A complex profile – unfortunately

Thanks for asking about me Bluebird. I thought this deserved a separate thread, so I will just say hello here.

My profile – 10% of one core in 12 showing positive for pc, Gleason 4+4 (a second opinion from Johns Hopkins confirmed the score). I was just told last week it’s complex in that the only high reading is the Gleason score.

I originally scheduled Proton treatment – I ruled that out later because their ten year study showed unfavorable results with aggressive Gleason scores.

I decided on DaVinci Laparoscopic surgery – I chickened out (fortunately to be shown below) and opted for Radiation seeds.

Notice up to this point it is on my shoulders. As I said before, this site has actually been my only knowledgeable source without a vested interest.

Last week in talking with a Urologist, who I researched well, he said that he cannot recommend seeds purely because my Gleason is too high. He scheduled me with a radiologist in a different group than his to discuss external beam treatment, perhaps with seeds, perhaps with hormone shots. At last the first move I experienced by a uro that did not hint of self-interest.

Today the radiologist really hit me with the procedures that he recommends for me:
1. Hormone shot – This will last a year. It insets a time-release capsule under my skin (I think my arm). It shrinks the size of my prostate and also helps “Dry up” the cancer cells. The shot will be done by the Urologist who referred me to the radiologist.
2. Two months after the hormone shot, I will get external beam radiation. The reason he gave me for favoring this over surgery is that my Gleason score typically indicates there will be cancer beyond the prostate; the surgery will remove only the prostate and not address the external areas as does the radiation beam.
3. After the daily radiation for five weeks, both doctors will team up to implant the seeds.

This has not been easy to decide a treatment where I have confidence in both the physicians and the desired results. If any of you with a high Gleason are weighing what treatment is best, be sure to look at how it accounts for your Gleason score. If any of you have had high Gleason scores and found a better alternative than I describe, I would love to hear from you.

Walt,

It sounds like you and your doctor are discussing all the right things.  You're right, this is a complex and a personal decision.  With your symptoms, I would favor the multi-faceted approach as well.  I've read about cases where external radiation and seeds are combined, along with HT with good success.  Our thoughts and prayers are with you.  I wish you the very best in your treatment decisions.

Kind regards,

Barry (Idaho)

Susan,

It sounds like your husband has had a really rough experience. I wish you both the best, and hope things can start to take a more pleasant turn for you. Thanks very much for your post.

Barry,

Thanks for your thoughts. This has even gotten foggier for me. This afternoon I got a phone call from my cousin’s cousin – we hadn’t seen each other since we were youngsters. He is one of the top oncologists in Pittsburgh, although pc is not his specialty. After asking my scores he advised me to have surgical removal. When I really resisted accepting that he said I should do IMST. I now am making an appointment with the radiologist who he recommended. I consider myself fortunate that he phoned me when I mentioned the need to my cousin. Finally a knowledgeable voice with only my best interests at stake. Based on pure experience with Murphy’s Law, I am not cancelling any of the above until I can see an effective treatment scheduled.

Bluebird,

It is always great to read your posts, many thanks. I updated my signature as you suggested before writing this post. With a little luck it will even appear when I submit it. I wonder if the guy with the 25 IMRT and 90 seeds also had a hormone shot? That is the part that seems to have the worst side effects.

Walt,

This decision process can be so overwhelming. 
As each specialist is more energetic about their specialty,
only you can have all the information needed to make a decision.

Computerguy's thread has some very good discussion weighing the options.

Keep us "posted" and know that you have friends here that are fighting the same fight.

C^Cedar
ICTHUS!

Walt (and Myman)-

My situation was similar - PSA of 26.5 and Gleason 7 (4+3). After I got past the self-serving urologists, I had a consult with Alan Partin head of Urology at Johns Hopkins and creator of the Partin Tables (also a urologist - but he considered my well-being over his pocket). He suggested that, because of the good chance of capsular penetration, I go with radiation. I found a great radiologist here in Morristown, NJ and had 5 weeks of IMRT and then HDR brachy. Had been started on ADT from the very beginning, and my PSA dropped to undetectable very quickly and remains there today, after 2 years and 6 months. HOWEVER.......

And this is for all you guys who celebrate undetectable PSAs: obviously there was capsular penetration even before the radiation and I have metastases on my pelvis and all over both lungs. PSA is undetectable because the cells have mutated and don't look, or act, like PCa cells. As a result, I'm considered incurable.

Hopefully, your situation won't be as dire as mine. However, I do agree with your choice of HT, external beam and brachytherapy. Good luck.

-Gordy

After my surgery and surprising pathology report, the one thing I remember well that my surgeon said, is, "At least it's good that it's sitting in a jar of formaldeheide somewhere!"  That statement made a lot of sense to me.  The one way to find out how much cancer you have is to take it out.  Besides surgery for a broken wrist, this was the first time I had really had my body "invaded".  Was I nervous?  You bet!  I did my Kegal exercises prior to surgery, and after the cathedar was removed.  I dreaded the cath more than anything, but since it was put in when I was out of it, all it turned out to be was a nuisance.  Has my life changed since the surgery?  Another you bet!  However, I feel I/they know the degree of my cancer and am following the best thing I can do to give me the best chance at a long and happy life. 

Don't eliminate the surgery option.  I'm one who am glad that I chose it.  Otherwise, if my PSA would have been doing weird things, and I'm sure it would have following EBRT or seeds with my cancer, I would have been freaking out.  Keep all options open!

Good luck.