Anyone had the 5 treatment proton therapy for prostate cancer?

Posted by daveywavey @daveywavey, Aug 13 12:47pm

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

daveywavey @daveywavey I'm scheduled to have the SBRT starting the week of 9/14 at the Mayo Clinic in Rochester. If I was 15 years younger, I'm 72, I would probably go for removal. The 5 year results for the SBRT are the same as removal. They don't have a 10 year study since it hasn't been used that long on Prostate cancer I chose SBRT because it's much less invasive and the odds of being incontinent after radiation is much lower. Good luck on your decision making. I understand the stress you are under, I wish I would go to sleep tonight and in the morning it's 9/14. It seems that either way would require you to have Lupron that will cause you to have hot flashes, not fun.

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Hello @daveywavey, I would like to add my welcome to Mayo Clinic Connect along with @dandl48 and other members. I have BPH but am lucky enough to have it controlled by medications so far but understand the decision to have the treatment can be stressful. There is another discussion you might find helpful — Follow up after proton beam treatment: GREAT PSA NUMBER: https://connect.mayoclinic.org/discussion/great-psa-number/

You also might be interested in the following Mayo Clinic – Proton Beam Therapy Program – FAQs: https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/frequently-asked-questions/gnc-20187695

Are you able to discuss your concerns – pros and cons with your doctor?

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Hi @daveywavey, fellow member @cmartin65 asked the same question in this discussion:
– Anyone had Proton Beam SBRT radiation at Mayo Clinic? https://connect.mayoclinic.org/discussion/sbrtpbt/

CMartin, did you ultimately choose the 5 treatment protocol or 39?

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@colleenyoung

Hi @daveywavey, fellow member @cmartin65 asked the same question in this discussion:
– Anyone had Proton Beam SBRT radiation at Mayo Clinic? https://connect.mayoclinic.org/discussion/sbrtpbt/

CMartin, did you ultimately choose the 5 treatment protocol or 39?

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Haven't started any treatment yet but leaning towards SBRT/PBT when the time comes.

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I had 20 treatments, not the 5, but talked to someone who had 5. He was part of a study to determine the toxicity of the treatment compared to more doses. He didn't have any problems and the results I've seen indicated the 5 treatment option was no more toxic. After my first 5 treatments, I had pain while urinating. I started taking Flomax which took care of the problem and a year and half later still taking it. I also had more urgency for the first 6 months after treatment. I think these are pretty common side effects. Not sure what your Gleason score is, but if it's in the advanced level, 8+, you may need the antigen deprivation treatment as well to slow down the advancement of cancer, shrink the prostrate before treatment, and reduce risk of the cancer coming back. My Gleason was 8 and my doctor said the use of Lupron was important to increase my chances of survival. Not sure if it's used with surgery, but seems like it might be necessary to reduce chance of the cancer showing up in other organs. I would recommend you talk with doctors who are familiar with the research on treatment options before you make a decision.

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@johnbishop

Hello @daveywavey, I would like to add my welcome to Mayo Clinic Connect along with @dandl48 and other members. I have BPH but am lucky enough to have it controlled by medications so far but understand the decision to have the treatment can be stressful. There is another discussion you might find helpful — Follow up after proton beam treatment: GREAT PSA NUMBER: https://connect.mayoclinic.org/discussion/great-psa-number/

You also might be interested in the following Mayo Clinic – Proton Beam Therapy Program – FAQs: https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/frequently-asked-questions/gnc-20187695

Are you able to discuss your concerns – pros and cons with your doctor?

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Thanks John, for the information and for being a volunteer mentor. I'm getting closer to a choice for treatment and this site sure helps. I have talk to several doctors (surgeons and radiation oncologist). I know I'm in good hands either way. Best to you Dave

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@dandl48

daveywavey @daveywavey I'm scheduled to have the SBRT starting the week of 9/14 at the Mayo Clinic in Rochester. If I was 15 years younger, I'm 72, I would probably go for removal. The 5 year results for the SBRT are the same as removal. They don't have a 10 year study since it hasn't been used that long on Prostate cancer I chose SBRT because it's much less invasive and the odds of being incontinent after radiation is much lower. Good luck on your decision making. I understand the stress you are under, I wish I would go to sleep tonight and in the morning it's 9/14. It seems that either way would require you to have Lupron that will cause you to have hot flashes, not fun.

