Just diagnosed. 2 legions. 15 out of 19 sample positive. Most 3+3 few 3+4. Went to see drs at MSK in NYC. Surgeon says surgery better. RO says radiation better( seeds or beam or both)
I'm loss on what to do.
Any help appreciated.
Just diagnosed. 2 legions. 15 out of 19 sample positive. Most 3+3 few 3+4. Went to see drs at MSK in NYC. Surgeon says surgery better. RO says radiation better( seeds or beam or both)
I'm loss on what to do.
Any help appreciated.
Hi, my dx was exactly 1 year ago. Results: Gleason 9 stage 3(no mets). I'm also being treated at MSK. Only met with my RO (Dr. Shasha) and so far I've had: HDR Brachy, 25 days of IMRT and ADT (currently Zytiga and prednisone). As I have mentioned in previous posts, I have breezed through the past year, no side effects, except for libido loss and ED.
However, I'm 70 and you're only 51. Explore all treatment possibilities. You have a lot of productive years ahead! I Just read Tall_Allen's link and its spot on.
I chose same treatment as westof for t3bN1M0 + SV -- HDR-BT + IMRT + ADT. No SE's. Almost done with 5wks IMRT. On ADT, Zytiga/Lupron, for 18 mos.
If my lesion was still contained, I may have considered surgery, but glad I took the radiation route now.
I think your experience of surgeons recommending surgery and radiation oncologists recommending radiation is common. Some of it may have to do with financial concerns but I think a lot of it is genuine belief in their own capabilities and technologies.
Personally, I think that a top surgeon will outperform an average rad onc, and a top rad onc will outperform an average surgeon. Both technologies work. Both can fail if done poorly, or if the cancer has already metastasized.
How do you tell who is really good when you're not an expert in either practice? Ask around here if anyone has used the docs you're considering. Look them up on Pubmed as Tall_Allen suggested in his blog post. Also use some of the same methods we use to judge people we meet in our own and other professions. Does the doc listen? Does he answer questions thoughtfully? Do his explanations make sense? Does he at least sound honest and committed to his patients? Does he take his time with you?
For myself, I chose radiation - mostly because the only surgeon I met did not impress me at all while the two rad oncs I met both impressed me a lot. However I also had reason to believe that the cancer had penetrated outside the prostate itself and the rad onc was proposing to radiate around the prostate as well as in it. It worked out for me, but I know a lot of men for whom surgery worked out too.
Best of luck.
Alan
I like the idea of the cancer being "removed". Its good that you seem to have caught it early.
Sorry to hear of your diagnosis. The key is to do your research on the treatment options, side effects, pros/cons, and so forth. It took me about 4 months to come to a decision and it took quite a bit of research - online searches, books, journal articles, PCa support group. I chose RALP but this is a highly personal choice and certainly is not the best choice for everyone. I found it helpful to get a medical oncologist added to my team, hopefully one with PCa expertise, who can be a sounding board for your treatment decision. I also got 2 additional tests done - mpMRI and a genomic test (Decipher) in order to get as much information about my cancer as I could. Good luck.
I understand your situation—the questions can feel unanswerable. But I can tell you if you research the available treatments and become your own advocate you will find the right solution for you.
I had nearly the exact biopsy, PSA and situation. I am also 51. You are an ideal candidate for a variety of radiation mono therapies that offer very effective results and little to no side effects (from my experience & based on many legit studies).
The surgery is a very big deal and with the possibility of life changing side effects. Not to mention, the kind of side affects that will dramatically affect quality of life for a young person.
I had a surgeon nearly threatening me to get into surgery as quickly as possible (he sent me a certified letter telling me the consequences of not going into surgery ).
I spent a lot of time interviewing a variety of top radiation oncologists. I can only say I’m grateful I decided on HDR brachy mono therapy. I have two doctors I can confidently recommend in either LA or Northern CA. There is someone here on this forum, Tall Alan, who had good results with a beam therapy some call “cyber knife” by a doctor who invented this targeted HDR beam therapy out of Stanford ( and is now at UCLA). I probably would have gone this route but having a higher quantity of cancerous cells in my biopsy, I went with a mono treatment that had more 10 year studies for my particular case.
Once I had chosen the path of radiation it became the dilemma of which particular route to take, whether that was low dose rate brachytherapy seeds or the high dose rate monotherapy. It was ultimately a meeting I had with one of the leaders in pioneering HDR Brachy, Dr Dimanes at UCLA, that gave me the feeling and confidence that this path would yield my best results. I ended up finding a former student of his, Dr Wang in my health plan (Kaiser Permanente), who works out if Kaiser Santa Clara. Dr Wang did an amazing job and I’d recommend him highly.
Everyone is different — I can relate to those who really want to have the prostate removed and get everything out of there. But when weighing the pros and cons and the similarity of the results of a lot of these treatments (whether RP or RT), I’m highly confident that radiation was a better option for me as a 51 year old.
Please message me directly if you need any further information, phone numbers, etc.
