Mayo Clinic Connect
Hi to all,
I am considering the 5 treatment proton therapy for my prostate cancer. It's that or surgery for me. I am in the anxiety fueled treatment quandary. Thanks Dave
Liked by Kelly Hahn, Connect Moderator
I was diagnosed in 2014 and my PSA was 14 Gleason was 3+4. After the first treatment I did not have a catheter took a Tylenol for minor pain and had a couple rum. PSA dropped also don’t remember have to look on my computer i think it was around 3 or 4. Dr. Sperling at Sperling Prostate Clinic in Florida. In 2018 I had a check with Dr Sperling my PSA was around 6. So I asked Dr Sperling for another treatment (he did not charge me for it). It was a bit more intense and I had a catheter for a week. Dr. Sperling recommended follow up radiation to be safe as well as casodex and Lupron. I took the casodex for 3 months and have been on Lupron for 2 years. When i returned to Canada I saw my oncologist but told her that I did not want radiation. My quality of life is much more important to me then longevity however everyone will look at it through there own eyes. I have been stable for the last 2 years and my PSA has been consistently around .2. The Lupron has had some unpleasant side affects hot/cold sweats, sore joints, fatigue, loss of strength all better then the alternative. You may also want to look at Rick Simpson Oil protocol it’s marijuana oil called “Phoenix Tears”lots of info on the internet. If you send me a private message with your email I can send you a bunch of info. I had to pay for the treatment since I live in Canada. However in the USA my understanding it’s covered by insurance.
Oh yes the RSO is very good if you have nausea or sleep problems. I take it about 8pm. It kicks in about 10:30-11 then I go to bed and sleep a good 8-10 hrs don’t even wake for the bathroom. It works well and has good reviews for anti cancer. I got introduced to it through a friends wife who had terminal lung and brain cancer given a couple months to live. I talked with her daughter who started her on RSO. That was almost 6 years ago now. Amazing!
If you send your Medical Info to Dr Sperling he will tell you straight if you are a good candiate
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I'm committed to the SBRT but thanks for all the info.
I completed a 5-treatment SBRT in August 2019. I completed 2 follow-up exams. PSA levels at Feb, 2020 & Oct 2020 remain suppressed at 0.44 (was at 13.7 prior to treatment. By sheer luck, I was treated at the only VA oncology dept in the USA that offered the proton treatment. And, my doctor was a pioneer in the 5-treatment protocol during residency training at MSKCC in NYC. My doc had performed hundreds of these 5-treatment protocols.
PRE-treatment prep is ESSENTIAL (for me 6 visits) The exact, precise 3D imagining & position of your prostate needed to guide the delivery of radiation ton within 1mm of the boundaries of the prostate is crucial. Then, one must carefully follow all instructions as to fluid consumption prior to each treatment to ensure the prostate assumes the same 3D location as was achieved in the pre-prep imaging process. Finally, it is crucial in the pre-prep that the placement of the spacer between your prostate and rectum is dead-on to void harmful radiation exposure to the rectum
Finally, expect near-term urinary and ED issues.
Q – how experienced is your oncologist with the 5-treatment protocol? Equally important – how unified & disciplined is the doctor's pre-pre & treatment TEAMs (and I mean a TEAMs) with the procedures procedures
Liked by Colleen Young, Connect Director, John, Volunteer Mentor
Thanks for the reply. I finished 5 treatment Proton SBRT a couple of weeks ago at Mayo. Mayo has been using this treatment for a couple of years. They used the same pre-treatment prep as you described. So far side effects are very tolerable. I glad to here your follow up PSA tests have been great. A friend of my finished proton SBRT right after me and he is doing OK too. Hopefully we can follow you in beating PC.
Liked by Colleen Young, Connect Director
I finished the 5 Treatment Proton SBRT over a course of 11 days on 9/28. We drove 2,200+ plus miles each way and felt like a cleaning lady with the amount of disinfectant we used in 4 motel rooms each way and the VRBO we stayed at within walking distance of the Clinic. As daveywavey @daveywavey said the side effects are tolerable so far. Now the wait to see what my PSA is in 6 months and again in 12 months. I will be back at mayo for the 6 Mo. PSA since there are other health issues that needs tending to.
@quantumflow, welcome to Connect. You mention near-term urinary and ED issues. How are those issues for you now?
Liked by John, Volunteer Mentor
Getting up frequently during sleep continues. Also, ED continues. Certain drugs have been suggested for both issues. Time will tell. But, I can't lose sight of the fact that I am pretty much cancer free!!
I know the feeling. I get up several times a night
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