Prostate Cancer Survivors

 

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Re: newbie needs help!!

Here's some good reading that will assist you in sizing up PBT:

http://www.redjournal.org/article/S0360-3016(13)01070-5/fulltext

It's hard to beat 99% success rates for low- and intermediate-risk PCa at 5 years. The side effect profile is fairly stunning as well. These data come from the University of Florida’s PBT facility.

Re: newbie needs help!!

Bioguy:
Your primary concerns appear to be as twofold:
1. Prostate cells remaining alive after treatment, and
2. Side effects.
I doubt there is any published research available that indicates there is a greater chance for cancer cells to remain alive with proton radiation when compared to surgery.
On the other hand if you believe the outcome information described by Bob Marckini in his book "You Can Beat Prostate Cancer..." surgery results in far more adverse side effects when compared to proton radiation.
You are confronted with an extremely difficult decision. I am confident other YANA participants will weigh in on this topic in an effort to help you make a good decision.
Best wishes Don O.

Re: newbie needs help!!

Thank you so much for your thoughts. I really appreciate anyone's opinion on this. I forgot to mention my Gleason score was 3 + 3. My PSA has jumped all over from a low of 2.8 to high of 6.9. I agree that there is no need to rush into a decision. The only reason I found out that I had PC was that I was on testosterone for being hypogonadal. The endocrinologist had me taking a blood test for testosterone and he always had my PSA checked as well. When the PSA started to spike, I got the biopsy. What makes this disease so difficult is that the vast majority of PC patients would not die from PC, even if they received no treatment. I have learned from autopsy studies that half of all men over the age of 50 have cancer in their prostate. Eighty percent of all mean age 80 and over have cancer in their prostate. But the vast majority of men in either group do not die from prostate cancer... and they never even knew they had prostate cancer. Sadly, a small percentage of men (maybe 10 percent or less) have aggressive PC and need treatment to extend their life. However, it is likely the other 90% that get treatment (with all of the terrible side effects) did not need treatment at all. The problem is... we do not know with clear certainty who is in the 10%, so many men error on the safe side.

I read the book by Robert Marckini just last week. It was excellent overall. I commend him for his work. However, I would make two points: One, the book was written in 2006. He seems to overstate the side effects a bit regarding robotic assisted laproscopic prostatectomy done by very experienced, high volume surgery specialists. Two, we do not have a lot of long-term data on the side effects of proton beam therapy. In the short term, it looks very good. If I was older, or I did not need to be on testosterone, proton therapy seems like a no-brainer. But for young guys like me, will I have deal with bladder or rectal cancer in 20 years when I am still in my 60s?

If I am wrong on either of these points, please... anyone... correct me if I am wrong.

Finally, my original question still stands: Which treatment is best for someone like me who will have to go back on testosterone for any quality of life to continue. Do any prostate cells survive proton beam therapy? If the PSA is not zero, there has got to be some prostate cells still living. If some are living, could they be cancerous... or become cancerous... especially as they are being fed testosterone. I welcome all comments. Thank you all so much.

Re: newbie needs help!!

To answer your questions:
The local rate of reoccurrance for radiation to a G6 cancer is less than 1%, about equal to the mortality rate from surgical complications. Although regular prostate cells remain active after radiation all the cancer cells are killed and these normal cells continue to secrete psa. The reoccurrence rates for a G6 surgery is 15% (Walsh and Scardino), All of these are local reoccurrance because there are no systemic reoccurrance for a true G6 as it cannot matastize.
Radiation leaves the prostate "fallow" which means that future cancers cannot grow.

As regards to your treatment choice:
it is a personal decision that must fit with your values and goals. My own philosophy is for low risk cancer choose the treatment with the least side effects and for aggressive cancer side effects should be a secondary consideration. The new results on pencil beam proton are impressive and hard to ignore even though I have been a critic of proton treatment.
If you are not concerned about dying on the operating table then secondary cancers should also not be an issue as the probabilities are about equal.
You should also investigate both cyberknife and brachytherapy as options as their results and lack of SEs are also impressive when compared to surgery.

Re: newbie needs help!!

You may be interested in knowing Marckini is revising his book. He is very responsive to newbies regarding questions on proton therapy.
Best wishes.

Re: newbie needs help!!

Bio,
It is a tough decision, is it not? I am a newby here and to PCa, but I am now experienced in recovering from robotic surgery with lymph node dissection. I am about 14 days out, just pulled the catheter yesterday and still have one JP surgical drain in.