Keep reading, researching and talking to doctors. You have time to make the right decision for you. And just when you feel like you’re swimming in too much info, and too many options, the answer will come to you. Once you have all the info you need, listen to your gut and pick the doctor and treament you feel is right.
Whom did you meet with? You see the conundrum--the doctors will recommend what they know best. Your situation is very similar to mine. You may even be a candidate for active surveillance. I will admit a bias--a patient of mine (I'm a dentist) had radiation and then had a recurrence and had salvage surgery, which was a disaster. I'm reasonably sure that his result was an outlier, or maybe just bad treatment. But it was enough to bias me toward surgery. I had laparoscopic (non-robotic) RP/PNN last September at MSKCC. Surgeon was Dr. Touijer. I don't regret doing it. Took a while to regain continence, still have some ED. Your age may be an issue too, re: possible sequellae. In Peter Scardino's book (former urology chief at MSK) results for recurrence are the same for RT vs. RP for the first 15 years, after which surgery has a slight edge. But these are pretty old statistics.
Hey, Tall Allen--do you have more recent statistics?
I didn’t realize long term results were the same for RT and RP.
I heard a surgeon say that surgery after radiation is more difficult.
Thanks
I think Scardino's book was from maybe 2005 or so. I have the book at my office--maybe I'll see if I can find a reference when I'm in the office on Sunday. In any case, it's well over 10 years old, which makes the information rather obsolete. Unfortunately you can only really evaluate "cure" rates in the rear view mirror, and that takes a lot of time, and certainly there have been advances in both surgery and radiology in that time. But yes, surgery in irradiated tissue is always more difficult, because you really compromise the blood supply and healing is much slower.
Dentaltwin,
I just posted results below from this study showing patients treated with radiation were 2x as likely to die of pca than prostatectomy patients.
webmd.com/prostate-cancer/n...
I also just saw my urologist who said surgery has a 50/50 chance of resulting in ED (though he didn't have exact numbers for local surgeon he refers to).
I'm certainly not going to argue against surgery--in fact it's the way I went. But there have been conflicting studies that will support any blanket position, a situation that Nam dismisses as "confusing"; predictably, asked for commentary, a surgeon supports this paper while a RO dismisses it. I forgot to look at Scardino's book today--I thought it telling that he as a surgeon in fact gives what is a very even-handed treatment of both surgery and radiation. But Nam himself gives the takeaway: "But prostate cancer treatment is never a one-size-fits-all matter, he added.
"There are times when radiotherapy may be more appropriate than surgery, so it is important that a patient discusses treatment options with his clinician," Nam said.
And again, the landscape of treatment has changed so rapidly that looking at studies that necessarily view the results of treatment rendered many years ago isn't necessarily that useful for someone trying to make that decision today.
Yes, those are good points. Radiation therapy is much more targeted today.
I watched a presentation by a surgeon and a radiologist and, as expected, each thought their method was better and had charts to 'prove' it.
The two points I always go back to are that a) surgery guarantees cancer in the prostate will not re-occur, whereas radiation can't make that guarantee, and b) salvage surgery after radiation is known to be difficult.
There can also be long term negative side effects to radiation.
For me, if / when I have to decide I'm just going to have to accept that ED is a probable trade-off for surviving PCa. Sad but true. At least at that point I can mostly not worry about re-occurrence and take testosterone to maintain libido and muscle mass. Unless I can push my health insurance here to cover a superb out of state surgeon.
Maybe I hallucinated--but looking at Scardino's book I can't find the citation that survival or biochemical recurrence between RP and RT is pretty much equivalent up to about 15 years. He is a surgeon, and does give a pretty balanced view, but still clearly prefers surgery. But he also makes the point that "The quality of treatment may be more critical than which treatment you choose."
Not to burst your bubble, but no treatment GUARANTEES that your cancer won't recur. But depending on the aggressiveness and extent of your tumor, you can (mostly, as you say) not worry. That's been my posture.
Your prostate has nothing to do with your testosterone level, so unless you are on ADT that shouldn't be an issue. ED HAS been an issue for me, but libido has not been.
Thanks for the update.
Yeah, there are no guarantees but my hope of course is that none of the cancer has spread outside the prostate so removing it wipes it all out.
Re testosterone, as someone here said it does feed any PCa so while my doctors think I might have it they won't prescribe T, and I wouldn't want to take supplements that boost it.
I'm not a doctor, but am in a similar boat. If you go with radiation, and end up with a biochemical reoccurance, they would have to do a salvage RP.... Success rate for a cure after a salvage RP is not good. Your safest alternative for a lasting cure is RP. Getting it out provides the statistically safest option I believe based on all I've read. Did you have an oncodx test done? Have you sent your slides to epstein to confirm the 3+3?
