I really appreciated all of the great information this team provided when I was trying to decide between surgery and radiation. In the mean time I did a consultation with PCRI and spoke to a top radiologist at Memorial Sloan Kettering, who I'll call Dr. Brachy. During that consultation Dr. Brachy discussed the benefits of Brachy + EBRT + ADT and also the potential negative side effects of surgery or radiation. At that point with all the knowledge I had at the time including what I learned from Tall_Allen and others here, I was ready to go forward with a radiation treatment protocol that included brachyboost, EBRT and ADT.
However, even though I'd had an array of diagnostics, for some reason no one had ordered a prostate MRI which Dr. Brachy did do. I had my MRI two weeks ago and met with Dr. Brachy again this week along with a surgeon at MSK. After looking at my MRI, Dr. Brachy's view was quite different. He told me essentially that I am not dealing with a tumor in my prostate, but rather a former prostate that isnowall tumor. As a reminder I am Gleason 8/9 (all 12 cores) with a PSA that has been hovering around 25 since October. I am paraphrasing Dr. Brachy but he essentially said, "I rarely recommend surgery but it does happen. In your case you have a ball of cancer where there used to be a prostate and you really need to get it out of your system to help ensure your survival."
Even though my PSMA and MRI do not show any metastasis there is one comment on the MRI report about "suspicion of multi-focal extra-capsular extension" which the team at MSK interpret as likely activity in the prostate bed. So Dr. Brachy's full recommendation is to start ADT immediately, then surgery, then EBRT and continuance of ADT up to 24 months in total. To be clear he is not saying lets do surgery and see where your PSA goes afterwards but rather surgery, 6 weeks of recovery and then EBRT all the while staying on ADT. I guess the thing that really carries weight with me is the fact that Dr. Brachy is a well-known, top radiologist, does brachy therapy all the time, heavily promotes radiation as treatment protocol for Gleason 9 cancer but in my particular case doesn't believe we can get on top of this with radiation alone and strongly favors surgery. He said, "I'll do radiation if that's what you want but I am not convinced its going to cure you given your particulars".
I would be interested to hear your feedback on this latest information. Thank you in advance.
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Sounds like a plan! The fact that you didn't have an MRI and then you did have an MRI and the treatment recommendation changed radically between, is kind of scary. It's a reminder not to make assumptions. And that safe information gathering can be very important.
My husband is also being treated at Sloan Kettering. All of the doctors there are top notch, so if Dr. Brachy is recommending that course of treatment then I would go with the recommendation. They have some excellent surgeons there who perform the robotic surgery.
I had two mpMRIs before my decision, looked at carefully by various methods radiation and focal therapy docs. All recommended surgery. At that time nine years ago PSMA PET was not yet available. I chose to not do ADT and standby that decision- I do acknowledge others advise against my approach. I did do salvage RT followed by salvage extended lymph node surgery. If I could do it over I would have the biospy procedure done at the start of my ePLND done at the start of RP. This is immediate frozen biopsy of common illiacs - and if positive for cancer extend the lymphendectomy. My goal was and remains to defer/delay ADT ( of course those that speak against this approach). Hope this helps. All the best!
After RP I consulted with 3 ROs. One of them would not irradiate earlier than 9 months post RP. The other two would consent to 6+ months healing time. Your Dr Brachy and his 6 weeks is looking for trouble.
If they are going to irradiate after surgery, why are they going to do the surgery?
They could treat the prostate with radiation and the do a brachy boost , and also irradiate the whole pelvis (the cancer is outside the prostate),,
The fact they do not see any lymph nodes affected it doesn't mean that there is not cancer in them. They could have been invaded and the mets are too small (< 4 mm) to show in a PET/CT.
The plan to do radiation after surgeryis because they can't be sure there aren't microscopic or "too small" mets. I guess I didn't make that clear. Brachy is unlikely to be successful in my case since there is almost no prostate left to save. Dr. Brachy is my third RO opinion already and the only one of the three that suggested a plan that takes into account the current state of my prostate.
