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Positive Biopsy 5 days ago

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Posted 10/7/2010 4:28 PM (GMT 0)
Hi all...
I have been lurking around trying to learn more while awaiting the results of my biopsy (which was positive). Now faced with making a treatment decision. Irritated to find that the nice low PSAs I have been so religious about, turned out to be completely worthless. I am planning on taking my time coming to a treatment decision. First issue is a second opinion that will probably be JH in Baltimore or Mayo here in J'ville. Either way I expect to ahnging out here and learning! Good luck to all!
Posted 10/7/2010 4:50 PM (GMT 0)
Sorry you have the positive biopsy.

You have come to the right place if you want opinions on treatment options.

Just curious, how do they know at this point the extracapsular tissue and lymphovascular system is free of cancer. I thought they had to take actual samples (during prostatectomy) to be (relatively) certain of this.

Best of luck with your treatment and cure.

Dan
Posted 10/7/2010 4:54 PM (GMT 0)
Welcome to the place nobody wants to be..

Your case is pretty typical, and I bet your treatment will be too...If you are in excellent health and physical condition, they MIGHT recommend surgery, but at 73, more than likely, it will be seeds and maybe a dose of IMRT around the edges just to make sure..

If you have not yet read "A Guide to surviving Prostate cancer" by Dr. Walsh that will give you a good PC background..

Take your time, learn all you can, then get 'er done! Best of luck to you!
Posted 10/7/2010 5:57 PM (GMT 0)
Hi April6th... Good question. All I know is that it came from the pathologist. Possibly from interpretation of sonogram along with samples? I'll ask my Uro when I see him next

Fairwind - I'm off to he bookstore this pm, thanks!
Posted 10/7/2010 6:03 PM (GMT 0)
welcome gator,

now is the time to take a deep breath, and get into the matter of things. that book will be a good starting point and primer.

be sure to bring all your other questions here, we cover the full spectrum of treatment choices, side effects, etc, no such thing as
a dumb question among us.

hate you need to be here, but good place to be.

you are a gleason 7, intermediate agressive, so keep that in mind as you are studying your options.. gleason 7s are hard to predict, they can act tame like a gleason 6, or agressive like a gleason 8, depends on that mix of the "4" cells.

good luck, as you begin your journey, the brotherhood is real here, and we are here to help you

david in sc
Posted 10/7/2010 11:31 PM (GMT 0)
Gator,

I had my open prostatectomy @ Mayo in JAX. I'm very satisfied with the results.
Posted 12/16/2010 4:16 AM (GMT 0)
Have now completed detailed consultations with DaVinci folks (at Mayo) and Radiation folks (at FROG). Interesting in that Mayo DaVinci folks recommend IGRT but NOT Proton therapy. FROG folks recommend a combination of seeds and IGRT but NOT Proton. In tracing back through some of the claims made by both, I can find misleading omissions and straight out errors. The whole thing seems to be driven by marketing and it is leaving me very frustrated to say the least. I had set the middle of January7 for my decision and have only the Proton folks left to visit. I would really like to talk to someone about Protons who had either experience or a solid academic base. Any Help????
Posted 12/16/2010 7:54 AM (GMT 0)
Welcome Gator9999,
All in all, as far as biopsies go that report is not too bad. You have two circulatory systems in your body ...... the vascular system which carries blood to all your organs and tissue and your lymphatic system which carries lymphatic fluid ..... this is a drainage system that loosely collects all the cell debris waste products of your body. The lymphatic system comes together at nodes throughout your body. When they take the prostate plugs there are minute blood vessels and lymph vessels within the prostate. If there is no sign of tumour in these vessels within the prostate then the report will say negative for lymphatic or vascular involvement. Mind you we are talking about very small samples of tissue. My biopsy report said negative for lympho/vascular involvement......my post surgical report (once they examined the entire gland) said vascular involvement was extensive.
This is a separate issue to node involvement which is often mentioned here although tumour cells can escape the prostate via the lymphatic vessels and lodge within and invade the lymph nodes. Tumour can and is spread by the lymph system as well as the vascular system.
Bill
Posted 12/16/2010 2:17 PM (GMT 0)
I have a soda straw view of proton, just two family members who had it. They had almost no side effects. one is now about 15 years out having been treated at loma linda, the other was at md anderson houston two years ago. I stronly considered it but having to live in houston for 2.5 months turned me away. I choice RRP, that decision has haunted me as I was left totally incontinent as impotent as well. This is just anecdotal but still i wonder. Certainly my outcome would have been different. about those recomendations, they are worth squat in my opinion. THese guys sell you what they have. If I were you I would ignore them completly and make your own decisions. I don't know how much traction the proton will ultimately acheive due to the enormous expense in the facility and it almost surely is a losing business proposition to those who build their proton facilities. It seems to me, listenting to all the pro and con noise about proton vs the other treatments, that proton is operationing in some other orbit from all the PCa comunity. Nobody likes it except the patients who had it.
Posted 12/16/2010 5:05 PM (GMT 0)
Gator, I had RRP (went very smoothly with no complications) at Mayo Jax and SRT and now HT.  Pathology report was very good except Gleason 9 which is why I am now where I am. At your age, I would seriously look at the Proton Institute at Shands in Jacksonville.  I never discussed that option with my Uro at Mayo but I read that Mayo is going to have proton therapy available at Rochester and Phoenix, not Jacksonville because of Shands.  That tells me that for whatever reason, Mayo thinks proton therapy is definitely part of their future plans.

