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Old 03-14-2012, 11:31 PM   #1
Join Date: Mar 2012
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rsire4444 HB User
Recently diagnosed with best to digest all the available treatment info

I was recently diagnosed with PC. PSA of 2.7, prostate size smaller of 27cm,
age 55, GL or 3+4 (7), 7 out of 12 biopsies samples positive for cancer. One
a trace, one 100%, the remaining in the 20%-30% range. Bone, MRI, and CT
scan all negative. Surgery and combo radiation (IMRT & brachytherapy, and
possibly even a hormone pre-treatment) have been suggested as a
highly effective way of treatment. Things I read range from highly positive for
either treatment with each having equivalent efficacy (low 90%), to surgery
being the best (low 90%) and radiation being less effective (75% - 80%) or
only placing the cancer in check and not really eradicating it.
On top of that the radiation oncology treatment specialist I've been referred
to has their own data indicating efficacy of low to mid 90%.
How does on separate the wheat from the chaff?
Sounds like radiation is a several month treatment while surgery is more
immediate with a several month recovery to normalcy.
Appreciate any guidance or advice on weighing the options....

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Old 03-15-2012, 01:13 PM   #2
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Re: Recently diagnosed with best to digest all the available treatment info

Sorry to hear about your diagnosis. It's a good idea to get a second opinion on your biopsy specimens from a specialty lab like Bostwick or Epstein. Assuming they confirm the diagnosis, as you probably know, you are in the intermediate risk category. I sympathize with your inability to find consistent information either on the internet or from doctors. Each kind of doctor touts his own specialty and believes it is the best (or why else would he be offering it?) It becomes incumbent upon you to meet with a range of good doctors in different specialties and make your own decision. For intermediate risk disease, both radiation and surgery offer odds in the 90s for a lasting cure. Your doctor may have run a "nomogram" based on your pathology report. This tells you the odds that the cancer has escaped the prostate capsule. If the odds are high, you may not want surgery, because you will need radiation anyway. Also, if the odds are high, external beam radiation (IMRT or Cyberknife) for the area outside your prostate, with a boost to the prostate itself (using brachy, proton or CyberKnife) may be prudent.

The reason some urologists don't believe that radiation is as good as surgery, is because it didn't used to be. About ten years ago they finally figured out that higher doses were necessary for a cure and a new generation of machinery and technology emerged that was capable of delivering those doses without bad side effects. All of the following are excellent as practiced by the best radiation oncologists: CyberKnife, HDR Brachytherapy (temporary implants), LDR Brachytherapy (seeds), pencil-beam protons, and IGRT/IMRT.

Surgery is also a good option as practiced by the best surgeons. Robotic, Laparoscopic or Open are all equally good as practiced by surgeons who are very experienced. They should have done at least 1000 of that kind of surgery.

I haven't seen any advantage in including hormone therapy for Gleason 3+4.

I stress the experience of the doctor in all therapies. LDR Brachytherapy (seeds) has cure rates in the very high 90s as practiced at UWSeattle or Memorial Sloan Kettering, but much lower in some other places. Side effects from surgery vary widely according to the expertise of the surgeon and other factors beyond his control.

One critical factor is your need to have a thoroughly biopsied prostate gland outside of your body and know if the margins are clear. If this is a "must" for you, then surgery is probably your best choice.

Given that all those treatments I listed, as practiced by expert practitioners, have about equal chance of a lasting cure, my attention turned to the side effect profile of each treatment. Since ED and incontinence were things I wanted to avoid at all costs, I chose radiation. I eliminated IGRT/IMRT and pencil-beam proton because all the other options involved less treatment time, and I eliminated the brachytherapies only because I preferred not to have an invasive procedure if I could avoid it (this was a minor consideration). It also influenced my decision that the radiation oncologist who pioneered CyberKnife for prostate cancer had recently moved close by and had published his five year results (which were excellent). Five 5 minute treatments and I was done.

As you research these alternatives, please let me know if you have any questions.

- Allen

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Old 03-15-2012, 08:49 PM   #3
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rsire4444 HB User
Re: Recently diagnosed with best to digest all the available treatment info

Thanks for the information. I have not looked into CyberKnife, but sounds
like I ought to. I forgot to include that I am at a T1c stage.. still places
me in the intermediate risk area. I am in the Denver area.
How does one find the best practitioners of the various treatments in my
area, and in the States? What would be the factors in determining to go
out of the local area to get treatment?

What was your PC levels and age when deciding treatment (if you don't
mind me asking)?

thanks for the information.. its good to converse with others who have
gone through the same challenges that I am currently experiencing.
Right now I feel fairly good about a successful treatment for the two
treatments types I've examined. Both treatment type practitioners I have
spoke with have a high level of confidence in their ability to eradicate
my PC.

thanks again,


Old 03-16-2012, 12:27 AM   #4
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Re: Recently diagnosed with best to digest all the available treatment info

Hi Rod,
I was low risk - 58 y.o., PSA 7.3, Gleason 3+3 - 8/17 cores positive - about 5% cancer overall. All the treatments I mentioned are good for intermediate risk as well. I never met a doctor who didn't project confidence -- get their statistics - they ought to be happy to share them if they're good. If they have an excuse for sharing -- run out of there -- fast!

Here's a quick list of things to ask about off the top of my head:

For surgeons, you should get the # of that kind of operation (whether laparoscopic or robotic) that they've done. Also, get their positive margin rate -- it should be below 15%, hopefully below 10%. Your biopsy report probably has on it if there's evidence of perineural invasion -- if there is "nerve sparing" may not be an option. Also ask about their procedure for re-attaching the urethra. What is their "trifecta" rate? Get their stats on erectile function preservation and continence. Make sure they discuss the risk of other common side effects, including penile shortening, climacturia (look it up), and stress incontinence. Ask to start ED meds early.