I am undergoing treatment at MSK. We are all an N of one. I would trust MSK’s recommendations. Prostate size does impact the ability to have Brachytherapy. Please be aware that if you have EBRT at 6 weeks your incontinence recovery will likely remain at what level it is at at the time of starting radiation. This information was provided to me by an MSK Surgeon during my treatment consultations.
Thank you TylexGP And I had the timing wrong for radiation. Please see my reply to TA below. Thanks for pointing this out as it motivated me to review and clarify timing of radiation based on the Dr.s notes.
The concern I have with adjuvant radiation is this: the surgeon will have to "cut wide" to get any cancer that may have penetrated beyond the capsule of the prostate. This means that there will be no sparing of neurovascular bundles, and maybe not even of the bladder neck. This assures impotence and possibly permanent incontinence. (Ask for a pathologist standing by to look at frozen sections.) Adjuvant radiation impairs healing. Perhaps you can delay radiation with ADT, which you will be taking anyway. Your cancer is not going to spread during 7 months of ADT post-prostatectomy, and the break will give cut tissues time to heal.
My guess is that, based on your high PSA, some cancer will be found when they sample a few pelvic lymph nodes during your prostatectomy (even if it is too small right now to show up on a PSMA PET/CT).In that case, you will need 3 years of ADT and 2 years of abiraterone along with adjuvant whole-pelvic radiation.
Thank you Tall_Allen. Your comment about the brief time I reported between surgery and radiation is helpful and lines up with concerns of others like Justfor_ . This has inspired me to go back and very closely read Dr. Brachy's notes and I realized I was conflating two statements he made during the consultation which led to an assumption on my part about the timing. During the consultation he made two separate statements "we'll do surgery and then when you recover we will start the radiation" and "you should be pretty well recovered by week six after surgery". I conflated that to mean radiation would start after six weeks.
Thanks to your comment, which worried me, I went back to Dr. Brachy's notes and found he is recommending radiation begins "at such time that urinary function plateaus". And in fact I now see he has scheduled a new consultation for mid-August. This means that if I have surgery mid-March, we won't see each other to even discuss radiation for at least 5 months, which may align with your comment about 7 months of healing time.
Thank you. I had this wrong due to the fact that I was trying to take in a lot of new information all at once. Your's and other's comments pushed me to revisit the Dr's notes and now I feel much better about the timing. Once again this forum has been helpful to me getting the process and timing straight in my noggin.
Everyone reacts differently, we are all obviously " unique" , but just want to let you know, I had surgery, side affects were tolerable and I got over them, no biggie. But, they didn't get all the cancer, not " clear" margins, so 3 years later, re occurance. So then, radiation and 6 months of Lupron.
For me, all the side affects were tolerable, including the 6 months of hormone treatment.
My point being, you often times only hear from those who had very negative experiences with 1 or all 3 of these treatments ( surgery, radiation, and hormone therapy), but I want you to know, for some of us, very tolerable and well worth doing each of the three treatments I had.
I know if I had been on hormone treatment longer than 6 months, I might of had more adverse side affects, and I may have to deal with that in the future. But if needed, will do more Standard of Care hormone treatments, and try to mitigate the side affects with exercise, diet, and Prayer ( or meditation).
We are with you in your journey, TA and the others on this web site are so very helpful, they have been invaluable to me!
And your age is ?..............BTW it's ok to mention your doctor's real name. Lots of stuff coming down the pike right now.......but remember one day at a time.....keep posting here.........
Thanks also for the tip on naming the Dr. I only refrained because I was paraphrasing and didn't want anyone to potentially hold him to my interpretation which we also found included an erroneous assumption on my part. Dr. Brachy is Daniel Shasha and the surgeon I spoke to is Eugene Cha.
I don't know about these two docs........ but I do know you're at one of the best Ca hospitals in the world.....I've been a patient at MSKcc since 2002.....I wish you well..... BTW my Oncologist at Sloan is the best (Dr. Michael Morris - Kimmel Center 68th and near First Ave)....... Unfortunately I don't think he's taking on new patients..........but you never know and doesn't hurt in asking? BTW I was diagnosed at 64 and I'm 87 now....My surgeon was Dr. James Eastham using the old method then (cut and open)....