Go Noles!!!   The Old Sailor 

Posted 12/16/2010 5:20 PM (GMT 0)
Gator,

I was treated in Jax by FROG. I also know someone in St. Augustine who did proton. Please feel free to contact me at the email address in my profile (click on my username Joe67) for more specifics. Hope I can be of some help.

Joe

Posted 12/16/2010 5:47 PM (GMT 0)
Gator,
Anoctcotally you can find a lot of positive things about proton. Scientifically there have been no clear advantages of proton over conventional IMRT. Proton delivers about 65 greys of radiation wheras IMRT delivers up to 81 gy and a combination seeds/IMRT a whopping 150 gy. Higher doses equate to better cure rates, so when looking at radiation you want the highest dose with the most accurracy. To anyone older than 70, surgery carries a greater risk of complications and side affects.
With a low grade G7, proton may work just fine, but will not give any major advantages over the newer IMRT machines.
JohnT
Posted 4/21/2011 12:41 AM (GMT 0)
Well I decided on Protons (Jacksonville Proton Institute). I felt the radiation folks were way too pushy and overly critical of everything except radiation and seeds and the side effects scared hell out of me. The DaVinci doc at Mayo would have been my second choice. In this whole process, the only negative on Protons was the fact that there was no 10-year clinical data. Logic told me that for the first 9 years there was none on Radical, DaVinci or Radiation either. That does not mean it should be ruled out. I have completed 32 of my scheduled 39 sessions as of today. No side effects at all. A little tired but I think that has more to the disruption of your life than the actual therapy. My only complaint is the unpredictable scheduling that you have to put up with. One day at 3pm next at 9pm etc. I realize that the real test is still to come but I have talked with a lot of graduates and have yet to find one who regretted his decision. Let me known if there are any questions and I'll try to report on my post-therapy progress. GLTA
Posted 8/13/2011 6:38 PM (GMT 0)
A little over 4 months post Ptoton therapy! My psa is .7 and I feel great. No side effects at all. Sleep through most nights and no dribbling! No ED!

I don't want to sound like a cheerleader and I know things can change quickly but, I am Totally convinced that Protons was the right choice for me.

I probably spent too long studying the alternatives - but I am very happy with where I am now... GLTA
Posted 8/13/2011 6:38 PM (GMT 0)
A little over 4 months post Ptoton therapy! My psa is .7 and I feel great. No side effects at all. Sleep through most nights and no dribbling! No ED!

I don't want to sound like a cheerleader and I know things can change quickly but, I am Totally convinced that Protons was the right choice for me.

I probably spent too long studying the alternatives - but I am very happy with where I am now... GLTA
Posted 8/13/2011 7:27 PM (GMT 0)
Hi Gator,

I wanted to go the proton route and my URO thought I was a good candidate. However my insurance BCBS of AL still considers it experimental even though Medicare and BCBS in some other states will cover the cost. My wife and I didnt want to cash in a major part of our retirement to pay for Proton out of pocket.  The rest is history, RALP on June 8th and I have no complaints. So glad to hear it so far worked for you.

Posted 8/14/2011 1:03 AM (GMT 0)
Gator, I'm elated that the Proton therapy is working so well.  You obviously made the right choice.  Take care and keep the forum posted on your progress.   Old Sailor and a Nole fan!

Posted 8/14/2011 3:04 AM (GMT 0)
Gator,
The two largest comparisons of radiation therapies are the ACER 2009 study and the Prostate CAncer Study Group. You can google these two studies. Basically Proton came in at the low end of all radiation treatments and had the highest cost. It is probably very effective for low grade cancer (just about every treatment is), but with the intermediate and high grades they are giving IMRT boosts to the Proton treatments, which should tell you something about the doses Proton is able to deliver.
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