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Posted 8/14/2018 2:57 AM (GMT 0)
Don't be scared by the "annual biopsy" threat. I am in that program, and haven't had one in over four years. Once you settle in, and stay stable, they will not insist on the biopsies.
Posted 8/14/2018 4:14 AM (GMT 0)

Bob said...
The life expectancy aspect is that I'm looking at 20 or more years and the likelihood that at some point in the future the PCa will have to be treated. There SEs are a risk, but given my current situation the likelihood that treatment will be effective is pretty high

If you read the link I gave you, you will see that there is no evidence of downside to getting treatment later compared to now. In fact, you have more years to live with the SEs of any treatment. The likelihood that treatment at the age of 25 would have low SEs as well, yet you would laugh at a 25 yo who pursued prophylactic radical treatment. Age is not an indication for treatment.

Since mpMRIs became popular, many institutions (not JH) have adopted a flexible biopsy schedule. There is no evidence that one is better than the other.
Posted 8/15/2018 5:09 PM (GMT 0)
Really ...listen I might be harsh but I will tell you what ....I didwayyyyyy to much research and like an idiot I made the wrong decision ....listen,,, this is it period ..step 1. Surgery surgery surgery...80 % chance take it ...then if you need radiation IF IF you need it then do it ....don’t be like me I soo regret skipping step 1 ...I did the combo treatment. EBR and hdr .....I regret it sooo muchhh ..I hsve to take flomax to pee.....my bowels are a mess ....I hsve foot pain now ...bloody hemmroids ....what. All because I didn’t do surgery... am I scaring your...I hope so ...I wish someone scared me ....what’s the worst with surgery...it fails ..then radiation ...or u may leak ...I tell you what I would rather leak then not be able to pee unless I take flomax ...and then ...don’t forget plan B ..that’s right plan B ...radiation has no plan B. .....ask your RO what plan B is If it comes back Like in the nodes ......oh yeah. ADT fir 18 months wonderful .....you can’t take it out once you radiate....they say they can ...in like 6 places in the country ... surgury...hospital overnight ..home with catheter fir 10 days....then you Lee like a race horse ...but maybe keak ...you get stringer and in 6 weeks. Blood test and hopefully .02 cancer free.... radiation takes up to 2 years to go down and then the bump ....ask your RO about the bump .....do the surgery ......don’t have regrets like me ......I didn’t do surgery because I never been in s hospital and I was afraid and RO mislead me a lot
Posted 8/15/2018 6:46 PM (GMT 0)
Stan

Thanks for the info. The UO, however, said he would not recommend surgery because my prostate is small (only about 26cc) and given my current problems with incontinence--he was concerned that I would be completely incontinent after the surgery. I was definitely leaning towards surgery--but he made a good case for not doing it--and he is one of the leading Urological Oncologists in the country. He did refer me to an endocrinologist who will get me restarted on T therapy, which made me happy.
Posted 8/16/2018 3:39 AM (GMT 0)
Change your Dïët do active surveillance
Posted 8/16/2018 4:02 AM (GMT 0)
Normal size is 25cc
Posted 8/16/2018 4:44 AM (GMT 0)

Bob in Elkridge said...
Stan

Thanks for the info. The UO, however, said he would not recommend surgery because my prostate is small (only about 26cc) and given my current problems with incontinence--he was concerned that I would be completely incontinent after the surgery. I was definitely leaning towards surgery--but he made a good case for not doing it--and he is one of the leading Urological Oncologists in the country. He did refer me to an endocrinologist who will get me restarted on T therapy, which made me happy.

A number of us have gone the RT route without much problem. It's certainly an option you should consider.

Andrew
Posted 8/16/2018 11:52 AM (GMT 0)
Andrew

Thanks for the encouragement and perspective.

Stan

Thanks for the perspective on the size. I think he meant small in terms of a prostate with PCa coupled with the BPH-symptoms that I'm experiencing. That also made my PSA density higher, .30. Who says size doesn't matter? I also got the sense, although I am not sure, that it makes the surgery harder.

Bob
Posted 8/16/2018 1:07 PM (GMT 0)
I was much higher risk than you. I used a combination of High Dose Rate brachytherapy and IMRT external beam radiation coupled with a few years of ADT. I have no negative treatment side effects and continue to have undetectable PSA.

That is far more treatment then you would need. Have you specifically met with both a radiation oncologist that specializes in SBRT and one that specializes in HDRBT? Each would be very appropriate. You could do SBRT in probably 5 fractions. HDRBT monotherapy may only require one procedure. These would be very easy and convenient treatment methods. Surgery would be far too invasive and no more effective for cancer control at your risk level.

As TA says, you have plenty of time to research and decide how and when to treat. It is vital that you be assessed by specialists in each treatment method. Don't let any doctor speak for a method they don't specialize in.
Posted 8/18/2018 12:46 PM (GMT 0)
JNF--

Thanks, I will look into both options. I really appreciate the insights and alternatives to what the medical professionals have presented so far.
Posted 8/18/2018 3:29 PM (GMT 0)
Like JNF, I'm a successful graduate of the IMRT-HDR brachy program. But...given that the fact you're arguably within AS territory based on your stats, it does seem like the combo treatment is on the aggressive side. At the same time, I totally understand that you want to whack this thing hard and a treatment decision is very personal. Just offering my thoughts and hope it's helpful.

BTW, I would say that the only noticeable SE that i have is that I don't pee as strongly as I used to--maybe 60-70% of previous. I take a Rapaflo for that every 4-5 days and that pretty much takes care of it.
Posted 9/6/2018 5:27 PM (GMT 0)
By way of update on my progress

I have just returned from a week long cruise across the Caribbean and Gulf of Mexico where my wife and I have finally come to peace with the way ahead.

Yesterday I saw my GP to go over everything--from start to finish, and place the recommendations into context. I have been amazed at how doctors seem willing to take the necessary time to discuss and investigate things as I have been going through the process. I think I have a good team which includes my URO, RO, surgeon, endo, and GP. I have seen them all in the past month.

I have decided on the EBRT (photon)--which aside from AS was really the best option left since I am not a good candidate for surgery or brachy.

I know many would choose AS, but I have a hard time wrapping my mind around waiting and watching PCa continue to develop or not. I have lost too many friends and relatives (including a 23 yo nephew) to Ca. I'm an action oriented guy and I want it gone.

So next week I get the markers injected and two weeks after that the simulation followed by the treatment beginning likely in early-October.

Thanks for all of your support and ideas. They have been helpful and caused me to question each of the medical professionals and their recommendations from a knowledgeable position. My GP looked at me yesterday at one point as we were discussing the options and asked me, "how much of this did you know three months ago?" I looked at him and told him--absolutely nothing.

Knowledge is power and this board is definitely powerful.
Posted 9/6/2018 5:29 PM (GMT 0)
I felt so much better when I made a treatment decision! Congrats on doing so and all the best with your treatment!
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