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

I orginal did Focal Laser Ablation by Dr. Sperling, I am on hormone therapy now and at first had to get accustomed to the hot flashes and cold sweats which have now eased with life quite normal. Although I am not as strong muscular wise and I do have morning joint pain which dissipates once I get moving. My PSA is now .1 and testo .5, I am due for another Lupron injection in a month. I also followed the Rick Simpson Oil (strain is Phoenix Tears 25% THC) protocol taking 60 grams in 90 days. I recently had a 3T multiparametric MRI which showed my prostate had reduced in size and the cancer has no lymph mets or no bone mets. I am actually feeling real good and I have no need for washroom visits during the night. I attribute my well being to the RSO and I am going to do another regime starting next week. I have a great deal of reluctance related to radiation because I can not get any straight answers on the risks all I am told is that i will have side affects that could be bad but have given me nothing but worst case scenarios which I am not pleased with. Oncologist has recommended 39 radiation treatments over 2 months. I am very hesitant with this protocol.I want to maintain a good quality of life even if that means life is shorter. I have had very positive results with RSO and that is why I am taking RSO (see the internet lots of information related to it). However you won't here that that from the medical profession. I do have first hand knowledge of a person with terminal lung and brain cancer who is now in remission for 3 years who followed the RSO protocol as a last hope. Its all a personal choice however advocate for yourself and get second opinions on everything. We are all different and you know yourself how you feel. I have encountered some very good medical professionals but I also encountered a great deal of arrogance related to my personal choices.

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@semeon

I orginal did Focal Laser Ablation by Dr. Sperling, I am on hormone therapy now and at first had to get accustomed to the hot flashes and cold sweats which have now eased with life quite normal. Although I am not as strong muscular wise and I do have morning joint pain which dissipates once I get moving. My PSA is now .1 and testo .5, I am due for another Lupron injection in a month. I also followed the Rick Simpson Oil (strain is Phoenix Tears 25% THC) protocol taking 60 grams in 90 days. I recently had a 3T multiparametric MRI which showed my prostate had reduced in size and the cancer has no lymph mets or no bone mets. I am actually feeling real good and I have no need for washroom visits during the night. I attribute my well being to the RSO and I am going to do another regime starting next week. I have a great deal of reluctance related to radiation because I can not get any straight answers on the risks all I am told is that i will have side affects that could be bad but have given me nothing but worst case scenarios which I am not pleased with. Oncologist has recommended 39 radiation treatments over 2 months. I am very hesitant with this protocol.I want to maintain a good quality of life even if that means life is shorter. I have had very positive results with RSO and that is why I am taking RSO (see the internet lots of information related to it). However you won't here that that from the medical profession. I do have first hand knowledge of a person with terminal lung and brain cancer who is now in remission for 3 years who followed the RSO protocol as a last hope. Its all a personal choice however advocate for yourself and get second opinions on everything. We are all different and you know yourself how you feel. I have encountered some very good medical professionals but I also encountered a great deal of arrogance related to my personal choices.

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Welcome to Connect, @semeon. I think you might find this journal article of interest.

– The current state and future perspectives of cannabinoids in cancer biology (2018) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5852356/

Treatment decision making is so challenging and defining quality of life is a very personal calculation. You may also find this discussion to be helpful when considering radiation or not:
– Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/

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@santi

You have been through a lot after your transplant although you sound like you will keep on fighting to eradicate all of the cancer. Great attitude! I came off double bypass open heart surgery 2 years ago and recovered. I am now faced with the challenge of prostate cancer. My Gleason score is 7 and the Urologist gave me a choice of surgery or radiation. I recently met with a Radiologist/Oncologist and he mapped out the treatment options to me. He knows I ruled out surgery so he advised to take hormone therapy coupled with radiation. The hormone shot was to last 6 months and within that time I would under go radiation treatment. The side effect could range from no Libido and no testosterone with the hormone shot. I opted for straight radiation which will consist of 28 treatments over 5.3 weeks. I start June 26th.

All the Best to you!

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I have been given the same treatment approach. I am on Lupron and don’t find it too bad. Initially a lot of hot and cold sweats with some joint pain. However joint pain is not severe. I am waiting for a second opinion on different types of radiation, looking at focal laser ablation and will start using Rick Simpson Oil as I believe it has helped me a lot.

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@markbenson

It seems most people are opting for radiation therapy. I have recently been diagnosed with Prostate Cancer. Gleason Score 7. After reading a 600 page book on the subject by Dr. Patrick Walsh, I decided I just wanted my prostate removed. I am 63 years old and not overweight. I was fortunate to have a friend who had a similar experience and he put me in touch with Dr. Ferrigni at Mayo Phoenix. I am scheduled to have a robotic surgery procedure on November 22. So many choices and options. I hope I’ve made the right choice.

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Meeting with the surgeon tomorrow for a consultation on robotic surgery. I have already consulted with Dr. Wong in Phoenix regarding proton beam therapy. I have localized prostate cancer, 2 spots 1 and 2 cm watched over the past several years with MRI, 67 yr old, PSA 8.5 and Gleason 7. Can you tell me about your surgery experience and any side effects or complications you experienced? Picking between robotic surgery and proton beam certainly isn't easy.

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@fairway5

Meeting with the surgeon tomorrow for a consultation on robotic surgery. I have already consulted with Dr. Wong in Phoenix regarding proton beam therapy. I have localized prostate cancer, 2 spots 1 and 2 cm watched over the past several years with MRI, 67 yr old, PSA 8.5 and Gleason 7. Can you tell me about your surgery experience and any side effects or complications you experienced? Picking between robotic surgery and proton beam certainly isn't easy.

