New Diagnosis - Options??

I guess I'm the first one to stroll along since your post came up. I am not usually the "welcome" man - so I may miss some important points. Suffice it to say that others will be along to fill in any gaps I may leave.

So, welcome to the club that none of us ever wanted to join. You are now in one of the most difficult phases of your journey (at least from my experience). You've been told that you have "IT" but you have been left on your own to decide how to proceed. Most of us have been in a similar place, so I understand your feelings.

I won't try to cover it all (still at work right now. . . ) but do take the time to read the "stickies" addressed to the Newly Diagnosed at the top of the forum. There is a lot of good advice within those threads.

The first thing, and you seem to already have a sense of this, is that with your pathology you do not need to be in a rush to treatment. You have the luxury of time to learn and decide your next steps.

The suggestion of AS, to me, is an obvious good choice for you, at the present time and perhaps for quite a while. You didn't supply the details of your G3+3 biopsy (number of positive cores, percentage involvement, etc.) but I will assume that the two teams advising you that AS is a viable option have seen the data and feel that the recommendation is good for you. If so, many of us here would love to be in your shoes. AS is the only "treatment" path that has NO side effects (other than maybe anguish, if it affects you). I would advise you to get into an organized AS program and stay with it as long as is medically appropriate for you. As long as you stay with one of the recognized protocols and do all of the prescribed follow-up tests, I do not see any down-side risk. All of the mainstream AS programs are designed to alert you as soon as anything approaches your "trigger points" and counsel you into a treatment choice. That treatment can be delayed with no medical risk is like winning the lotto.

Also, at this point, I might not worry too much about the side effects of treatment, as you won't need to choose a particular treatment for a while, if at all. IF you need to go to treatment, you can investigate all of the options.

I do want to mention that what you have heard about "no surgery after radiation" is either out-of-date or over-simplified. That used to be the common wisdom, but now there are a number of surgeons who actually perform salvage prostatectomies after radiation. It is not a mainstream procedure, but it is done. On the other hand, especially with your G3+3 report, if you did need to go to treatment, it would probably be if your follow-up biopsy report went to G3+4=7, and for that pathology most of the modern radiation methods have 5 and 10 year cure rates in the 95-97% range. With efficacy that high, I wouldn't make the surgery/radiation choice based on a backup plan in case of failure because failure happens so rarely.

So. . . I got long-winded anyway. Welcome. I'm sure others will be here shortly to cover any points I've missed.

Welcome dbell and sorry about your diagnosis. about the only downside I can think about regarding AS is the mental anguish that you spoke of. But overall, the protocol is safe when you're in a good AS program and there's a 20-year study that shows that. If you do AS, hopefully you can do it your whole life. But even if you only go a few years before you need treatment, you've bought yourself several years of no side effects. (Plus if you get treated later, there's a good chance treatments may have improved.)

Re the "no surgery after radiation" statement, it's (pretty much) true, but it's also misleading. It implies there's a back-up to surgery, but no back-up to radiation and that's not the case. Both treatment paths have salvage opportunities.

My overall advice is to bide your time, get used to your diagnosis and learn as much as you can. Hopefully we can help.

Michael and "In the shop"...thank you for sharing your opinions...much appreciated!

Thanks GeetarMan! I have read the sticky on new diagnosis ("stickies" are from 2013 for the most part...maybe a bit out dated but still very informative) and have had a second opinion on the slides from MSK Cancer Center! Waiting for results from a more advanced look in to the biopsy (Prolaris study)? looking at the aggressiveness of the cells. Also, will probably have a Prostate MRI before diving into AS just to confirm it is the right approach at this time!

Post Edited (dbell) : 11/30/2017 7:07:39 AM (GMT-7)

If you decide on AS, consider getting a mpMRI with endorectal coil and MRI guided biopsy. You may also want to consider genomic testing such as Prolaris. This should give you the best view of the volume and potential aggressiveness of your cancer. I had started down this path before I decided on surgery.

For me, the main reason for choosing surgery was the fear that I would miss the opportunity for a cure. I knew that I could not live with the knowledge that I had something growing inside me that could potentially kill me when I had a good chance to cure it. My family and my urologist and GP were also supportive of my decision.

I wish you the best in whatever you choose and we’re here to support you when you need it.

Jeff

JeffM said...
If you decide on AS, consider getting a mpMRI with endorectal coil and MRI guided biopsy.

You might want to see if an apron coil can be used, instead. Johns Hopkins stopped using the endorectal coils when they went to the 3T machines. The ERC's are EXTREMELY uncomfortable for the patients, and JH did not see a significant enough advantage in image quality to have their patients endure that ordeal.

I'm glad you found this site and I'm also believe you're very fortunate to have medical teams that presented AS. Far too many low risk guys only hear surgery as their best treatment option. For low risk guys the biggest challenge is filtering all the information to find out what's best for them.

It both misleading and frightening when you hear "if you have radiation you can't follow it with surgery if you have recurrence". It falsely implies surgery is the best option when all the data suggests that surgery and radiation have equal cure rates for low and intermediate risk guys. Surgery and radiation do however have very different risk factors. It's not possible to find a single best treatment for everyone since what we value and our own prior medical histories are so different.

With the diagnosis you have it appears there is no rush to do anything but keeping learning investigating and asking questions. This forum is a great place to do that. Good luck and keep posting.

dbell -- see my stats in my signature below. After 9 (!) years of an up-and-down PSA (from from 4 to 7) and four negative biopsies, I was just diagnosed this past August after my fifth biopsy. My urologist is part of MSKCC in NYC.

After meeting with both a surgeon and a radiation oncologist (who both recommended AS), I decided to go the AS route. Yes, there is anxiety, but I'm trying to keep my head focused on the immediate without being overwhelmed by too many of the long-term "what ifs"...

I've got a PSA test scheduled for February and then a confirmatory biopsy happening shortly after that. I'm just focusing on the results of those two procedures, and then will take it from there...

Hope4happiness, I am also seriously considering the MSKCC - AS program. Recently met with a surgeon and RO at MSKCC in NJ. They seemed highly knowledgeable and on the cutting edge of treatment and technology. They made me fell like "hey we got you"...which is reassuring! Unlike my other consult, MSKCC told me what I can do as opposed to what I can not do ( was told, no surgery after radiation etc.)! MSKCC also are specialists in Salvage Radical Prostatectomy!