. Oftentimes they are more in tuned to side effects that the doctor. Once the doctor leaves the room, he is on to the next case.
- Q: There is a test being developed in the UK called PUR (Prostate Urine Test). What is the status? A. The test is not standard protocol and is only in the development stage. Oftentimes when news develops, reporters do not clarify both the positives and negatives and overstate the benefits.
- Q: What do you do if your doctor refuses to provide a test you requested? The gentleman in question requested a free PSA test and was refused.
- A: Don't be afraid to change doctors if answers are not satisfactory. On a show of hands, approximately half of the men attending had switched doctors. Doctors are educated contractors working for you, and you are paying them (through your insurance). They should be 100% attentive to you. Once they leave the room, they are on to their next patient. Ask the positives and negative and side effects of any treatment suggestion. Question your doctor about alternatives and don't be afraid to ask "Why not?" You are responsible for your health.
- Q: How frequently is SpaceOar used? SpaceOar is a hydrogel that is inserted between the prostate and the rectum prior to RT. It provides a buffer between the two glands and reduces the risk of burning the rectum. A: Some radiologists use it regularly and some not at all. How often depends upon insurance and the doctor. It is not yet the standard of care.
- Q: If SpaceOar is inserted between the rectum and the prostate, why not also between the bladder and the prostate? A: Great question. The speakers will be participating in a Cancer ABCs podcast in the near future with one of the doctors involved in SpaceOar trials. They will pose that question and pass the results along to us.
- Q: How long does rectal bleeding last after radiation? A: There is no way to predict to this. This is such an important question, and it's hard to find good info. Since Dr Snuffy Myers (world renown medical oncologist) HAD radiation side effects, including rectal bleeding (even taking time off from his clinic), he is a favorite source of information. Here is a short video from Dr. Myers from 2011: Managing Radiation Side Effects
- Q: Can you comment on the National Comprehensive Care Network (NCCN) and what is purpose is? A: NCCN is one of the organizations that puts out "guidelines" for prostate cancer testing and treatment. NCCN is composed of 28+ institutions in the US. NCCN updates their guidelines every year. Doctors want guidelines. Guidelines give them some comfort that they are not engaging in malpractice. This organizations relies on historical results and clinical trials in developing guidelines. Here is the link to the booklet shown to everyone Wednesday night.
- Another organization that puts out guidelines is AUA, which is your urologist's own organization. They have solid 2017 Guidelines here for newly diagnosed, which have been jointly endorsed by ASTRO (radiation oncologists), and ASCO (medical oncologists) - not sure about recurrent and advanced. These are the guidelines Jan had up on the screen Wednesday night for the newly diagnosed patient - he was "favorable intermediate risk" if I remember right. (Sally Bard went with Jan last year to the annual AUA meeting in Chicago).
- Final Comment: Deciding what form of RT can be a daunting task. One potential strategy is to engage in hormone therapy (also called androgen deprivation therapy or ADT) to inhibit the spread of PCa and provide time to make the final decision. Joel has been on Intermittent ADT for several years, and is a great resource on the subject. You can connect with Joel (or Jan) on Cancer ABCs Cancer Thriver Online Community HERE.
Monthly Meeting November 6, 2019
Dr. Randal Henderson
Our speaker at our meeting on Wednesday, Nov. 6, was Dr. Randal Henderson, board certified radiation oncologist with the University of Florida Health Proton Therapy Institute in Jacksonville, Florida. Sixty-two people attended his talk which focused upon the benefits of proton radiation therapy as opposed to photon radiation therapy which are basically x-rays..
Monthly Meeting
October 2, 2019
Dr. Gabe Mirkin
Dr. Gabe Mirkin, sports medicine doctor, fitness guru and former radio talk show host addressed the audience on October 2 to talk about healthful lifestyles for prostate cancer patients. Dr. Mirkin is a rare individual who has been board certified in four medical specialties, sports medicine, allergy, immunology and pediatrics. Dr. Mirkin provided handouts of his presentation and authorized the release of a copy of his presentation to be posted on this web site. Click here to view his presentation.
