Say no to SRT until you view this video

Thanks for posting that. I'm going to get my husband to watch it. He has pretty much decided that he wouldn't do SRT (due to substantial quality of life issues resulting from his radiation from a different cancer 10 years ago), so doesn't much see the point in continuing to get his PSA checked. This might give him hope that there are other effective routes to take if he does have BCR.

Viper,

Like you, I do not want SRT if it can be avoided. I've read and know personally of the horror stories from folks who have received damage resulting from radiation. I realize that today's machines are very advanced and with the right doctors / technicians operating them, the risk of damage is minimized. But if I can avoid SRT, my risk of damage from radiation goes from low-risk to no-risk.

I had my robotic surgery in June of 2011. My pre-surgery stats included a PSA of about 5, a Gleason of 3+4=7, and bi-lateral glandular involvement. After surgery, my Gleason was downgraded to 3+3=6 but with the unfortunate finding of a single focal positive margin.

The only time my PSA came back as 'undetectable' was 6 weeks after surgery. Three months after surgery, my PSA had increased to .01. Nine months after surgery, my PSA had risen to .03. Fifteen months after surgery, my PSA had risen to .05. It was becoming clear that something was going on.

By January of 2014, my PSA had risen to most .08 and it was then I started to think that SRT would soon be needed. But I wanted to slow the PSA progression down as much as possible while a brand-new radiation facility was being built in my city. If I was going to undergo SRT, I wanted it to be with the latest machines available.

In February, I started taking Avodart daily. I did not take any other supplements other than a daily Aspirin and a multi-vitamin.

In April, I went for my quarterly PSA test. Imagine my surprise when I found my PSA had dropped from almost .08 to .024, a reduction of 70%. This was the lowest PSA reading I've had since immediately after surgery in June 2011.

It was at that time that I was told that Avodart had a long half-life and I could extend my dosing to every other day instead of taking it every day. Since my insurance does not cover the cost of Avodart for use in patients with PCa recurrence, I'm forced to pay for the drug out-of-pocket. Taking it every other day instead of every day cut my prescription costs in half.

Last month, I had my quarterly PSA test and found that my PSA had increased to .035, an increase of .011 from the previous quarter. I do not know if this increase is reflective of my change in dosage or not. Regardless, I have gone back to taking it every day again and I am waiting to see what my PSA test in October will be. I can only hope that the Avodart knocks my PSA back down again, or at least keeps it stable and from progressing any further. Time will tell.

My entire PSA history since surgery can be viewed using the link in my signature below.

HD - interesting approach. I am in a similar situation but with neg margins. I had RP 4/12 and all was well until Jan 2014 when my PSA hit .1 on standard test. I immediately repeated it with ultrasensitive and it was .08. 5/14 it was down to .07. I had stage 2c with no EPE and neg margins with pre-op PSA 3.5 and 10% tumor. I am not sure its PCA or prostate tissue. I considered Avodart with Myers but his fees are high and they wanted monthly PSA which I can't deal with. Also, what if the level never goes up from here. There is at least some fear that Avodart may simply be hormonal therapy and select out a more aggressive cancer. Then I have taken what might be a benign situation and created an issue. On the other hand I would love to see the PSA go down and avoid SRT. I think I am going to wait in out longer - but again - I realize that you had a small positive margin.

Given my high Gleason and stage I had no choice but to add adj radiation after surgery. Bone mets still appeared, zapped them, and then HT for a period of time.

Currently just taking Avodart and Metdormin

I am starting to freak out over this thread as to the risks of any kind of radiation treatment! Am I missing something? When I chose BT I did so with a huge amount of research and advice from forum members that led me to believe that long term survival rates where virtually the same for BT and surgery.

If logic prevails than survival still means your alive with some up front side effects.

The video is quite interesting and saved should I fail PSA. But the horror stories remind me of my uro surgeon who told me "Brachy Thearapy is the worse thing you want because" followed by by his horror stories.

I was also convinced by my Uro and Rad Onco that my PCa was still in the prostate bed because of the steady but small increase in PSA post RP, and we bet that SRT with ADT would nail it.