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Hi Dan, (I hope it's Dan) Thanks for sharing your journey with pc. I'm 65 and I'm have the same feelings as you do about surgery if I was younger. I do'nt have to take Lupron as my doctors thinks I'm in the favorable intermediate stage of pc. I'm leaning towards SBRT/PRT as I hopefully to start treatment in September. Hopefully we can share our positive results on this site later this year. Best of luck. Dave

Liked by dandl48 Dave

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@waynen

I had 20 treatments, not the 5, but talked to someone who had 5. He was part of a study to determine the toxicity of the treatment compared to more doses. He didn't have any problems and the results I've seen indicated the 5 treatment option was no more toxic. After my first 5 treatments, I had pain while urinating. I started taking Flomax which took care of the problem and a year and half later still taking it. I also had more urgency for the first 6 months after treatment. I think these are pretty common side effects. Not sure what your Gleason score is, but if it's in the advanced level, 8+, you may need the antigen deprivation treatment as well to slow down the advancement of cancer, shrink the prostrate before treatment, and reduce risk of the cancer coming back. My Gleason was 8 and my doctor said the use of Lupron was important to increase my chances of survival. Not sure if it's used with surgery, but seems like it might be necessary to reduce chance of the cancer showing up in other organs. I would recommend you talk with doctors who are familiar with the research on treatment options before you make a decision.

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Hi Wayne, Thanks for sharing your pc treatments and side effects with me. I had a Gleason score of 3+4=7 so the doctors don't think I will need Lupron. The 5 treatments is now a standard treatment at Mayo as they stop the trial do to favorable results. I'm leaning toward SBRT/PRT. Best of luck to you and I hope to chat with you again on this site. Dave

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@cmartin65

Haven't started any treatment yet but leaning towards SBRT/PBT when the time comes.

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Good luck making a decision. Sounds like we're in the same boat. Dave

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@daveywavey

Hi Dan, (I hope it's Dan) Thanks for sharing your journey with pc. I'm 65 and I'm have the same feelings as you do about surgery if I was younger. I do'nt have to take Lupron as my doctors thinks I'm in the favorable intermediate stage of pc. I'm leaning towards SBRT/PRT as I hopefully to start treatment in September. Hopefully we can share our positive results on this site later this year. Best of luck. Dave

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daveywavey @daveywavey Actually it's Dave also, not Dan. Dandl48 stands for Dave and lynn, my wife. Without looking up your past posts, are you going to have the treatment at Mayo Rochester? If so, maybe we can meet up in September since we will be out there for that month. It's great that you didn't have to take Lupron. I had 2 great days with only 1 hot flash each evening and then last night I might have gotten 2 hours sleep. Best of luck to you also!

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Hi Dave, Yea I going to be treated at Rochester. That would be great to meet up with you sometime there. I live in Madison WI. It's a 3 hour drive so I will probably have stay around Rochester some of the time during treatment. My wife Jan and I have a camping trailer so we will try to use that for our visits. I 'm having the marker and spacer placement next Tuesday and simulation and MRI on Thursday . I don't know when the treatment will start yet. Hopefully in September. Now I just want to get it done. I'm sorry to here your not getting much sleep. That's no fun. Best regards Dave

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@daveywavey We arrive 9/6 and are staying at an inexpensive VRBO. Just found out that Hope Lodge has reopened that gives free lodging to people getting treated for cancer. You might want to give then a call. https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge/rochester-mn/about-our-facility.html

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Thanks for the information on Hope Lodge. It looks like I'm going to start radiation the week 0f 9/14 also. Must be the week they treat Daves.. So getting together should be possible.

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@dandl48

daveywavey @daveywavey I'm scheduled to have the SBRT starting the week of 9/14 at the Mayo Clinic in Rochester. If I was 15 years younger, I'm 72, I would probably go for removal. The 5 year results for the SBRT are the same as removal. They don't have a 10 year study since it hasn't been used that long on Prostate cancer I chose SBRT because it's much less invasive and the odds of being incontinent after radiation is much lower. Good luck on your decision making. I understand the stress you are under, I wish I would go to sleep tonight and in the morning it's 9/14. It seems that either way would require you to have Lupron that will cause you to have hot flashes, not fun.

Jump to this post

SBRT sounds like a good treatment approach. For myself I looked at many options short listed HIFU and FLA and chose focal laser ablation. I had 2 treatments one in 2014 and one 2018. The treatments were significantly less invasive then radiation.

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@semeon May I ask where you have the FLA in 2014? Mayo Rochester is just starting a study on it. Also would you mind sharing your PSA #'s prior to and after each FLA. Finally could you share your Gleeson score. FLA seems to be a good possible option for treating low-risk native prostate cancer. Mine Gleason score was 4+3 intermediate.

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