It is kind of crazy to do surgery planning to do radiation afterwards. It's one thing if it fails and you have to have salvage radiation.It's quite another to plan on the worst set of side effects possible.
You have to talk to a radiation oncologist with experience at this kind of therapy (a brachytherapist who also does external beam).
3) There is no evidence that hormone therapy improves the outcomes of surgery.
Thank you Allen, I was hoping you would weigh in. The UO mentioned a research trial he is associated with on removal + radiation. So there you have it.
I recommend you talk to Irving Kaplan at Beth Israel Deaconess. If they don't do brachy boost therapy, ask him who does, especially anyone who does HDR brachy boost therapy.
My MO is Dr Mark Pomerantz, will mention your name next visit. As usual, his assistants (students) at the start of visit, takes notes, asks questions. then Pomernatz shows up about 15 minutes later and takes the time to explain the treatment and why it was personally chosen in my case.
Dr Pomerantz knows me best as the patient nagging for intermitting ADT...
I am part of a support group that meets once a month for men with prostate cancer. You would be most welcome to join us. We have been ranging from diagnosis and treatment 18 years ago to just-diagnosed. All struggle with the challenges of making "right" decisions and living with the consequences.
I am part of a RI support group that meets once a month for men with prostate cancer. You would be most welcome to join us. We have been ranging from diagnosis and treatment 18 years ago to just-diagnosed. All struggle with the challenges of making "right" decisions and living with the consequences.
I wish had knew about "Brachy boost therapy", when initially diagnosed 5 years ago, would have done it for sure. But, fell into the Urologist Surgeon's trappings, even the second opinion from Dana-Farber backed the initial procedure for surgery with GS 6, PSA 6. Did not do the surgery, unfortunately (Dx 5 month ago), PCa metastatic stage 4.
Had the chance to take charge with possible cure, now working on overall survival.
I'm now with Dana-Farber, but no referrals, picked the Oncologist myself from "self-directed" research.
Hi Mets, interesting that you have mets within 5 years with your G score of 6. I have been fighting since recurrence since 2007 but no mets until 4 LN mets in 2018. My G was 4+3 at DX in 2006 and subsequently doubling time 1.1 years. Only treatment has been RP in 2006 and diet/supplements....no ADT, no radiation.
Have a friend that beat his cancer back with a Gleason score of 6 with diet only. That's why I was surprised by your progression. But everyone is different as you know.
Yes, then the Dx of extensive pelvic metastasis, large tumors, LN involvement PSA 1000+, the pelvic MRI looked liked scrambled eggs - shocking at the very least.
Gleason Score (GS) 6, is not really considered cancerous, studies are looking into if GS grades involve or a higher grade cancer was just lurking. Most likely germline, in every cell, what ignites it, nobody knows.
Studies for somatic mutations are in infancy stages, Whole Genome Sequencing (WGS) is becoming mainstream, now if we can only figure the data...
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You made the best decision you could with the information at hand. So did I. We live the with consequences. We go forward.
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I'm with you on that, believe we're born with that date, perhaps with some variance, and without outside forces.
This is an open commentary forum, all posters have levels of contribution, all the best...
You should get a second and even a third opinion if needed. I think the most important thing you can do is interview oncologists and all doctors involved and to be confident that you agree with their game plan. Personally I do not have the degree and experience to steer you, but the better you are informed and the questions you ask will help you for a long time through this journey and that includes experience from the men and their support on this site. You can look up my journey and I know it was the right choice for me and I am here today thanks to making the right decisions with who I picked for my Urologist, my radiologist, and Oncologist. Also please keep in mind the distance you must travel for appointments. This is a part of your QOL. Think about 38 rounds of radiation Monday-Friday. You want to be as close to home as possible, don’t add burden of distance on top of the disease. Be Strong, Have Hope, Be Brave. Bless you and all of the heroes on this site.
Absolutely, please create your own medical chart, document everything, challenge and re-challenge all docs. It's so revealing if the docs can relate a treatment to your specific case, as oppose to, just reciting some standard of care protocol.
We are not blankets (ref. blanket treatments) - we are individuals with unique biology...
J-o-h-n <----- looks in the mirror.... I'm a hero WOW... wait till I tell my wife and my girl friend. Don't have to tell my blow up doll Dolly, she knows already.