I'm finished with the SRT which was uneventful until the last two weeks, when I had to change my diet to reduce diarrhea and anal pain and I am now mostly asymptomatic from it two weeks after the last session except for (a) occasional mild diarrhea (which I don't help by drinking wine), and (b) the need for a nap in the afternoon after playing golf in 90 degree heat! LOL. I'm due for my second 3 month Lupron shot on August 21 and my next PSA test in mid September. I dislike not knowing if the SRT worked until I stop ADT. There has got to be a better way!!

I believe all the worry about SRT is unjustified if done by the latest IMRT/IGRT equipment and by competent Rad Onco and his team and if you follow instructions on having a full bladder and no gas in your GI tract before each session.

By the way there is a cheaper version of Avodart called finasteride (generic proscar) for those of you who think taking that is the answer.

Bob

browntrout said...
I am starting to freak out over this thread as to the risks of any kind of radiation treatment! Am I missing something? When I chose BT I did so with a huge amount of research and advice from forum members that led me to believe that long term survival rates where virtually the same for BT and surgery.

If logic prevails than survival still means your alive with some up front side effects.

The video is quite interesting and saved should I fail PSA. But the horror stories remind me of my uro surgeon who told me "Brachy Thearapy is the worse thing you want because" followed by by his horror stories.

Hi Browntrout,
There is a huge difference between the Brachy seeds and radiation therapy. Very rare that Brachy guys have the horrible side effects (such as secondary cancer) like the radiation folks. You shouldn't worry it's entirely different.

Purgatory
You're situation is not typical and scaring folks off IMRT because you were mishandled is not appropriate IMHO. I'm really sorry for your poor outcome. I just know my rad onco team were very experienced and very cautious during each session that everything was 100% before the session commenced. And I had it done at a small community hospital, but the equipment was the latest and they had many years of experience and listened to me carefully if I had issues.
Bob

Big Mac (Bill) just said:

"I read in a PCa book that 42 sessions of radiation treatment equals the same radiation as 57,000 chest X-rays so it can't be good for your body."

That's a fact, and that's something to think about before undergoing any major radiation event.

For the record, I have no intent to "scare" anyone away from radiation that's truly justified and needed. I feel that I need to warn all men, to do all diligence properly before agreeing, especially if we are talking about salvage radiation. The odds for it working in the first place to give curative hope as a secondary treatment isn't all that high to begin with, without the risks being factored in.

Every doctor I have seen since, has told me similar stories, about patients that come to them with radiation damage, and how RO's typically feel they have the right to walk away from the patients they damage. These doctors tell me its far more common then any RO or radiation clinic would ever admit.

Plus, I am one of the few here, they have been through 2 major radiation events, fairly close together in time. The first one, in year 2000, had its own share of damage from which I am still suffering, in this case, severe radiation damage to all of my teeth, my left jawbone, and all the bones in my upper mouth. And this was the results of having 70 gys. of radiation being properly administered.

It's just not a natural thing to purposely be radiated, its hard on the body, even when everything appears to go well. Just something to think about.

According to my oncologist, the risks alone of developing secondary cancers many years from the initial radiation event is much higher than the stats that the supposed studies on the subject show, as these studies are somehow indirectly put together at the request of the radiation industry. Kind of makes sense to me. For many men, they won't live long enough to deal with any future cancers as the result.

But for the men that get PC at younger ages, those in their lower 40's, they could easily outlive their PC and live long enough to deal with a new cancer.

David

If I'm not mistaken, Dr. Patrick Walsh, a leader in PCa treatment disses on SRT unless the exact location of the cancerous tumor can be identified. He is against the "shotgun" approach of radiation to the entire area where the prostate used to be. It's just too risky with long term issues. On the other hand, radiation can be quite effective when cancer lesions are identified and zapped without the surrounding tissue being targeted. Just my unprofessional opinion, suggest anybody facing recurrence look at what is best for them and simply do not take the word of one Dr. who can profit from their type of therapy. Anybody deciding on SRT should talk with their Dr. about adding HT at the same time. Sloan Kettering has studies showing SRT therapy more successful when the cancer growth is slowed by HT while being zapped.

As for me, SRT is so far down on the list things will really have to take a turn for the worse and all other therapy's fail before I would proceed.

Viper guy
My RP surgeon at JH who studied under Walsh did not recommend doing anything until mets appeared which is Walsh's view. When I asked Dr Tran the head RO at JH he of course suggested SRT with ADT. So it depends on who you ask even at the same institution!
So rather than wait around for mets I opted to try and kill what was left of the beast.