Aggressive form of prostate cancer PS... - Advanced Prostate...

Advanced Prostate Cancer
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Aggressive form of prostate cancer PSA 11.8 and Gleason score 9.

Per1
Per1
24 Replies

I'm 71 years of age and was last week diagnosed with an aggressive form of prostate cancer. My PSA was 11.8 and my Gleason score was 9. My MRI scan came back negative but my bone scan show "something" on my pubic bone. I'm having a bone biopsy this coming Friday. My urologist indicated that if the cancer has spread into the bones the removal of my prostate would not extend my lifespan. I'm having a second opinion within the next two weeks. My urologist wants to put me on casodex and injections and later on radiation. I would appreciate any input/suggestions in terms of which path to take.

Thank you in advance,

The Great Dane

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Tall_Allen

It is controversial whether debulking is of any value, and if it is, would radiation or surgery work better:

pcnrv.blogspot.com/2016/08/...

There are some clinical trials that will help decide the question. I don't know if medicare will cover it - check with them first.

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Per1
Per1
in reply to Tall_Allen

Thank you so much for your reply.

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efsculpt

Dr. Mark Scholz mentioned in his book ("The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer) that Brachytherapy was a better option with advanced PC than removal. Basically, the radioactive "seeds" implanted in the prostate gland reach beyond the edge. Advanced PC the cancer often has "extracapsular extensions".

Craig

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Per1
Per1
in reply to efsculpt

Thanks a million.

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Canoehead

Get that second opinion - not from a urologist but from a medical oncologist who concentrates in PCa research. Best place for that is a “center of excellence,” usually a teaching hospital. You have lots of options: adt, adt and Zytiga, chemotherapy, radiation, surgery. With no or limited metastasis your outlook is very good, and cure is not out of the question. If you are otherwise healthy, look for the “kitchen sink” approach. It’s early in the fight, so never forget that no one will care more about whether you live or die than you do. So learn everything you can, ask questions, and become captain of your treatment team. God bless you, but don’t forget that God helps those who helps themselves.

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Johnkelsey

I’ve been in your boat since Dx May 2 this year, with at least one lymph node aglow vs your bone met...I agree with canoehead on this. After consulting two urologists and reading everything I could stand, I found myself at a national cancer center (Fox Chase in Philadelphia), currently on Lupron and Day 18 today of 26 days radiation, with a terrific care team that includes a radonc and a medonc, both PCa specialists. They are optimistic and have taken the time to explain exactly why, and consequently I am too. But in addition I chose to engage a highly regarded functional medicine MD for diet and supplement guidance, and a superb counselor who helps me through the inevitable heebie-jeebies. Next up, once radiation is over, a fitness specialist — I walk 2-3 miles a day, but need to get whole-body resistance exercise into my routine as well. And, how about that bucket list...

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Per1
Per1
in reply to Johnkelsey

Thank you for your feedback. Waiting to find out if my urologist will be doing a prostatectomy. I know that I will be starting casodex and will find out more following my bone biopsy on Friday.

Thanks again.

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Break60
Break60
in reply to Per1

I don’t know why he would recommend just casodex ; why not add Lupron and avodart?

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homer13
homer13
in reply to Johnkelsey

Who is your functional medicine doc?

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Johnkelsey
Johnkelsey
in reply to homer13

Dr Fred Pescatore, nyc, medicine369.com

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Johnkelsey

Dr Fred does not take Medicare so a first visit is expensive even at 50% old-guy discount, but he does submit the paperwork, which kicks back about 1/3. To me worth every penny - he identified and addressed issues everyone else had missed.

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Per1
Per1
in reply to Johnkelsey

John I'm in Oregon and will be going to OHSU.

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Schwah

If you do decide on a prostatectomy (and I agree seeds are better) use a guy at a center of excellence who’s done hundreds and hundreds. Not a local jack who does 12 a year . More importantly try and get Zytega early with your casodex. See the visual posted yesterday from the Syampede trial. Says it all about adding zytega early.

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Reply

I am in very similar situation with Gleason 9/10 and PSA quickly risen from 5.7 to 20 right before MRI guided biopsy. Lesions in pelvis found by PET bone scan. Age 63. Just finished 30 day shot of Firmagon, and PSA dropped to 2.8. Now started 90 day shot of Elligard and daily dose of Zytiga with no significant side effects so far. Enrolled in clinical trial at CINJ determining effectiveness of standard of care with\without robotic surgery. I am in the surgery group by randomization. They are still looking for participants for this new trial, which started a few months ago. Dr Jonathan Kim at CINJ. the leader of the study, has done well over 1000 such surgeries overall. I also found Dr Tewari at MT Sinai who has done many more than that. People come from all over the world to have their procedure by him. Wish you luck.

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kiboko

Don't panic! I was Gleason 9 and PSA 166 ten years ago and still enjoying living at 81 yoa.

Get the best advice you can, get a good oncologist and enjoy your life. Time is on your side.

This site is excellent for the very wide range of case histories and optimism. All of us here know we are going to die sometime, but so is everyone else! In the meantime do whatever makes the rest of your life worthwhile.