"No sign of spread on bone scan, but they will confirm with PSMA next week. PSA score 81"
The PSMA scan will most likely not confirm that. I know a patient about the same age and PSA value as you mentioned. He got a PSMA scan and that revealed several affected lymph nodes and bone mets.
In that case the therapy will be ADT plus Zytiga. In addition to that I would try to get the radiation that Allan recommended.
Surgeons like to cut. Patients often like to think "they got it all" when the cutting does not get it all. The PSA level plus the age of the patient combine to be in a high-risk pool. As Tall_Allen notes in his blog Brachy Boost seems to have the edge. I would urge a second opinion from someone more familiar with the current recommendations.
You will most likely have to see if you are undetectable after your RP in April unless you find out there is spread with your PSMA test.
My husbands Urologists who did his RP was almost certain all the cancer was contained in his prostate until his 1st PSA test which showed it had escaped. He also was young 53.
Take 1 step at a time as to treatment plan as everyones journey is his own.
Although my husbands G score was 4+3 , and your is 3+4, yours it still is considered aggresive.
Stay connected to us with updates and questions, and stay positive!
I decided not to have surgery, but at first I used 42 radiations. My PSA went way down to 1.2 then 0.05. After 4 years my PSA went up to 72 and I had a bone scan that showed metastases. So I started Lupron injections every 3 months with 1 month of Casodex to stop any Testosterone flair. I also had 30 more radiations on my hip bone area. I stayed on Lupron (Eligard - generic) for 6 1/2 years and stopped all therapy in April 2018. So far my PSA has been 0.006, and my doctor says I am cancer free. I am 73 years old and I have kidney disease, heart disease and diabetes. With prostate cancer you never know what to do for treatment because we all have different cancers, different doctors, different insurances and different other diseases. But some things are in common, choose a therapy and stick with it. When I started I needed 42 radiations and the hospitals wanted $130,000. but I called around and found a urologist that only charged me what Medicare paid, $30,000. When I had the second 30 radiations I had Medicare and they only charged me $42. Life has it's ups and downs and call around to find out what you should do, I got a second opinion and just remember to just keep on truckin'.
Also, I live in Orlando. Ten years ago there were two urologists who were the top in their field. Six months apart they each were diagnosed with Prostate Cancer (PCa). One doctor chose radiation seeds and the other chose to have the prostate surgically removed. They both died one and one-half years later. They each knew everything about excellent treatment, but they had one thing in common - they waited too long to start therapy! This disease can sneak up on you and bite your ass. Yet at the same time it is a slow growing disease so a few months may not be important, but don't put off therapy. Just keep on truckin'.
I remember your dash.... come to think of it we may be related. I guess the RI = Rhode Island (I'm so brilliant). Now to give you my unworthy opinion...
Cranston? Coventry? Chapatchit? Central Falls?.......
Originally went there by simply calling a Lifespan group. Absolutely refused to be seen in Fall River (I’m in Tiv). I build hospitals (or used to build) and checked around, got a top knoch Urologist Dr Renzulli.
He left Brown (for the outsiders, that’s Brown University (heard of it)), for South County Medical Center, I Picked him back up there after firing 2 Brown cronies!!! Used North Main Radiology in Providence. No complaints there but nothing to compare it to either!!!!!
Gota run now but we can talk tomorrow!!!
Jc
I don't know if that assessment rules you out or not but you may want to investigate HIFU and talk to a HIFU surgeon. This 'surgery' involves no cutting other than to insert a supra pubic catheter. BTW, ADT would help shrink the prostate and would be beneficial prior to this surgery.
There WAS a support group at Miriam but it currently is inactive and doing a reassessment of its mission. It was for all types of male urinary cancer. The group I mean is independent and meets the fourth Sunday of every month at First Unitarian Church, 1 Benevolent St in Providence at 7 PM in the Haynes Room. The March meeting will be 2/24/19 and will be entirely on the topic of bladder incontinence and what to do about it.
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Treatment plan
Ending A Long Treatment Plan Sept 1st
Updated treatment plan for progressing MCRPC
Questioning treatment plan for advanced prostate cancer?
PSMA Scan and HU Altered my Treatment Plan
