prostate cancer treatment choices

Posted by Ronoir @ronoir, Jul 29, 2016

Hello everyone, new member looking for some experiences/advise on post radical prostatectomy treatment. my stats: Gleason 9, lymph nodes, seminal vesicle, margins, fat tissue cap all positive for cancer. 5 of 41 lymph nodes removed were positive also seminal vesicle was removed. p.s.a. 3 mos. post op .08, .10 .12 @.15 presently. Prostatectomy was part of protocol for immunotherapy vaccine clinical trial. Would appreciate any input you may have on radiation and/or hormone therapies. Thanks

Anybody having anything good to say about the options

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@krv123

Anybody having anything good to say about the options

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Hi @krv123, welcome to Connect.
I moved your message to an existing discussion about prostate cancer treatment options. Click VIEW & REPLY in the email notice to read through the discussion and meet members and the choices they made. You may also be interested in reviewing and joining in these discussions
– Prostate cancer treated with Leuprolide https://connect.mayoclinic.org/discussion/prostate-ancer-treated-with-leuprolide/
– Why did you choose brachytherapy for prostate cancer https://connect.mayoclinic.org/discussion/why-did-you-choose-brachytherapy-for-prostate-cancer/
– Video Q&A about Prostate Cancer https://connect.mayoclinic.org/webinar/video-qa-about-prostate-cancer/
– Prostate cancer treatment: stereotactic body radiation therapy https://connect.mayoclinic.org/discussion/prostate-cancer-treatment/

Krv123, what treatment options are you considering?

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@kanaazpereira

Hello @markbenson, and welcome to Connect. I’m sorry to hear about your diagnosis. I encourage you to watch the live Video Q&A with Dr. Mitchell Humphreys about prostate cancer, which will take place tomorrow, Monday Sept. 25th at 5pm. You can participate in the Video Q&A right here on Connect; feel free to post your question before or during the presentation. You can view details and sign-up here:
https://connect.mayoclinic.org/webinar/video-qa-about-prostate-cancer/.
I’d also like to introduce you to some members talking about prostate cancer on Connect. Please meet @donnelson @flor @BuckyFestoon @giddyup1 @morris @rinron @BuckyFestoon @ronoir.
And, you may wish to read this past discussion, https://connect.mayoclinic.org/discussion/prostate-cancer/, where members have also shared their experiences with prostate cancer and removal of prostate.

@markbenson, may I ask if you would share why you chose to have your prostate removed rather than undergo radiation therapy?

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Hi @markbenson
It’s been a while since we heard from you. How are you?

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Looking for anyone who has or has information regarding small cell prostate cancer as I do. Thanks

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Hello @dlc2cg5. Welcome to the group. You will notice that I moved your search on prostate cancer to a group discussion already taking place. I think you will find helpful information within this thread. Please feel free to ask questions to members by using the reply button. Directly above your post is a post from our community director, Colleen. You may be interested in viewing the Video Q&A.

How long has it been since you were diagnosed?

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@jamienolson

Hello @dlc2cg5. Welcome to the group. You will notice that I moved your search on prostate cancer to a group discussion already taking place. I think you will find helpful information within this thread. Please feel free to ask questions to members by using the reply button. Directly above your post is a post from our community director, Colleen. You may be interested in viewing the Video Q&A.

How long has it been since you were diagnosed?

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I got the good news about 6 weeks ago and two go rounds of chemo now.

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So, your choices are many and bewildering…

I was diagnosed in Jan 14, surgery in March, pathology report T2CNoMx, GS8, margins negative, no ECE…18 months later, BCR when PSA showed up at .2 then .3.

Did SRT, 39 treatments, 70.2 GyA…90 days after that radiologist looked at me and said PSA was .7, SRT had failed! Clearly my PCa has progressed to the pelvic lymph nodes.

I vowed to find it before making my next treatment decision! Meanwhile, PSA took off, doubling time and velocity were less than three months! Went to Mayo in Jan 17 for C11 Choline scan and consult with Dr. Kwon. We found it, four lymph nodes! Armed with that and my clinical indicators- PSADT, PSAV, GS8, BCR only 18 months after surgery I decided to be aggressive and elected to combine therapies – six cycles of chemotherapy, 18 months of ADT and 25 more radiation treatments. My radiologist, armed with the imaging from the C11 Choline scan was able to design a much better treatment plan.

The response has been great, PSA dropped to undetectable in six months and has stayed there. I have my last Lupron shot coming up on 4 May then we’ll monitor. I won’t say the last 15 months was fun but I did continue to exercise, work and travel, just completed the Memorial Bataan Death March, 26 .2 miles in the high desert at White Sands, NM.

So, my advice, do your homework, you are your best advocate, consider having newer PET/CT imaging to locate recurrence and inform your decision making. You have lot of options but keep in mind, aggressive PCa requires aggressive treatment decisions, that was one of my lessons learned.

Kevin

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@kanaazpereira

Welcome back, @donnelson,

I can imagine you must be quite worried, but we’re so glad to hear from you again. Thank you for reaching out to the Connect community.
I’d like to introduce you to @BuckyFestoon @giddyup1 @robertjohn @hamhock, in this Connect discussion, “Prostate Cancer,” http://mayocl.in/2nYLGbQ, with the hope they will return with some insight for you.

From my research, it seems that bicalutamide (Casodex), is part of hormone therapy, and one of the medications known as anti-androgens, which prevent testosterone from reaching your cancer cells; you can read more, here: http://mayocl.in/2oXbG8j
And, here is more information about a team of researchers from Mayo Clinic whose findings may have important implications for men who have a rising prostate-specific antigen (PSA) test: http://mayocl.in/2pjhKrn

@donnelson, what does your doctor say about the PSA level rising again?

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I have been using my Urologist only and he sent me to an Oncologist whom I met with yesterday. My PSA which had been as high as 350 and then nearly 0, after Lupron began to rise again. It is now 32. She has decided that the cancer is probably not responding to the Lupron (I've had 2 shots and am scheduled for another in August.) I am taking Trospium Chloride, Bicalutamide as well as the doxazosin Oxybutynin. She says the next step is Zytiga, which is evidently as costly as $12,000, along with Prednisone. I will take this as well as the others including Lupron. I wondered why I was sent to the financial counsellor which is understandable when you consider the cost of the drug. The next step if this doesn't work is chemo.
My cancer is evidently castration-resistant.
Any one have a similar situation and have done the Zytiga/prednisone regimen?

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Has any one tried Zytiga and prednisone?
My doc is recommending this (possibly $12,000 a month. Others tell me there are others which do the same thing but are older and cheaper

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Currently I am trying to decide the next step. My oncologist recommends Zyega and then Xtandi. Both are expensive but Zytiga I guess is the preferred next step. It would cost be (through my Health Plan about $3,000 a month. Xtandi, I understand,is a little less expensive but has some dramatic side effects. I had radiation several years ago and now he cancer has metastasized . I am still taking bicalutamide and 6-month Lupron shots.
Seems like everything is not working.

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I hear your discouragement. This is an up and down process and I have just had some "down time" but my recent tests are good (breast and ovarian cancer) and now I want to help others cope. I hope you have faith in your oncologist but if you waver,seek reassurance here and wherever you can. There are a lot of points of view on all of this. Trust yourself.

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For anyone in the Rochester, MN area, I want to let you know about a free patient education symposium: Living well with prostate cancer

Wednesday, September 5
1:45-5:45 p.m.
Greffen Auditorium
Subway level of the Gonda Building
Mayo Clinic, Rochester, MN

See details here: https://www.facebook.com/events/223582924980953/

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