Monthly Meeting
August 7, 2019
Dr. Catherine Keller
Lake Medical Imaging
Dr. Catherine Keller, diagnostic radiologist affiliated with Lake Medical Imaging, addressed the audience of fifty-four people at our meeting on August 7. She focused upon PET scans using different imaging agents, one being Axumin and the second using Gallium (not to be confused with Gadolinium used in MRI scans).
Monthly Meeting
June 5, 2019
Mr. Peter McQuaid, Account Executive
Myriad Genetics
Peter talked about the Prolaris test invented by Myriad Genetics. The test is performed on biopsied tissue and measures the aggressive of PCa by examining cycle cell proliferation and predicting how fast cancer cells multiply and divide. The results are combined with clinical variables in a weighted algorithm and calculates the risk of death in percentage terms in a 10 yr. time frame when treated conservatively (active surveillance) and risk of metastases in percentage terms when definitively (radiation, prostatectomy, hormone therapy) treated. He presented slides of what the report looks like. Rather than trying to document what he presented regarding the report, I am posting a link to a video prepared by Myriad Genetics that explains the report:
https://prolaris.com/understanding-the-prolaris-report/
Other points presented in the discussion:
Monthly Meeting
May 1, 2019
Drs. Tony Mkpolulu and Catherine Keller
Ninety Eight people attended our meeting on May 1 to hear Drs. Tony Mkpolulu and Catherine Keller of Lake Medical Imaging talk. Dr. Tony talked about Multi Parametric Magnetic Resonance Imaging (mpMRI) and cancer detection and Dr. Catherine talked about gadolinium as a contrast agent.
Dr. Tony:
Monthly Meeting
April 3, 2019
Dr. Patrick Acevedo, MD
On Wednesday, April 3, Dr. Patrick Acevedo, board certified medical oncologist affiliated with Florida Cancer Specialists, addressed an audience of 139. His talked focused upon recent developments and touched upon several topics. Highlights follow.
AR-V7 Mutation
Widely used hormone treatment with Xtandi and Zytiga will not work if the cancer is caused by this gene mutation. Studies have shown that they have no effect. Medicare now covers AR-V7 detect test. Dr. Acevedo recommended that anyone diagnosed with metastic prostate cancer take the test immediately. If positive, the patient should treat with chemotherapy only. If negative, the patient can treat with both hormone therapy and chemotherapy. The detect test is available from many laboratories and turn around time approximates 7 days. The test allows the patient to make an informed decision about his treatment and eliminate taking useless expensive drugs.
Testasterone Replacement
Low testoaterone can produce unhealthy conditions; :reduced bone mass, sleep apnea reduced muscle mass, reduced enerdy levels, obesity, depression and a low sex drive. Before engaging in cancer therapies that will reduced testosterone, patients should have testostereon levels measured and possibly engage in hormone replacement therapies to bring testosterone to normal levels.
Liquid Biopsy
This is a term used for genetic testing which is considered non invasive. Such tests can look at 160 mutations with one blood draw with over 90% effectiveness in determing the mutation causing uncontrolled cell growth.
Zuclomiphene
This is a drug in clinical trials produced by Veru Inc., a biopharmaceutical compnay. The drug shows promise in combatting hot flashes.
Immunotherapy
Cancer cells can disguise themselves so that the immune system cannot recognize them and attack them. Checkpoint inhibitors by themselves don't do anything to prevent this. Yervoy and Opdivo, taken together can prevent this and allow iimmune cells to attack cancers.
Compassionate Use Programs
Serioulay ill patients may be able to obtain treatment for drugs not FDA approved but in clinical trials, even though the patient is not participating in clinical trails. These programs are normally available from the company making the drug, are highly regulated and oftentimes free.
Clinical Trials
Dr. Acevedo recommended that patients with advanced prostate cancer participate in clinical trials if possible. He suggested going to the website clinicaltrial.gov. The site contains a box where one can enter the disease and the site will take one to a complete listing of all clinical trials in progress for that disease, with options for several filters, i.e. location, still recruiting, age, etc. The list also provides the institution that is conducting the trial. He suggested contacting the appropriate institution and requesting to speak with the Clinical Research Coordinator.
Before embarking upon treatment, know your genetic make up and your testosterone leve.