If you’re not a doctor than It’s misleading to say that your safest alternative for a lasting cure is RP. There are many factors that weigh into the decision as to what is “safest” when you’re 51 years old and have low Gleason scores and low PSA like myself and LBBeachBum. Active surveillance is still an option for one. Also, there are many studies that show HDR or HDR beam is as effective as RP, if not more effective. And, considering the very rare chance you are outlier, like in this case, you start weighing things like potential side effects of RP and how those affect your quality of life. Depending on who you are and how much you value your sex life, RP may not feel like a “safe” option. Lastly, and possibly the most important, one needs to interview the doctors to come to their own conclusions after doing the research. It’s been brought up here, and was true with me, that if you do your research and then interview the doctors based on that research, you will find their answer that’s right for you. So in the end it isn’t up to us here to persuade others to go one way or the other — something that could be dangerous actually — but rather let our own experiences help others make sense of the many unanswerable questions we face when first getting this diagnosis.
I am a patient at MSKcc. If you're going to have the "walnut" removed... try for Dr. James Eastham at MSKcc. I guess you're in Long Beach, Lonnga Island.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 08/16/2019 5:06 PM DST
Good...If he does.... make sure he opens both his eyes.... He said the only way he would give me a discount is if he could perform the operation using only one eye.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 08/16/2019 5:46 PM DST
I choose RP and that is what the urologist recommended. He thought it was contained as well, but the pathology report showed a 15 mm positive margin and an EPE. After the RP, I reluctantly agreed to ART due to the positive margin and the EPE. Someone can correct me here, but I do not think a Urologist can be 100% certain that the cancer is contained with a biopsy. Even the Gleason can change once the pathologist inspects the removed prostate.
LBBB, I went through the same dilemma, 54yo, felt like I was in the prime of my sex life, then bam - CA. 10 of 14 pos bx. MRI - CA was contained in capsule. I did lots of research and my urologist was a major part of the decision. He encouraged me to seek other opinions, even other surgeons and radiologist and to get on forums to seek info from other CA patients. I had surgery to remove the prostate and check surrounding tissue, no spread, lymph nodes neg.
Here is the rub.. you are young, if you do radiation, yes you may get rid of the CA which is the objective, but if you don't, surgery will be more difficult to spare the nerves at that point after radiation. Also, with radiation, in my research and asking the radiologist whom I trusted, you will not have the immediate ED, but it comes on later - that it is irreversible bc some of the nerves are effected by the radiation. With surgery, the earlier in the CA diagnosis, the better, bc the nerves are not innervated by the CA yet??? (greater chance the longer you wait) So, if nerve sparing surgery is the option??? for me, I chose that, yes I had immediate ED, but a better percentage of men with nerve sparing surgery get full function back within 2 years. I have not yet, 4.5 months out, taking 5 mg tadalafil daily, I use the pump on days I do not inject (about 2x a week) I use bimix- (trimix causes a lot of pain for me). I get a 2-3 hr erection, marathon sex as long as my wife can stand it... find the best surgeon you can, ask how many nerve sparing operations he has done (robotic). I know everyone is different, but if you are in good health otherwise, get that CA out...nothing is a sure thing, but you are doing the best to get informed. good luck in what ever you decide.
TH
Great answer! You laid it out for him, warts and all. I had some return of potency after a little over a year with Viagra, but only with it. But I'm 70. This fellow (and you) is only in his 50s, so his chances of keeping potency with nerve-sparing surgery is better. BUT. He needs a surgeon with LOTS of successful RALPs under his or her belt!
Do your research! It's your body, your choice. An informed decision will be the one that is right for you. That said I recommend the book "100 Questions & Answers About Prostate Cancer," by Pamela Ellsworth, MD. It goes through the whole thing from anatomy to diagnosis, treatment options, side effects, complications, everything. From your brief description, it sounds as though surgery or radiation are the most obvious choices. Each has its own benefits, risks, and side effects. Personally, after research, and with Gleason 3+4 after biopsy, I chose RALP surgery. It made sense for me to get rid of the offending organ (gland): the prostate. Both of the 2 choices you are considering will change your sexual (and continence) life to one degree or another; but they beat the alternative in the case of aggressive PCa, and yours is in-between: semi-aggressive! After surgery and dissection of the prostate and surrounding tissue, my diagnosis went from 3+4 to 4+3 Gleason--which is a big difference in terms of prognosis actually. An advantage of surgery: you find out exactly what's going on in there. Still, radiation may be the best for you. That's why research is essential. You have started by seeing both a surgeon and a RO. I recommend that you see a general clinical oncologist with lots of PCa experience. Best of luck. Sorry you have to be part of this "club."
I found this 2015 study of 119,000 men with localized pca (no cancer outside the prostate) comparing radiation vs. prostatectomy and found those in the radiation group were 2x as likely to die of pca. They were also 50% more likely to die sooner from any cause.
Thank you all for all the info.
Seems like there is a trade off no matter which way I go. Both stats are very similar. Seems RP comes with more incontinence and ED and RT comes with more incontinence and bowel problems. All are important for me especially ED being I'm only 51 and still having fun.
Has the radiation therapies advanced that quickly in the last 5 years enough to make a huge difference on all of these and lowering percentage of reoccurrence?