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

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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I went thru radiation 12 years ago and now in last 2 years psa went from 0.5 to 4.3. I was told now to go with cryotherapy treatment. Has anyone gone thru this treatment and how long did it last, Thanks, Jack

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@hughj37

I went thru radiation 12 years ago and now in last 2 years psa went from 0.5 to 4.3. I was told now to go with cryotherapy treatment. Has anyone gone thru this treatment and how long did it last, Thanks, Jack

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Hi @hughj37, welcome to the group. I'm tagging @airjohn who had cryotherapy to treat prostate cancer. Not sure if he is still getting messages from this forum, but it's worth a try.
In the meantime, here's some information about cryotherapy from Mayo Clinic https://www.mayoclinic.org/tests-procedures/cryotherapy-for-prostate-cancer/about/pac-20384740

Hugh, when are you scheduled to get cryotherapy?

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I am waiting on my last psa report and then will have to make the decison. The problem is I will have to drive to another city to get it done. I am almost 82 and not sure if I want to go thru with it

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@hughj37

I am waiting on my last psa report and then will have to make the decison. The problem is I will have to drive to another city to get it done. I am almost 82 and not sure if I want to go thru with it

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New to this site and appreciate what everyone has been through. Now my situation does not seem that bad. 2012 during annual visit to urologist, he felt nodule, PSA was 1.67. Biopsy 7 ,successful surgery by Dr Andriole, Wash U, St Louis. April 2017 PSA .04. Now .19. Urologist recommending radiation. Age 72 and heard horror stories about side affects of radiation. Anybody with similar situation, and how did you handle it?

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A friend had seeds implanted to treat prostrate cancer and now has problems with urgent diarrhea. Anybody have similar or know how to treat it?

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Hello @albin,

Welcome to Connect. I moved your message to this existing discussion about prostate cancer; click VIEW & REPLY in the email notice to read through the discussion and meet other members.

Prostate brachytherapy is a form of radiation therapy used to treat prostate cancer, and permanent prostate brachytherapy involves placing radioactive seeds in the prostate gland permanently, where they slowly release radiation. Radiation can irritate the rectum and cause a condition called radiation proctitis. This can lead to diarrhea, sometimes with blood in the stool, and rectal leakage. https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

Has your friend been told to follow any special diet to control bowel movement? How is he managing the diarrhea?

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He is trying things on his own but has not received anything official

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Hi everyone,
A new group dedicated to prostate cancer has just been opened. I have moved this discussion to the new group. See here:

> Prostate Cancer https://connect.mayoclinic.org/group/prostate-cancer/

Be sure to +FOLLOW the group and keep connecting.

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@ronoir

I was advised to check my p.s.a.in 3 mos. and if above .20 then radiation would be of no value given the involvement with lymph nodes , seminal vesical, fatty cap and margins and that the cancer would have most likely moved beyond my prostate bed in which case ADT was recommended. Given the potential risks of radiation and with only 25% chance of it (radiation) doing me any good at this point im reluctant to go the radiation route even though just below .20 so far. Thank you for your input and any additional will be very appreciated

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I was initially diagnosed in 2014 and was offered a treatment paths that proposed surgery or radiation (brach). I did not like either and rsearched other treatment protocols. During this period I changed my diet to an alkaline diet, did a 2 month regime of high dose vitamin C via IV and even did 12 sessions of hyperbaric treatment. Finally I decided on a treatment offered by Dr Sperling – Focal Laser Ablation which held my PC at bay until a recurrence in June 2018 when Dr. Sperling undertook an MRI guided biopsy. Subsequent to the diagnosis which was reconfirmed by John Hopkins, I followed up by taking Metformin and Casodex for a couple months when I did another ablation by Dr Sperling. Subsequent to this ablation Dr. Sperling recommended I go on Lupron and follow up in 6-12 months with radiation. My PSA is point .1 and testo .5, However another thing I tried which I believe was tremendously helpful was Rick Simpson Oil – Phoenix Tears (lots of material on the internet about it). I tried it because a friend of mine's wife who was terminal with lung and brain cancer tried it as a last resort and that was 3 years ago. The RSO protocol calls for a person to take 60 grams of Phoenix Tears over a 90 day period. My most recent 3T MRI has shown my prostate has reduced in size and I am waiting on a consult with Dr Sperling to read my MRI as the Canadian radiologist lacked the experience in reading it with my post ablation treatment. I know it has done something because my Lupron side affects are minimal and I am no longer waking to go to the washroom many times through the night. I usually wake about 6 am or later for that chore. Taking RSO does have side affects it does "buzz" you out quite a bit once you get to the 1 gram per day dose. However, I usually took it in the evening around 8, it would kick in about 10 and I slept "like a stone" for a good 10-12 hours. Anyway this is my experience so far and I am still very reluctant on radiation since risks prevail. I am planning on starting my next go around with RSO next week and if you have any questions feel free to ask.

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