Monthly Meeting
March 6, 2019
Debra Luce ARNP-BC
Our speaker at our meeting on March 6 was Debra Luce, ARNP-BC. Debra is affiliated with Florida Cancer Specialists and 50 people attended to hear her talk on "Caring for the Caregiver."
She brings her experience in dealing with caregivers as a nurse practitioner and her personal experience as a caregiver for her parents, her siblings and her husband. who was diagnosed with PCa approximately 5 years ago. The key points of her talk follow.
Monthly Meeting
February 6, 0019
Dr. Harvey Taub
Fifty Six people attended our meeting on Wednesday, February 6 to hear board certified urologist Dr. Harvey Taub. Dr. Taub is affiliated with Advanced Urology Institute and his talk focused on radical prostatectomies using robotic technology. His talk started with a brief history of the utilization of robotics in general surgical procedures, not just prostate procedures. One of the drawbacks of robotic surgery is that the inserted instrument moves in an opposite of the surgeon's hands. In 2000 the first prostatectomy using the da Vinci surgical system was performed. With this technology, the inserted instrument moves in the same direction as the surgeon/s hands. Taub spoke of three types of prostatectomies, perineal, not widely performed but has instances where beneficial, open and robotic. Advantages of robotic over open prostatectomies include:
Monthly Meeting Summary
January 2, 2019
Dr. Richard Roach
Eighty-nine people attended our meeting Wednesday evening, January 2, to hear Dr. Richard Roach, board certified urologist, speak. Dr. Roach is affiliated with Advanced Urology Institute, one of the biggest urology groups in Florida. His talk focused upon treatment for Benign Prostate Hyperplasia, enlarged prostate. This condition can be treated with prescription drugs or with surgery. Drugs are of two types, alpha blockers which relax the muscles around the prostate or alpha reductase inhibitors which stop the body from creating hormones that cause enlarged prostate and may also shrink the prostate. Dr. Roach suggested utilization of drug treatment before surgery. Regarding surgery, there are several different procedures, but Dr. Roach focused upon the two recent developments, the Uro Lift treatment and the Rezum treatment. The Uro Lift treatment inserts implants, similar to staples, between the urethra and the prostate. The implants hold the prostate away from the urethra allowing the urethra to expand to a wider diameter. The Rezum treatment, using a minimal amount or water, inserts steam into the prostate and kills cells allowing the gland to shrink and increase the diameter of the urethra. . Dr. Roach presented a graphic of how this procedures. He prefers the Rezum method and performs this procedure. The procedure is performed on an out patient basis in the doctor's clinic and is minimally invasive. The procedure has has no adverse effect upon prostate cancer or erectile dysfunction, however, a catheter is required for a few days to ease urination during healing. Dr. Roach mentioned that one of the colleagues in his physician group will perform the Uro Lift procedure should a patient request it.
After the presentation, the question and answer period covered a wider range of topics, not just BPH. Some of the key points presented include:
Dr. Randal Henderson
Our speaker at our meeting on Wednesday, Nov. 6, was Dr. Randal Henderson, board certified radiation oncologist with the University of Florida Health Proton Therapy Institute in Jacksonville, Florida. Sixty-two people attended his talk which focused upon the benefits of proton radiation therapy as opposed to photon radiation therapy which are basically x-rays..
- The maximum energy level from photon radiation occurs 2.5 centimeters under the skin whereas max energy with proton therapy occurs at the end of the range.
- X-ray beams will penetrate all the way through the body past the target whereas proton beams will stop at the target.
- He presented slides showing images of the pelvic area from posterior, anterior and side views comparing proton and IMRT beams. These slides showed the penetration of the beams of each therapy. The slides showed less exposure to surrounding tissue from protons compared to photons.
- Proton beams attack the prostate from the side compared to IMRT beams that attack from various directions
- SpaceOar, a protein gel, has replaced balloon insertions between the prostate and the rectum. The gel keeps the rectum 1.5 centimeters away from the prostate gland.
- A slide presented effective control rates comparing proton radiation with IMRT, Brachytherapy, and Hypofractionated SBRT; Sloan Kettering experience rates were used for the other three disciplines.
