Recurrence

My treatment with tomotherapy over 5yrs ago was without problems. Worked every day, had treatments at 6:30 AM in office by 8, no one in office ever knew I was getting treatments. More reaction to the hormone therapy than the radiation, became a little more emotional. However over 5yrs later, last week I was told my PSA was 106 and appear to have bone mets on my spine, at least. Going in for a PET and CT Thursday. At the time of my original treatment had a PSA of 21 and a gleason of 7. Was "assured" they "got it all" with a PSA of under 1 for over a year. Not sure if it was the wrong treatment vs surgery, botched treatment of just the luck of the draw. Will see a Medical Oncologist next week to discuss the next step in my life's journey.  Anyone with similar or better experience with tomotherapy or recurrence at this level, I would appreciate comments.

Post Edited (pottspa) : 9/12/2012 1:57:49 PM (GMT-6)

I really hate to hear that. Is tomotherapy a form of IMRT or EBRT? My husband had 45 IMRT treatments with a Varian machine. He finished over 18 months ago, and has had no problems so far, and the treatment course was easy. We are cautiously optimistic, but time will tell.

I hope you get more comments specific to your treatment, but I just wanted to say that I am sorry.

Juliet

Not sure if it was the wrong treatment vs surgery, botched treatment of just the luck of the draw.

at this point it doesn't matter but i'm inclined to think "luck of the draw."  what was your previous PSA and how long before was it taken?

my radiation oncologist told me this week that the likelihood that i am cured of PC is in the high 90s%.  the way i see it it's an even 50/50.  the cancer will either return or it won't.

sorry to hear about your situation.  i'm hoping the best for you.

ed

 

I'm also inclined to go with "luck of the draw." My personal opinion is that PCa comes in many varieties that are not summarized by just staging, Gleason, or per-treatment PSA. Whatever original treatment you choose, some are more aggressive than others, and medical science just doesn't know enough yet to say in any reliable way which are more aggressive than others other than through crude and inexact measures such as staging, Gleason, etc.

The best we can do is to make the best informed choices we can. But I suspect that a cancer that is more aggressive is going to be less responsive to whatever treatment we, as patients, choose. And a cancer that is less aggressive will respond better on average regardless which treatment we choose.

I know it's not much consolation, but I think it's a crap shoot, and for the most part we and our doctors make the best choices we can based on what we know so far. Beyond that it's out of our control--and not worth second guessing.

Sorry to hear the bad news. Figuring out what to do about this disease is never easy. Even now, five years after your treatments, the fundamental tests to determine staging are pretty flawed. In your case it is possible that the biopsy underestimated your Gleason score -- which happens about 40% of the time. Nowadays, I think people considering non-invasive treatments are becoming more aware of this issue and are seeking a second opinion on their biopsy slides before going ahead. Of course, we all face unknowns like this, and luck of the draw affects us all.

Best of luck with your scans. There are some very promising treatments out there now and on the horizon that could be a big help.

Nellie

A warm welcome to you and sorry you had a reason to find us. Like said above, its probably luck of the draw. No sense in wasting time and energy on what is done. Your energy will best be spent going forward. Good luck on the scans-this is still very much treatable.

Never a mistake to be optimistic! Please keep us posted on your progress. There are other guys here with mets. Hopefully they will chime in with some encouragement!

Juliet

Begin Lupron therapy tomorrow.  Question.  I have been offered an opportunity to be participate in a clinical trail for IMC-A12 (cixutumumad), does anyone have experience with this trial and if so what opinions do you have.

Also an operational question about this site.  How do you find your post after it has been buried for lack of posts?  Took me five minutes it find it. 

 

Figured out how to find your blog, as usual just took some common sense and time.  Just click the "search" link on the banner that starts with "log off."

Were you getting regular psa tests after the treatment. So as not to scare other folks, its important you are upfront with this information. Im reading you had the treatment and 5 years later your psa was 106 with spine mets. This does not happen overnight. but if you were remiss in psa tests, that would explain the rise and mets. If they were regular, how does your urologist explain missing the major rise and just now reacting to it. Whats going on there potspa??