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It's Time For a Decision

Burgie
Posts: 14
Joined: Sep 2017

Hello my PC brothers.

I started on this site a few weeks back when I first had my diagnosis of PC.  This forum has been extremely helpful to me and also provided some much needed comic relief as so of you are great writers.  So here I am after meeting with doc's/teams from 2 highly regarded institustions I need to make a decision.  This site was extremely helpful when I began my jouney so as part of my process of gathering as much info as possible I am leaning on you again. 

 

Me:  47 years old, married with 3 kids at home (8-16).  Gleason 8/9 (all cores) with metastais into pelvic lymph nodes (possible lower abdomen as well) = Stage 4 locally advanced PC.....yaaaaayyyy.

 

Option #1 at cancer center X =

Clinical trail - 6 months of Lupron (ADT) + Abiraterone (Zitega) + 50% chance of Apalutamide (clinical trail rules) follwed by RP.  Based upon pathology report after surgery add rad therapy (RT) + chemo (Decotaxel).

Option #2 at cancer center Y =

Clinical trial - Lupron (ADT) for 2-3 years while also starting chemo (Decotaxel) for 6 months.  After chemo add 8 weeks of RT.  Surgery could be done here also based upon prostate MRI scheduled for next week.  Also after chemo start Abiraterone (Zitega) until Lupron ends.

 

I think I am in a good position either way but I would rather be in the best position for cure or at least long term survival.  Any feedback is appreciated.

 

Thanks

~Burgie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3294
Joined: May 2012

Since both options are trials, they by definition are somewhat unknowns.  It is interesting that both centers recommended trials, rather than existing protocols.

Both consist of mostly the same things, but in different orders of application.

I am NOT one of the "Stage 4" experts or guys here, but I do know from my other cancer and from watching friends with Stage 4 that Taxotere is rough stuff.  The fact that option "x" holds Taxotere until later in the process might be some argument for "x".

I have read that beginning Zytiga earlier than previously used a few years ago is showing dramatic promise. This is additional suggestion for "X". 

I hope that Will and VG and the others who have come back from Stage 4 will share their thoughts with you soon,

max

Burgie
Posts: 14
Joined: Sep 2017

Max,

Thank you for your comments.  I have been reading manyof these threads and you are an asset to us all.  I meet with a Rad Onc & surgeon on Tues after my porostate MRI.  My only reservation about "X" is that "Y" will start chemo first.  This is appealing to me as the cancer that may matastaize to my bones will be the killer so I feel this is a preemtive attack on this.  I will hopefully have clarity by this coming Wednesday to I can pick my path of attack and get this fight on. 

Thanks Again

~Burgie

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Burgie:

You are in a tough spot my friend, with the disease and treatment choices.  My situation was not similar so I have no valid input to your question.  However, I am a PCa survivor and I guess that alone may provide some encouragement to you.

If you can, ignore the emotional roller coaster ride you are on and focus on the decision making process with logic (and I believe you are as evidenced by this post).  Cancer is steady state physically, but not so mentally.  Your mind will whiplash from one scenario to another causing much aignst.  This I do know for I am now in the middle of a battle with rectal cancer.

My thoughts and prayers are with you and your family.  Hang tough my friend.

Jim

Will Doran
Posts: 207
Joined: Sep 2015

Burgie,

 I'm so sorry to hear of your situation.

I was diagnosed with "one tick" below Stage 4 in Oct 2013. I was listed as a pt3bN1 post surgery. I had a robotic assisted RP in Dec 2013.  I had no symptoms of PC before diagnosis. I started with a PSA of 69, and  Gleason of 3+4-7. It was found purely by accident.   Then I had two full years of Lupron Hormone Therapy and 40 Radiation treatments to the prostate cavity, as clean up. I was told by my doctor that if we hadn't done any treatment, I'd have about 2 years to live.   Post surgery tests showed I had 40% involvment of the prostate.  There was one lymph node involved with a very small spot.  That was so small that it  hadn't even shown up on my MRI scans, and was only found in the follow up pathology. The cancer has not spread to my bones.  At this time, I am 4+years post diagnosis, and my PSA is still holding at <0.5. I was at <0.010, but as my testosterone has come back to normal, the PSA has come up a bit.  However, two weeks ago, the rate of rise in PSA has slowed to half of what it was.  My doctor was hoping this is what would happen, and so far it has worked out as he wanted.  There are other options, but if you are like me, you will want the cancer removed, I assume.  My doctor is now talking of plans for 2022, and even as far on as 2030.  

I'm not cured.  We never are.  I can't and won't tell you what to do, but just what I have had happen with my treatments.  Make sure and study very hard in making you decisions. My doctor was and is involved with doing clinical trials.  I missed getting in on the one he was doing at the time I was diagnosed.  It was with Hormone Therapy. I think it was for post surgery folks who werent' having the PSA drop as they wanted.  He has mentioned the name to us and has suggested that we might try that if needed.  The name has slipped my mind.  He is still in the same vain of thought as my Radiation & Chemo Doctors, that we made the right decision to go with surgery and HT and Radiation.  My cancer was very aggresive and fast moving.  So, far I'm holding my own.  My doctors don't want to go back on hormone therapy unless we absolutely have to.  We don't want the cancer to build up a resistance to HT.  So, as long as my PSA stays under 3 or 4, we are watching the rate of rise.  

We are not doctors, but can only share or situations with others.  Vascodegama (VG) is very studied on this stuff.  I hope he will add his knowledge for you to read.

Like I always say, Study hard before you make your decisions.

Best of Luck

Love, Peace and God Bless

Will

 

Burgie
Posts: 14
Joined: Sep 2017

Will, Jim & Max,

Thank you very much.  I had a prostate MRI today to give the "potential" surgeons a better idea what is going on.  I meet with the Red Onc and surgeons tomorrow.  By Wedneaday I need to decide as my new pet is aggressive as well.  I'll keep posting and hopefully be able to share going forward.

PS - I found a PC support group and attending a meeting tonight where one of the topics is advances in treatment so I am hopful this shed's some light.

 

Thanks all and good luck to everyones battles.

~Burgie

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