- For low risk patients, all treatments provided effective results.
- For intermediate, the slide showed that proton provided a 99% effective control rate compared to approximately 85% for IMRT and SBRT and 95% for brachytherapy.
- For high risk, proton resulted in a 76% effective control rate compared to 81% for brachytherapy and SBRT and 68% of IMRT
- Effective control rates reflect the lack of cancer signs 5 years after treatment.
- Double Strand Breaks: Proton radiation causes double strand breaks in the damaged DNA of cancer cells. Photon causes single strand breaks. With double strand breaks, cancer cells have a harder time repairing themselves.
- Side Effects
- Rectal and Bladder Toxicity: 1% of cases with proton therapy
- Residual Risk of rectal urgency and frequency: 15% urgency with IMRT vs 7& with proton; 10% frequency with IMRT vs 4% proton
- Risk of second malignancy: 6% with IMRT and about half of that with proton but not zero
- Urinary Incontinence: 3-5% with IMRT, 2% with proton
- Erectile Function: Much of this function depends on erectile function at the patients baseline before treatment. If no difficulty at baseline, patients undergoing proton radiation have no difficulty after treatment.
- The standard protocol for proton radiation is eight weeks, 5 days per week. His practice currently is performing a clinical trial with a 4 week protocol and higher dosage. One hour is required per treatment. Actual treatment is 15 minutes with the balance being prep and recovery time.
- Proton radiation can be performed as salvage after radical prostatectomy. The radiation must reach everything that the surgeon touched requiring a lower dosage and therefore not as effective. Results show 59% of patients have no problems after 5 years.
- 5% of total radiation patients undergo proton therapy. The cost is higher than IMRT. Medicare has approved proton therapy, but some insurance companies will not pay.
- A patient can receive proton radiation for prostate cancer if the patient has a pacemaker installed.
- Hormone therapy can be used with proton radiation. Hormone therapy is typically not used with low and favorable intermediate risk (3+4 gleason) patients. Hormone therapy is used with unfavorable intermediate and high risk patients.
- Dr. Henderson summarized by stating that proton radiation therapy provides excellent control rates, a low risk of toxicity and a promising option for prostate cancer patients.
Monthly Meeting
October 2, 2019
Dr. Gabe Mirkin
Dr. Gabe Mirkin, sports medicine doctor, fitness guru and former radio talk show host addressed the audience on October 2 to talk about healthful lifestyles for prostate cancer patients. Dr. Mirkin is a rare individual who has been board certified in four medical specialties, sports medicine, allergy, immunology and pediatrics. Dr. Mirkin provided handouts of his presentation and authorized the release of a copy of his presentation to be posted on this web site. Click here to view his presentation.
Monthly Meeting
August 7, 2019
Dr. Catherine Keller
Lake Medical Imaging
Dr. Catherine Keller, diagnostic radiologist affiliated with Lake Medical Imaging, addressed the audience of fifty-four people at our meeting on August 7. She focused upon PET scans using different imaging agents, one being Axumin and the second using Gallium (not to be confused with Gadolinium used in MRI scans).
- PET Scans (Positron Emission Tomography) vs. CAT Scans (Computed Tomography). CAT scans are X-ray based. The equipment takes multiple images from different geometric planes encompassing 360 degrees of the body and via computer technology produces a composite. With a PET scan, a small amount of a radioactive imaging agent is injected into the body that emits a light signal where the abnormality exists. CAT scans are better for bone images and PET scans are better for tissue images
- The imaging agent normally used in PET scans is fluorodeoxyglucose (FDG). In May 2016, the FDA approved Fluciclovine (Axumin) for use as an imaging agent in men with rising PSA's after primary treatment with surgery or radiation. Although Axumin could be used pre-biopsy or pre-treatment, it is not FDA approved at this time. PET scans with Axumin are able to detect micro-metastatic specs the FDG scans normally miss. FDG scans take one hour and Axumin scans approximate 35 minutes. The higher the PSA and the higher the Gleason score, the better results obtained.