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Hi @fairway5, welcome to Connect. You're so right that choosing between robotic surgery and proton beam isn't easy. There are so many factors to consider such as short-term and long-term potential side effects and quality of life, which are different each person.

I'm tagging a few other members, like @kujhawk1978 @cupman @norske46 @403211th @waynen @hodagwi @donnelson, who can share factors that helped influence their treatment decisions.

You may also be interested in this Video Q&A about Prostate Cancer, where Dr Castle talks about cutting edge advances using robots and proton beam
https://connect.mayoclinic.org/webinar/on-facebook-live-urologist-erik-castle-m-d-talks-prostate-cancer/

Fairway, what did you learn during your consult about proton beam therapy?

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@colleenyoung

Hi @fairway5, welcome to Connect. You're so right that choosing between robotic surgery and proton beam isn't easy. There are so many factors to consider such as short-term and long-term potential side effects and quality of life, which are different each person.

I'm tagging a few other members, like @kujhawk1978 @cupman @norske46 @403211th @waynen @hodagwi @donnelson, who can share factors that helped influence their treatment decisions.

You may also be interested in this Video Q&A about Prostate Cancer, where Dr Castle talks about cutting edge advances using robots and proton beam
https://connect.mayoclinic.org/webinar/on-facebook-live-urologist-erik-castle-m-d-talks-prostate-cancer/

Fairway, what did you learn during your consult about proton beam therapy?

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I chose robotic surgery in Jan 14 when I was diagnosed. At the time, it was that or radiation.

I felt surgery gave me the best chance of the gold ring, the cure. I also felt comfortable in the hands of a very skilled surgeon.

It was a very successful surgery, T2CNoMx, GS8, margins, ECE and seminal vesicles negative.

I was up and walking the afternoon after my surgery and discharged the next day. At home I started with short walks and gradually increased them. The catheter was not an issue, didn’t need any pain medications.

A week after surgery I was playing basketball, the catheter came out and I was dry, the surgery was nerve sparing so recovered function in 12-18 months with the help of Cialis.

I felt that if surgery failed, radiation would be an option to treat recurrence, the opposite was not necessarily true. So, having an option in case of failure, BCR, was important to me.

You can research pre-operative advice, if you go the surgery route your medical team should give you pre and post operative instructions, heck, there are videos you can watch of the surgery if you want, I did.

My surgery was successful in the hands of a very skilled surgeon and his supporting team.

Unfortunately I had BCR after only 18 months, SRT failed but after doing 18 months of ADT, six cycles of taxotere and 25 more radiation treatments my PSA remains undetectable a year after completing that regimen.

If you decide on surgery the choice of your surgeon is important. It helps if you are in good physical shape and your health is good, weight, BP, cardio…I was 57, weight under control, I was physically active, played basketball, lifted weights, ride my bike, swam, hiked in the mountains, went skiing…

Times have changed since my surgery and there are many more treatment choices, better imaging than the CT and MRI, combination therapy, just depends on how aggressive you and your medical team want to be but the tenets remain the same, do your homework, know your options, make your decision based on quality of life, side affects, possibility of a cure or length of remission. Be at peace with that decision and enjoy your time after in remission.

I hope whatever your decision it brings you long term remission or that “cure!”

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@colleenyoung

Hi @fairway5, welcome to Connect. You're so right that choosing between robotic surgery and proton beam isn't easy. There are so many factors to consider such as short-term and long-term potential side effects and quality of life, which are different each person.

I'm tagging a few other members, like @kujhawk1978 @cupman @norske46 @403211th @waynen @hodagwi @donnelson, who can share factors that helped influence their treatment decisions.

You may also be interested in this Video Q&A about Prostate Cancer, where Dr Castle talks about cutting edge advances using robots and proton beam
https://connect.mayoclinic.org/webinar/on-facebook-live-urologist-erik-castle-m-d-talks-prostate-cancer/

Fairway, what did you learn during your consult about proton beam therapy?

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After reviewing the nature of my prostate cancer, with a short physical and DRE, I was confirmed a candidate for surgery or external beam radiation therapy. We covered the benefits and side effects of radiation and advantages of the proton beam approach. All the details of how radiation therapy is planned and delivered were discussed. Next, the different fractionated schemes were discussed. The choices were 8 weeks (standard), 5.5 weeks (hypofractionated), and 5 days (ultrashort fractionated). If I selected surgery the possibility of additional radiation treatment, if adverse pathology was found, was also discussed. A clinical trial was also available for image guided radiation therapy with of w/out androgen suppression but I won't consider this because of rules about randomly being assigned to a group that didn't include proton beam.

I'm hoping someone who has been through 5.5 week proton beam therapy can share their experiences on Connect.

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@santi

I just completed 28 rounds of radiation therapy on 8/21. I have my PSA test sceduled for 9/26. My radiation/onclologist is shooting for a .5 – I was diagnosed last March with a Gleason score of 7 and the cancer is localized to the prostate gland. Previously my PSA was 4.7 …. I am hoping for the best. As a side note I would insist to your treating oncologist to have the SPaceOAR inserted prior to radiation as a added barrier of protection to your rectum. Good Luck!

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Just read your 9-9-2017 post. How are you doing now after your radiation treatment? Hope it had good results. Did you have Proton therapy? I just joined, had a MRI & will have a biopsy beginning August.

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@j4pcatreatment

Just read your 9-9-2017 post. How are you doing now after your radiation treatment? Hope it had good results. Did you have Proton therapy? I just joined, had a MRI & will have a biopsy beginning August.

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I had radiation treatment for two months everyday and Psi is good so far.Thanks

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