For brachy specialists, the implants should be image-guided with fiducials, and the plan should be computer-generated. Find out how many they've done -- hopefully more than a hundred (the learning curve for radiation is no where near as steep as for surgery). Ask how the dose to the urethra will be minimized. For seeds, they should be stranded. For temporary implants, understand the insertion schedule (protocols vary). Get their 5-year freedom from biochemical failure rate -- should be in the high 90s.

For the various kinds of external radiation, ask for number treated for prostate and freedom from biochemical failure rate. Make sure it is image guided (fiducials or transponders) to account for something called intrafractional motion. Because you are Gleason 7, they will have to irradiate a wider margin around the prostate than they did for me. Ask what it will be on the rectal side (should be shorter) and on the other side (should go deeper). Ask about the expected dose to the rectum and bladder.

I think it's good to ask questions like these, even when you don't fully understand the answers. It gives you a basis for comparison, and lets the doctor know that you are concerned about such things. My advice is to go in with a written list of questions, write down the answers and, and bring someone with you to catch what you miss. Also bring with you your PSA history and your full pathology report. My experience doing this has been very positive from the many doctors I've interviewed. I've become the unofficial guy to bring along at my PC support group (BTW, join one if there's one in your area.) Doctors also appreciate it when it is your decision, not theirs. They prefer the role of advisor, but too often they are asked to make the decision. By the way, prepare to hear the phrase "This is what I would do if it were me/my father/my brother," I wish I had a dollar for every time I heard that!

I know there are CyberKnife facilities in the Denver area. I know there are good doctors everywhere, many of them unaffiliated with large centers, but if you're interested in those, many of the famous centers of excellence are NCCN members. They set high standards for themselves and follow well-researched protocols, so it may be a good place to begin a search. Some centers are known for specific things, like Johns Hopkins for surgery, UWSeattle for LDR Brachytherapy, UFJacksonville for pencil-beam proton (fairly new, but some good results so far), UCLA and William Beaumont for HDR Brachytherapy monotherapy, and Memorial Sloan Kettering for just about anything.

- Allen

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Old 03-17-2012, 08:00 PM   #5
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Re: Recently diagnosed with best to digest all the available treatment info

I'm not a doctor, and Tall Allen has a wealth of information, but from my perspective having just gone through a similar situation, surgery was the only real choice for me. I had a Gleason 8 (4+4) and my CT, bone scan came back negative for spread. I had 2 out of 14 cores possitive. I too was a TC1. I was told surgery and radiation were equally effective in removing my cancer, but radiation would most likely create new cancers in a decade. No thank you. Also, if I went with surgery and the cancer eventually came back I would still have radiation (salvage) in my arsenal. The big question for me was the side effects of each treatment. Incontinence didn't sound horribly horrible, and from the books I read it was something that could be remedied over time. The erectile preservation was a concern for sure, but hell, I didn't even consider radiation for a second over surgery just because of that since I was told radiation could also impair ability to have erection.

You have a Gleason 7 so maybe the other treatment options mentioned over and above surgery and radiation are viable options for you, but the only advice I can give you is find the best surgeon you can, go for Open surgery and get the prostate removed asap. You'll drive yourself nuts reading about all the options and hocus pocus treatments out there. Surgery is simple (well, you know what I mean). Surgery is definitive. If you get it out quickly and there's no spread then you may never need any additional treatment ever. Sure, you may have some incontinence issues and you may lose ability to have an erection, but for me, that's a small price to pay to rid yourself of this disease.

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Old 03-18-2012, 07:16 AM   #6
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Re: Recently diagnosed with best to digest all the available treatment info

Hi Rod
I was diagnosed with Gleason 8 (4+4) on Nov 29. Two out of 14 cores positive. My cancer was also a TC1. My bone scan and CT was negative for spread.

I too was confused like you are with the various treatment options. After disussing with my urologist and oncologist they both agreed that surgery was my best possible option to eradicate the disease, without debate (for my set of particular circumstances).

I read the many posts on the Board and did some research on all the other treatment options and even though I needed to educate myself, I felt so much stress trying to get a handle on what was out there. At the end of the day there was two options for me - either surgery or radiation. It sounds like you are in a similar boat as I was.

Incontinence and loss or erectile function was of little importance to me. From what I read the incontinence can be dealt with and you can return to a normal life in that regard. I'm just 8 weeks out from surgery and I'm changing just 1 pad a day. No big deal, and the upside is that I'm doing less laundry . I have lost erectile function, but yeesh, I couldn't care less about that right now. Mr. Peter and I had quite a run over 53 years, so if it never gets hard again I can live with that. I just want to live and I don't want radiation side effects if I can avoid them and so far, for my particular situation, surgery was the right choice. My cancer was removed, my hospital stay was just 3 days, the catheter was the worst part, the spasms confinded me to my bed at home for 20 hours a day, but that in hindsight was good as it forced me to rest. My pathology came back negative for spread (no positive margins), and my first PSA test was undetectable. My doctor says I'm one of the lucky ones in that I caught it very early, I didn't take too much time to make a decision, and surgery provided us with the opportunity to study the gland to know exactly what was going on. I'm happy with my decision. Yeah, it's a bummer about the erectile side of things, but I'm still hopefully that it will come back, but I'm not even thinking about that at this point to be truthful.

I'm not in a position to give medical advice other than my personal situation, but after reading your symptoms I would think surgery should be at the top of your list for treatment option. I would also go with Open surgery if the plan is to also remove lymph node and seminal vessicles (which they did for me)

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