- Ga-PSMA PET scans use gallium as the imaging agent. PSMA, not to be confused with PSA, stands for prostate specific membrane antigen. It exists in the prostate membrane but can also be found in the small intestines, colon, kidneys, salivary glands and certain nerve cells. Ga-PSMA scans are not approved in the United States, but are used in other countries. Currently there are three clinical trials in the US. The potential to deliver therapy exists with this type of scan.
- Dr. Keller presented several graphs showing the effectiveness of both Axumin and Ga-Pet scans. In most cases, the Ga-PET scan reflected higher detection rates. In once comparison, the positive predictive value of the Ga-PSMA scan was 90% compared to 73% for the Axumin scan. However, the negative predictive value was only 24% for the Ga-PSMA scan compared to 90% for the Axumin scan.
- Dr. Keller could not predict when the Ga-PSMA scan would be approved by the FDA.
Monthly Meeting
June 5, 2019
Mr. Peter McQuaid, Account Executive
Myriad Genetics
Peter talked about the Prolaris test invented by Myriad Genetics. The test is performed on biopsied tissue and measures the aggressive of PCa by examining cycle cell proliferation and predicting how fast cancer cells multiply and divide. The results are combined with clinical variables in a weighted algorithm and calculates the risk of death in percentage terms in a 10 yr. time frame when treated conservatively (active surveillance) and risk of metastases in percentage terms when definitively (radiation, prostatectomy, hormone therapy) treated. He presented slides of what the report looks like. Rather than trying to document what he presented regarding the report, I am posting a link to a video prepared by Myriad Genetics that explains the report:
https://prolaris.com/understanding-the-prolaris-report/
Other points presented in the discussion:
- The Prolaris test has a predictive value two times better than PSA plus Gleason
- Pathology results are subject to the interpretation and skill of the pathologist. Peter referenced a test performed by Dr. Jonathan Epstein, Professor of Pathology, Oncology and Urology at Johns Hopkins whereby 46 cases were studied. The respondents achieved consensus on 38 cases and non-consensus on eight cases. On a one of his slides, Peter presented the results of three cases:
- Case D: Six pathologist rated it a 3+3, three rated it a 3+4 and one rated it a 4+3.
- Case E: Four pathologists rated it 3+3, 3 rated it 4+3, 2 rated it 4+3 and one rated it 4+4.
- Case G: One pathologist rated it 3+4, 4 rated it 4+3 and 5 rated it 4+4.
- With the Prolaris test the patient is less dependent upon the pathologist's report.
- The Prolaris test is best suited for patients in the low to intermediate Gleason risk categories. The test helps the patient decide conservative vs definitive treatment given the risks (bowel and urinary incontinence and erectile dysfunction, chemical castration effects) of treatment. Patients in the higher risk categories will typically need definitive treatment.
- To be able to issue a report, Myriad needs a biopsied sample at least .5 millimeters in size with 75% concentration of tumor tissue.
- The Prolaris test for patients with very low risk, low risk, and favorable intermediate risk PCa cancer is covered by Medicare for patients with active Medicare Part B. For patients with unfavorable intermediate or high risk PCa, Myriad will test for active Medicare patients at no cost to the patient and place the data into a registry for future contractual discussion with CMS. Regarding conventional insurance, coverage will depend upon the plan specifics. For those patients with no coverage, Myriad will provide an interest free payment plan. Myriad also has a financial assistance program to assist in covering out of pocket cost for Prolaris testing. .
- To obtain a Prolaris test, the patient's urologist typically initiates to Myriad who then contacts the lab where the biopsy tissue is stored, listed on the pathologist's report. The lab normally keeps the tissue for a period of years. Myriad performs the test and sends the results back to the requesting pathologist who can then provide the results to the patient.
Monthly Meeting
May 1, 2019
Drs. Tony Mkpolulu and Catherine Keller
Ninety Eight people attended our meeting on May 1 to hear Drs. Tony Mkpolulu and Catherine Keller of Lake Medical Imaging talk. Dr. Tony talked about Multi Parametric Magnetic Resonance Imaging (mpMRI) and cancer detection and Dr. Catherine talked about gadolinium as a contrast agent.