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tdouds

Let me jump in as another Gleason 9 person...just passed my 11 year survival mark; Diagnosed at 51; have had RP, radiation, and lots of ADT; been in a clinical trial for the past 4 years on continuous ADT (Eligard every 3 mos & Bicalutamide 50 mg daily) - PSA currently rising, but very slowly (at 0.19 presently)...definitely agree with everyone who is saying get a Medical Oncologist involved! It truly makes a difference! Nothing wrong with Urologists - mine was diagnosed by a urologist as well - but Med Oncs specializing in Prostate Cancer have a leg up on current treatment regimens, and they are focused on what we're all dealing with...and do as much research as you can stomach on your condition - in my opinion, knowledge is power, and the more you know about your disease, the more you can deal with it...there are many knowledgeable people here on this site, and you will find others as you get more involved - if there is an UsToo chapter in your locale (the National Support group for PCa) go to a meeting and talk with others face to face dealing with the same issues as you...also look to ZERO (another national support group), and do all the reading you can - everyone is here to help each of us deal with this disease that we are all actively battling in one form or another.

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Obie1J
Obie1J
in reply to tdouds

Hello! You have awesome news! Can you please tell me if you had any metastasis at the time of the diagnosis?

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tdouds
tdouds
in reply to Obie1J

At the time of my diagnosis, no. And in fact, they had said based on the MRI following my biopsy that nothing had escaped the capsule. That was in mid August 2007. On October 6, when my radical prostatectomy was done, it had escaped the capsule, was in the seminal vesicles, was going up the neck of the bladder, was in the surrounding muscle wall… It was all over the place basically, along with two lymph nodes out of 15 that they biopsied. Consequently I was told I had advanced prostate cancer 11 days after my surgery, when I was at the doctors office to have my catheter removed.

It took me a while to come to grips with all that, but by doing as much research and reading as I could, I began to understand more about the disease and how it was affecting me. I was doing intermittent ADT, at first for six months with an 18 month break before I had biochemical reoccurrence. I had noticed the rise happening on my quarterly visits, and I brought it up with my medical oncologist who agreed with me; he then hook me up with my radiation oncologist, and they spent six months prepping me for my radiation treatments. I was put on ADT for that six months prior to the radiation, and stayed on for the rest of the year. I then took a break that I thought would probably last about a year. Because I have type two diabetes, they tend to not keep me on ADT for longer than a year at a time, Just to try and keep weight gain in check. On my first two rounds of ADT I gained 30 pounds each time, which was not really very good for me. Since then, I’ve learned how to deal with therapy, and I don’t tend to gain now; in fact I have lost all on my hormone therapy.

Because I’ve responded so well each time I’ve been on ADT, they’ve been letting it go longer and longer, meaning I have a higher PSA each time, because they know that the meds will knock the PSA back down. He told me this third time, in 2014, that he probably let it get up to a 10 before putting me back on ADT. So, I arrive in June 2014, with a PSA of 10, and expecting to get a shot of Eligard... he comes in, looks at me and says “well, we’re gonna let it grow!“, And I am in shock! I was like, “why?“… He then told me that he wanted to get me into the clinical trial that I am in right now, And that you do that they have to see evidence of the actual cancer… So we’re gonna let it grow until we can see it on a bone scan. When I reported that here, I got more comments from many people saying “your doctor’s a quack!” and similar comments…However, he knew what he was doing! I was put on monthly monitoring at that point, so in July my PSA went to a 14; in August, it jumped to a 24, And he said “Time for a bone scan!… I had Mets to my left clavicle, bilateral ribs, mid right humerus, cavernosa (the back of the skull) and L4 in my spine… Pretty scary! No paying at this point, just horrible looking pictures. I was told to go straight to the pharmacy and pick up my Bicalutamide (generic Casodex). I did only the 50 mg per day dosage, without the Eligard shot for six weeks. My PSA dropped to .06 from 24 just on the Bicalutamide! I was placed in the standard of care arm of this clinical trial, so all I get is normal ADT treatment - no experimental medication. Fortunately for me, I respond great to this, although after four years of being on this protocol continuously, my PSA is now creeping up. It’s possible that I’m finally going castrate resistant as I am in my 12 year of dealing with the disease, But my doubling time right now is still above nine months, so I’m still pretty well under control. Besides, I’m only at a .19 PSA right now; there’s a long way to go from there.

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Obie1J
Obie1J
in reply to tdouds

Thank you for your detailed response! Your story gives big hopes for many men who’s cancer metastasized. Best of luck and many years of good life ( Obie’s wife)

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j-o-h-n

to: Per1: they all took the words right out of my mouth. Med Oncologist who specializes in Pca. Also take someone with you to take notes and ask questions. BTW where are you located?

Good Luck and Good Health.

j-o-h-n Thursday 07/26/2018 5:15 PM EDT

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Per1
Per1
in reply to j-o-h-n

I’m in Oregon and will get a second opinion from an Oncologist at OHSU in Portland. My wife is by my side at all appointments and she writes everything down.

Thank you for your feedback.

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auroracham

What stage are you?

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Per1
Per1
in reply to auroracham

Stage 4.

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Johnkelsey

Re wife at your side taking notes. My wife has joined me for each major appointment and she always starts the meeting by asking if she can record it on her phone (we are in Pennsylvania, where it’s illegal to record without explicit permission). So far the docs have always agreed. I’m a journalist by profession and my notes are pretty good, but we have both found her recordings invaluable in following weeks... answering such Q as why did he say about this, did we remember to ask about that, and how do we understand this other.

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