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Conference yesterday with oncologists

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Posted 1/8/2010 4:27 PM (GMT 0)
Well yesterday MJ & I finally attended what they call a Multimodality conference at the Lynn Cancer Inst.  I met with a medical oncologist, radiation oncolgist, Nutrition Services and a Cancer Care Coordination for support groups etc.  I found the medical oncologist very informative he explained that my chances for recovery were probably around 30 to 40 % not great, but he felt I was strong enough to go through the radiation and really it is the only treatment that can possibilty offer a cure.  He did not feel hormone treatment at this time would be of any beneift and could cause more risks and should be saved for treatment if radiation does not work.  He also felt that if the PSA continued to rise after the radiation that he would watch and do bone scans and would not treat with hormones until I had symptoms, he said they have found that treating before symptoms offers no long term benefit.  He said he has patients that have a PSA of over 200 and have no symptoms and are still not showing anything on bone scans.  He said ever individual is different and reacts different.  He said my doubling time was fast but that the numbers are still so low that the cells are microscoptic and that my PSA before the operation was only 4.0 and my tumor was small that it was all in my favor.  The next radiation oncologist also agreeded on not hormones until something is found.  This morning these doctors and others meet to discuss my case and others and will call this afternoon to let me know what treatment they recommend.  The procotol will be IGMT on the Novalis TX Linear Accelerator which they said is new and state of the art machine.  I will get more information today if they decide on radiation and will probably be scheduled.  Will write again when I get the results.
Posted 1/8/2010 4:41 PM (GMT 0)
Thanks for the update Jerry. In looking at your numbers I am wondering why only a 30-40 percent chance. I guess the Partin tables would apply but it doesnt look like your pathology report indicated that the cancer had spread. Keep us posted and stay positive.

Michael

Posted 1/8/2010 4:48 PM (GMT 0)
Yes, thanks for the update. We'll be waiting to hear what they decide and where you decide to go with this. Hang in there...
Posted 1/8/2010 4:48 PM (GMT 0)
 

Michael,

The reason they said 30 to 40% chance was because my Path was so good the chances for local recurrance are less.  Good report bad news can't win.

Jerry1

Posted 1/8/2010 5:43 PM (GMT 0)
Hi Jerry,

Thank you for posting your meeting summary. My urologist and radiation oncologist gave similar reasons for not including hormone therapy as well as not having a psa number to track radiation success while on hormone therapy. These two gents gave me a 60% chance of success but I come to realize this is a best guess (but I like this guess better than a lower one).

Our best to you and others, we'll win this one!

Jake
Posted 1/8/2010 8:48 PM (GMT 0)
Jerry, sounds like you got pretty well the same advice I did when I met with the radiation oncologists. I went through the IMRT with the Novalis hardware, it was pretty high tech. My dr. agreed the same way you were told about Hormone Treatments, not using them at this time. The radiation is the last shot for a curative step, and we both know the % are fairly low, but I went for it, and you may want to do the same. Hope it goes well, and you come up with a new game plan shortly. I'll be rooting for you no matter what happens.

David in SC
Posted 1/8/2010 9:41 PM (GMT 0)
Jerry,
Thanks for the update and info. All us high risk of relapse guys find this feedback very informative and enlightening. keep us posted on how you go and the best of luck with the treatment.
Bill
Posted 1/8/2010 10:08 PM (GMT 0)
Jerry,

Thanks for the update, be sure to keep us posted. Sounds like you have a good team assembled. Your report speaks to their sincere concern for treating the entire patient and not just the cancer cells.

Best to you,

Sonny
Posted 1/9/2010 12:18 AM (GMT 0)
 

Thank you all for your comments and support.  Heard from the radiation oncologist and my urologist tonight they said all agreed on doing radiation without hormones in the hope that the cancer cells are sitting in the prostate bed.  They feel it is a good shot at a cure but if not then we know what we are dealing with and go to the next step.  I begin treatment on Jan 18th at 4:15PM.  MJ is very scared and I thank god everyday that I have her we are only married 8 years and I know she will be by my side no matter what and is truly the love of my life.  I am a very lucky man in that regard no matter what this cancer brings we can handle it together.

Jerry1  

Posted 1/9/2010 12:24 AM (GMT 0)
Jerry, sounds like you got your plan in place. Do you know how many treatments and how much radiation they are planning on using with you? I agree, our other halves can make the difference in how we deal with the horrors of cancer and its treatments and side effects. I couldn't imagine going through all this alone, as some have to do. Good luck ahead.

David in SC
Posted 1/9/2010 1:03 AM (GMT 0)
 

David,

Yes it will be a total of 35 treatments over 7 weeks.  Not sure on how much radiation I guess I will find that out on the 18th but good question to ask thanks for the reminder.

Jerry1

Posted 1/9/2010 6:16 PM (GMT 0)

JERRY, ET AL..

I posted some months back about 'creeping' PSA score at .2 then .25 and .3 and then .25. 

(Cancer at 52 - age presently 65 - Gleason 6 not through the capsule and with a 4.8 PSA at the time of Prostatectomy)

Wein at HUP called for a bone scan, an MRI, and a needle biopsy. Then consults with a radiation oncologist.

I took the MRI the bone scan and the needle biopsy. All showed negative results. I then had an October,2009 PSA of .25 on a 'super sensitive' test so I went to Wein at HUP (Urologist who removed my prostate in '97) and Vapiwala (Radiation Oncologist - HUP)  and we decided I could wait till .4 PSA before thinking treatment. (.4 seemed the Deciding number)

I then went for a second opinion to Gamella at Jefferson and he too thought watchful waiting was the proper decision.  

They all thought that almost 13 years without a rise was good!

This surprised me since I assumed once I had the prostate removed that would be the finish of cancer. (March, 1997)

Reoccurrance seems to be a not unlikely circumstance!

Also - in speaking with another radiologist... treatment does not cure. IT SUPPRESSES the PSA which may never go back up but radiation is not a cure.

Hormone treatment does not seem to be a good alternative in any circumstance. I have friend who did this as his main treatment. It really altered his libido - something which I did not want to sacrifice at this point for me.  But that is an option in a bad case scenario in which after radiation the PSA continues to rise.

And there are other options at that time.

Posted 1/9/2010 9:51 PM (GMT 0)
Jerry,

My guess would be you'll be receiving 70Gys. My treatment plan was for 35 also and I am getting 2 per day. Seems like a fairly standard process.

Here's hoping that your 35 go as easily and as fast as mine have. Just 5 to go for me.

Best of luck and blessings to you and your family,

Sonny
Posted 1/9/2010 9:56 PM (GMT 0)
Just to add perspective, the odds that they are giving you are for non-recurrence of PC. This is very different from your chances of not dying from PC which are much better. One might say that no man can avoid dying of PC except by dying of something else first.
Posted 1/9/2010 10:43 PM (GMT 0)
geezer, i agree with your last statement.

jerry, i bet sonny is correct with your 35 treatments, as they try to keep the daily gys level to 2 or less. Most people wouldnt tolerate over 2 gys per day. Just hope you won't be a sensitive type like me.
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