Dr. Tony:
- Multi (meaning many) parametric MRI's consist of three basic characteristics
- Standard anatomical imaging
- Enhanced contrast imaging which measures the flow of the contrast agent and provides physiological tissue characteristics
- Diffusion weighted imaging which uses the diffusion of water molecules to generate contrast images
- The prostate consists of three basic zones
- Central zone
- Peripheral zone where most of the cancers occur
- Transition zone which is around the urethra and can lead to BPH
- One in six men will encounter prostate cancer in their lifetime and the incidence is expected to double in the future because of the aging population
- mpMRIs provide accurate prediction of cancer stage. and have led to fewer biopsies, less use of needles and guided targeted biopsies. In as standard TRUS biopsy the physician inserts the needle into the area where he thinks the tumor is, basically a blind approach. With an overlay of the mpMRI on top of the TRUS image, the physician guides the needle to the exact spot of the tumor.
- Before performing a mpMRI, the radiologist needs a patient's PSA history and any prior biopsies taken at least six weeks prior to the mpMRI. Patients are instructed to refrain from ejaculation for three days prior to the scan. This builds up Seminal Vesicle volume and enhances the image result.
- The results of a mpMRI are presented using the Prostate Reporting Imaging and Data System (PI-RAD). This is a 5 point scale with 5 being the most probably malignant. Biopsies are recommended for PI-RADs 4 and 5 and not usually recommended for 1 and 2. Three requires a decision by the doctor and the patient. If there are multi-focal tumors, PI-Rads are reported for each tumor.
- Dr. Tony put up several slides that showed cancer tumors in the prostate and in the areas around the prostate. These gave a good idea of what the doctors see.
- mpMRIs are better than axumin PET scans for detecting cancers in the prostate gland and axumin PET scans provide better results for detecting cancers outside of the gland.
- There is no minimum threshold for detecting cancers by mpMRI. They can detect cancers four of five milimeters in size.
- Gadolinium (Gd) is a metallic element and the contrast agent used in mpMRI scans.When initially used, the medical community considered Gd 100% safe. In the 2006 time frame research discovered a link between Gd and nephrogenic scolerosing fibrosis, a disease of the skin and internal organs related to kidney disease. At that time warning labels were required and patients were required to take an eGFR test before undergoing a mpMRI with Gd contrast. This test measures the filtration rate of the kidneys and must produce a result greater than 30 for the patient to qualify for a contrast mpMRI. If lower, the patient must take the scan without the contrast.
- In the 2014 time frame, research discovered that MS sufferers, due to the need for many MRIs, GD deposits were situated in the cerebellum. Gd deposits can also be found in skin, bones and organs. In 2017 and 2018, the FDA and the European community outlawed certain Gd products
- There are two basic types of Gd products, liner and macrocyclic. Liner products can wrap to release Gd into the body. Macrocyclic products are curricular and basically hold Gd in a cage with nitrogen on the bottom and oxygen on top. The cage almost never comes apart..
- At this time the long term effects of Gd are not known. Those most at risk are children, pregnant women and patients with many doses. There seems to be no problem with normal kidney function, even if there are minor deposits. Dr. Keller advised discriminate use of Gd. Use a risk reward guideline depending why the doctor wants the contrast scan.
Monthly Meeting
April 3, 2019
Dr. Patrick Acevedo, MD
On Wednesday, April 3, Dr. Patrick Acevedo, board certified medical oncologist affiliated with Florida Cancer Specialists, addressed an audience of 139. His talked focused upon recent developments and touched upon several topics. Highlights follow.
AR-V7 Mutation
Widely used hormone treatment with Xtandi and Zytiga will not work if the cancer is caused by this gene mutation. Studies have shown that they have no effect. Medicare now covers AR-V7 detect test. Dr. Acevedo recommended that anyone diagnosed with metastic prostate cancer take the test immediately. If positive, the patient should treat with chemotherapy only. If negative, the patient can treat with both hormone therapy and chemotherapy. The detect test is available from many laboratories and turn around time approximates 7 days. The test allows the patient to make an informed decision about his treatment and eliminate taking useless expensive drugs.
