G9'er Update

Hi All,
First, thanks to everyone who has replied to my earlier posts. It really does help connecting with folks who have dealt - or are dealing with - high risk prostate cancer. It has been a bit over a year since I was diagnosed. Had RP in September, G9, T2C...at least (that is what the pathology report said), positive margins, yada, yada, yada.

First, PSA check in January. Non-detectable. Same for April. Today, 0.07. My urologist at Dartmouth basically said adjuvent radiation - which I think he meant salvage radiation - with HT. Had and appointment with my Rad. Onc. later in the day. Said that salvage radiation is what is needed and he hoped that increase in my PSA was due to the remaining tumor in my positive margins growing. He could not rule out that mets had spread.

He also said HT. Man, I have to be honest, HT does not sound appealing. Recovery from surgery has been good. Incontinence gone and Big Jim and the Twins are springing to life. How do you way the "quality of life" vs. the "quantity of life?" I know that BCR is hard to predict but given my pathology, it is probably going to happen - as high as 85% in the next five years.

So, given my aversion to HT - it has to have negative affects on the rest of your body - what advice can you give me. I understand that I am writing this from a more emotional than rational state, but I do like the advice given to me on this site.

Peace,
Johnny 99

One year on ADT is very doable...Over this time-span, the effects will be pretty much limited to hot flashes and and some impotence problems if you don't have them already...After the year is up, recovery from the ADT is a fairly quick process..A G-9 with positive margins, I would use all the weapons available....More than likely, this is your last chance at a cure...Don't get shy now.....Just my humble opinion..

Johnny,

You are a fairly young guy so you will have a good chance of recovering from a time-limited course of hormone therapy if you decide that's what you want to do. And also because you are young, you will have a longer time to live with the results of your treatment decision. If Tall Allen will forgive me for over-simplifying his information, with salvage radiation but no hormones you have two chances out of five of developing advanced disease in the next five to ten years. If you add hormones that seems to drop to one chance in five. If you plan to live to be eighty then the math says that, on average, adding hormone therapy to your radiation will save you something like five years of treatment for advanced (no-longer curable) disease.

I dunno if you are a Monty Python fan but thinking about options for the treatment of advanced prostate cancer always remind me of their original "Spam" skit from their Flying Circus TV show.

/youtu.be/anwy2MPT5RE

There are dozens of treatment options with more of them coming out all the time. There are the first-line hormone therapy drugs, and there are a number of advanced hormone therapy drugs, or you can do HT plus chemo, or HT plus spot radiation of metastases, or advanced HT plus immunotherapy drugs, or more than one kind of HT at the same time, or HT plus chemo plus spot radiation, or HT plus advanced HT plus chemo with still more HT. There are hundreds of combinations to try with more coming out all the time. But if you don't like spam -- if you are averse to hormone therapy -- then you may find the menu unsatisfying.

So when I faced the same decision you are facing now I decided I could put up with a couple of years of hormone therapy -- I could choke down a big serving of Spam -- to avoid winding trapped in the restaurant with men in horned helmets chanting about hormone therapy options.

My path was worse than yours. I waited to PSA of .2 twice before SRT and then had only 6 mos. of lupron and rad to bed only. My + margin G was 7 but I still had BCR quickly. I would suggest adjuvant RT to bed and all pelvic nodes and a year of ADT3. Don't play around with G9 pca 😡 You only get one kill shot!
Bob

This is to Bololidat,
G9 was 4+5 after RP. Three months earlier it was G8 - 4+4. Two positive margins, according to my pathology report, that were about one centimeter long each. There was some concern that the tumor left the gland but there was no definitive evidence other than it undermining the tissue at the edge. I had 22 lymph nodes removed and they were clean. Likewise, PSA jumped from <0.3 to .07 in three months. Not really unexpected given my circumstances.

This is to all others who responded:
THANK YOU SO MUCH. Boards like this, with folks going through the same experiences, give me strength. I know - well, maybe I don't - that we are not doctors but shared experiences do help the decision making process.

Okay, I have to ask this. Have any of you tried non-Western medicine for the treatment of prostate cancer. I want to research is there are holistic methods that would work the same as HT.

Thank you, again.

Johnny99

I ran into a guy at Dattoli who had tried diet and other holistic methods ; a year later he was at Dr Dattoli with rib and other Mets and PSA in the 80's to get imrt and brachy. I don't believe any non traditional treatments have proven to work . Maybe with less aggressive PCa ?
Bob

There was no way I wanted any part of ADT (hormone therapy) but the radiation oncologist at MD Anderson said no radiation without ADT. Okay Doc - you know best. In all candidness, it was a miserable eight or nine months but I dealt with it (the side effects took three or four months to disappear.) My Doc prescribed Effexor which really helped moderate the hot flashes.