Thanks JOHN. Wow, I am glad things have worked out so well for you. You've won the race at 87 for sure...even beating out all the other potential insults to our mortality!
The MO I spoke to at MSK is Wassim Abida also at the Kimmel Ctr. All three Dr.s seem to be top notch but with some variability in "bedside manner". I have heard high praise for Dr. Eastham elsewhere, sounds like he did you right. Do you live in the NY/NJ area? I am in Manhattan at least once a week if you want to meet for coffee some time.
I live in Queens...and it's a bit of a hassle getting into Manhattan. Legs are not what they use to be.........But if you're ever in Queens.....we can meet for coffee....Take care.
Doesn’t the PSMA result rule out "suspicion of multi-focal extra-capsular extension"? Have you considered an Axumin scan in case your cancer doesn’t express PSMA?
You have a very complex case and Brachy would appear to be a good bet if the tumor was focal, or contained to one area of the Prostate, well encased...sounds like you are not dealing with that and that removal of the glad with the Clone Cells is the best long term bet...yes, you will have more complications but the ultimate complication from PCa is dea#h...sorry. When considering surgery experience counts big time...take a look at the outcomes vs the numbers of surgeries performed...its astonishing that over 70% of surgeries are dont by Uro's who do 4-5 a year!!! Imagine...go to a center of excellence and demand to know exactly how many surgeries your doctor has done...dont take a snarly comment as an answer; if it were me I would go elsewhere...get a surgeon who has done 1000's of these!
PS also, after surgery ask for the uPSA (ultra low PSA) assay if your results are that good...its a better predictor of success than the normal PSA assay which only tells you your PSA is <0.10...but in this article focus on Min 10:55! AMAZING results from surgeons who have done 1000 or more surgeries...and this is not that many really if you go to a center of excellence;
Also, is RT (radiation) or RP (surgery) best...here is the best 'mano a mano' I have seen between surgeons and radiologists...listen to this a few times...make the best decision for you!
I got RP and had recurrent PSA; 0.13 at 6 weeks...went straight into PSA for 6 months, then sRT (early salvage radiation), followed by 15 months of PSA...friend, dont let anyone tell you that your sexual health is going to survive this type of treatment...it wont. BUT there are things you can do to maximize your abilities to recover...pray you dont need RT or ADT...if you do then take them...if you dont avoid them if possible. Not going to dwell on this; if you need more info from me send me a private note; I can explain what happened to me and what I should have done (had anyone told me) to have had far better outcomes...
Also, get a Genomic test done of your tumor specimen...Decipher is the best...it will really tell you how aggressive you need to be in follow up treatment...check this out...
I also had a “full” prostate of tumour and it was removed together with all the nerves, which as Tall_Allen mentioned guaranteed impotence but thankfully only slight bladder leakage. The surgeon suspected transference to the removed lymph nodes that was confirmed, and treatment with Erleada/Lupron commenced after PSMA/PET scan showed distant Mets in abdominal lymph nodes. So far, 4 years in with no no changes other than the usual lightly debilitating side effects of the meds. I hope this helps a little. Stay strong and this site is a wonderful arena for advice as well as dark humour.
Thank you Hailwood. Good info given that your case is so similar to mine. And yes MSK Dr's did say they won't be able to spare the nerves. So like you, impotence is guaranteed. Is it the case that due to mets you've been on ADT for four years? If I'm being honest the (anticipated) side effects of ADT is the part that I find most distressing. How has it been for you. What have been the most significant impacts of ADT in your opinion? Thanks again.
Major effects are no libido at all, some slight urine leakage needing no more than one light pad a day, fatigue due to muscle weakness and previous joint issues really prevent any gym work but I work full time, ride a motorcycle daily and manage 2 unruly dogs twice daily on walks. PSA remains at 0.02 and T at 0.5. A lot of fatigue the day after the every 4 month Lupron injection. Surviving so far with what I think are side effects are manageable
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