Testasterone Replacement
Low testoaterone can produce unhealthy conditions; :reduced bone mass, sleep apnea reduced muscle mass, reduced enerdy levels, obesity, depression and a low sex drive. Before engaging in cancer therapies that will reduced testosterone, patients should have testostereon levels measured and possibly engage in hormone replacement therapies to bring testosterone to normal levels.
Liquid Biopsy
This is a term used for genetic testing which is considered non invasive. Such tests can look at 160 mutations with one blood draw with over 90% effectiveness in determing the mutation causing uncontrolled cell growth.
Zuclomiphene
This is a drug in clinical trials produced by Veru Inc., a biopharmaceutical compnay. The drug shows promise in combatting hot flashes.
Immunotherapy
Cancer cells can disguise themselves so that the immune system cannot recognize them and attack them. Checkpoint inhibitors by themselves don't do anything to prevent this. Yervoy and Opdivo, taken together can prevent this and allow iimmune cells to attack cancers.
Compassionate Use Programs
Serioulay ill patients may be able to obtain treatment for drugs not FDA approved but in clinical trials, even though the patient is not participating in clinical trails. These programs are normally available from the company making the drug, are highly regulated and oftentimes free.
Clinical Trials
Dr. Acevedo recommended that patients with advanced prostate cancer participate in clinical trials if possible. He suggested going to the website clinicaltrial.gov. The site contains a box where one can enter the disease and the site will take one to a complete listing of all clinical trials in progress for that disease, with options for several filters, i.e. location, still recruiting, age, etc. The list also provides the institution that is conducting the trial. He suggested contacting the appropriate institution and requesting to speak with the Clinical Research Coordinator.
Before embarking upon treatment, know your genetic make up and your testosterone leve.
Monthly Meeting
March 6, 2019
Debra Luce ARNP-BC
Our speaker at our meeting on March 6 was Debra Luce, ARNP-BC. Debra is affiliated with Florida Cancer Specialists and 50 people attended to hear her talk on "Caring for the Caregiver."
She brings her experience in dealing with caregivers as a nurse practitioner and her personal experience as a caregiver for her parents, her siblings and her husband. who was diagnosed with PCa approximately 5 years ago. The key points of her talk follow.
- Debra circulated a one page hand out published by ASCO, "Effective Caregiving at Home" that provides concise, but helpful, hints on caregiving.
- Don't put up with complacent doctors and get 2 opinions other than the initial urologist. Any doctor not receptive to second opinions is not worth his salt.
- Once they hear the word cancer, patients often see the 'hourglass with sands trickling away their lives" in their minds and refuse to engage in conversation. It is important for the caregiver, while remaining tender and sensitive, to get the patient to talk, and not just to one person but also family members, neighbors and circles of friends. Laughter is important for endorphins and the immune system.
- Don't baby the patient and try to live as normal as possible.
- Intimacy between the caregiver and patient is important to quality of life.
- .The United Way 211 program can provide essential community services for the caregiver and patient namely transportation, household chores, physical and mental health resources. High turnover among caregiver assistance personnel can be a problem.
- It is mandatory for the caregiver to take care of himself or herself. Predominately women tend to neglect this. Taking care of oneself includes time off for oneself and not giving up outside activities. Failure to do this can lead to guilt and resentment. Batteries need to be recharged or "caregiver burnout" can result. .
- Breathing techniques, yoga, medication and similar activities are different forms of exercise helpful in maintaining control
- No man wants to have menopause, a common similar side effect of hormone therapy. Debra and her husband decided upon Radiation Therapy for his form of treatment. The decision then was to have RT with or without hormone therapy. She referenced the National Cancer Comprehensive Network (NCCN) for current guidelines at the time. For her husband's profile, the success rate for combined treatment was 95% compared to RT alone of 93%. They decided that the benefit differential was not significant enough to warrant combined treatment.