I spent untold hours researching the material on Pubmed, comparing various radiation vs surgery. The catch for me was: 1 Gleason 9 out of the 12. My huge difficulty was trying to choose between hormones to shrink the prostate + seeds + external beam with folks in Atlanta vs robo either in Nashville, Birmingham or FL. My local guy, a surgeon whose partners did robo, still sent me to Nashville to get a 2nd opinion on radiation vs surgery for me. The Nashville Doc felt, due to the encouraging DRE, that it was "most likely" contained, but because of my G9, it was a "no brainer" to have the surgery + lymph nodes out. And that if I went radiation, I would need hormone block also( turns out he was right about that) but that I would not know if the G9 had got out to the nodes for several years. In the end, a "need to know" steered me towards the surgery, combined with I felt a need to hurry due to the G9, though no one was rushing me. So I did have the surgery, but I was not sure of my decision right up to the time I went into the OR. Does that not sound insane? But, I also could not come to any peace about going with the radiation.

With all of my research plus the statistics given me by both the radiation guys and surgeons, it didn't seem to me that there was any statistical advantage either way. So why go with the surgical trauma and more severe possible complications? Again, that need to know, the possibility that IF it was contained being offered a so called cure, or knowing that if it was in the nodes then some other treatment needed right then. And the recommendation of a nationally known PCa expert, though he was also a surgeon. But, though I later decided to have him do the surgery, I was only there for his recommendation, original plan(which he knew of) to use some one else. That seemed a minimal reason to go surgical, maybe 51 surgery 49 radiation.

As it turned out, it was not fully contained, but had reached the edge of the seminal vesicle. Because he "cut wide" he feels there is a good chance he got it all and a good(or he might have said "fair", I will get more info at the 6 week visit) chance of a cure, with no other treatment recommended for now.

But if I had been a Gleason 6, I can not imagine that I would have chosen surgery. Then again, I only had one G9 out of 12 cores, so it could have been easily missed. But you mention increased risk of rectal or other cancers later with radiation. Did your research show you that radiation gave you a higher risk of getting non-prostate cancers 10+ years later? I was not aware of that. But then, the statistics I looked at were only comparing the odds of being PCa free X years out with surgery vs radiation, so I might have missed that, and maybe my decision would have been a little easier if I knew that was a factor. Good luck on your tough decision.
Bill

Re: newbie needs help!!

Bioguy,

Another consideration; I had ADT3 from DR Leibowitz last year and had a biopsy at the end of the treatment that showed no prostate cancer. His website is Compassionate Oncology. He also offered high dose testosterone replacement after the completion of the treatment. His feeling is that if any cancer cells survived they have adapted to a low androgen environment and will not do well in a high androgen environment. I have a T level of 1500 and feel really good. I guess I know why athletes use this stuff. Keep in mind that if you do not do well on this therapy you can still have surgery or radiation. You are very young to be loosing sexual and urinary function.

Fred

Re: newbie needs help!!

I chose radical surgery 6 years ago by a top urological surgeon when I was 58. The surgery lasted 45 minutes and I experienced basically no pain afterwards and absolutely no leakage. The operation was no big deal. I think because of the experience and quality of the urologist. About 4 members of my golf club have had a similar experience with the same doc. I do now however need viagara to function and things are not as good as before. The others have the same complaint. I think I might do the new improved brachy if I had it to do again - but 6 years ago surgery was the safest bet on a percentage basis to get rid of the cancer. Good luck in whatever route you decide to go.

Re: newbie needs help!!

Hi Bioguy-

I was three years younger than you (46) when I was diagnosed in a similiar way almost six years ago. Like you I did a lot of research and tried to weigh the advantages and disadvantages of each 'modality' (to this day I hate that word)of treatment.

Someone mentioned in a previous reply to take your time and to carefully weigh the options. I wholeheartly agree with that advice. Your choice of treatment is very personal so don't let ANYONE sway you one way or another until you are completely comfortable with your decision. I remember the immediate level of peace I felt when I finally decided on my course of treatment.

I'm sure you have checked out the survivor stories on this site. While I can't speak about your situation of having low testosterone, I can relate to your concerns about having PCa at a relatively young age. I had all the same concerns as you do. I opted for proton treatment (with Dr. Rossi when he was at LLUMC) and have absolutely no regrets. I won't bore you with the details of my story, but if you are interested it is posted in the survivors section under proton therapy under "M P".

I'd be happy to answer any questions. All the best.

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