Monthly Meeting
February 6, 0019
Dr. Harvey Taub
Fifty Six people attended our meeting on Wednesday, February 6 to hear board certified urologist Dr. Harvey Taub. Dr. Taub is affiliated with Advanced Urology Institute and his talk focused on radical prostatectomies using robotic technology. His talk started with a brief history of the utilization of robotics in general surgical procedures, not just prostate procedures. One of the drawbacks of robotic surgery is that the inserted instrument moves in an opposite of the surgeon's hands. In 2000 the first prostatectomy using the da Vinci surgical system was performed. With this technology, the inserted instrument moves in the same direction as the surgeon/s hands. Taub spoke of three types of prostatectomies, perineal, not widely performed but has instances where beneficial, open and robotic. Advantages of robotic over open prostatectomies include:
- less blood loss
- nerve sparing
- smaller incisions
- shorter hospital stay
- shorter catheter time
- better ergonomic posture for the surgeon
- better surgeon dexterity.
- Surgery with the da Vinci system normally takes approximately two and a half hours from incision time to closure..
- The patient's head is in a downward position to cause the intestines to roll away from the prostate.
- The patient is strapped in to limit movement, however, if limited motion does occur, usually anesthesia will be increased.
- Regarding urinary incontinence 95% to
- 98% of his patients return to becoming "effectively dry", meaning that accidents may occur but they can function normally without urinary pads. The time frame varies and kegel exercises help.
- Erectile dysfunction is a wild card. Sparing nerves is like peeling wallpaper.
- Currently virtually all urological residency programs require training and competency protocols in the use of da Vinci systems.
- Currently two models of da Vinci equipment exist, the S1 model which basically moves in one direction and the X1 model which can rotate in any direction. Additionally, there is "Sunhance" equipment that is made by a different manufacturer and provides sensitivity similar traditional surgical tools
- Dr. Taub talked about uses of robotics in treating other types of cancers, bladder, kidney, and other uses of robotics, including pyeloplasty, and sacrocolpopexy.
- Robotics can be used to perform simple prostatectomies where only part of the prostate is removed to treat benign BPH.
- Regarding the choice between surgery or radiation, there is no clear answer. The answer is the same for both, whatever is localized and agreeable.
Monthly Meeting Summary
January 2, 2019
Dr. Richard Roach
Eighty-nine people attended our meeting Wednesday evening, January 2, to hear Dr. Richard Roach, board certified urologist, speak. Dr. Roach is affiliated with Advanced Urology Institute, one of the biggest urology groups in Florida. His talk focused upon treatment for Benign Prostate Hyperplasia, enlarged prostate. This condition can be treated with prescription drugs or with surgery. Drugs are of two types, alpha blockers which relax the muscles around the prostate or alpha reductase inhibitors which stop the body from creating hormones that cause enlarged prostate and may also shrink the prostate. Dr. Roach suggested utilization of drug treatment before surgery. Regarding surgery, there are several different procedures, but Dr. Roach focused upon the two recent developments, the Uro Lift treatment and the Rezum treatment. The Uro Lift treatment inserts implants, similar to staples, between the urethra and the prostate. The implants hold the prostate away from the urethra allowing the urethra to expand to a wider diameter. The Rezum treatment, using a minimal amount or water, inserts steam into the prostate and kills cells allowing the gland to shrink and increase the diameter of the urethra. . Dr. Roach presented a graphic of how this procedures. He prefers the Rezum method and performs this procedure. The procedure is performed on an out patient basis in the doctor's clinic and is minimally invasive. The procedure has has no adverse effect upon prostate cancer or erectile dysfunction, however, a catheter is required for a few days to ease urination during healing. Dr. Roach mentioned that one of the colleagues in his physician group will perform the Uro Lift procedure should a patient request it.
After the presentation, the question and answer period covered a wider range of topics, not just BPH. Some of the key points presented include:
- For those individuals who have had treatment and are experience a rising PSA, Dr. Roach suggested an Axumin Pet Scan. This type of scan can detect cancers that are extremely minute.
- Advancements in MRI technology can provide images that eliminate the need for biopsies. When biopsies are necessary, he strongly believes in "fusion biopsies" whereby the MRI image is overlaid upon the ultrasound image allowing the physician to accurately pinpoint where to obtain tissue samples.
- Dr. Roach encouraged attendees to always seek second opinions.. He wants his patients to be well informed and understand all options available
Disclaimer: The Villages Prostate Group does not recommend or endorse the speakers, publications or descriptions of publications. They are simply provided as additional resources for your information.