1. < Prostate Cancer

Anyone had the 5 treatment proton therapy for prostate cancer?

Posted by daveywavey @daveywavey, Aug 13, 2020

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

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mrscott | @mrscott | Nov 2, 2022
In reply to @waynen "I had 20 treatments, not the 5, but talked to someone who had 5. He was..." + (show)
@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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If you have to have Lupron, it is very damaging; for those who don't have an expert care team, you need to know about some simple ways to reduce the damage:
https://youtu.be/6duRbpY-WkI
https://youtu.be/clrbntmjohg
https://youtu.be/4ELsojPFNV8

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2 replies
jb2buckwater | @jb2buckwater | Nov 2, 2022
In reply to @mrscott "They are planning to recategorize Gleason 3+3=6 as not being "cancer" because it is known to..." + (show)
@mrscott

They are planning to recategorize Gleason 3+3=6 as not being "cancer" because it is known to not metastasize. It's benign: it stays in the prostate and will not kill you.

Still need to monitor (AS), as it may mutate into Gleason 3+4=7 etc, or there may be 4 or 5 present but missed by the biopsy.
https://youtu.be/NV8QHzbgamI

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Great Clip. It should be mandatory watching for anyone who is told they have Prostate Cancer and should start planning an attack plan potentially including Radical Prostectomy. Thank you for sharing.

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waynen | @waynen | Nov 2, 2022
In reply to @mrscott "If you have to have Lupron, it is very damaging; for those who don't have an..." + (show)
@mrscott

If you have to have Lupron, it is very damaging; for those who don't have an expert care team, you need to know about some simple ways to reduce the damage:
https://youtu.be/6duRbpY-WkI
https://youtu.be/clrbntmjohg
https://youtu.be/4ELsojPFNV8

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Thanks for posting this video. It is one that men facing treatment should see. One question is the impact difference between short term use of ADT and long-term use. I was on 18 month treatment in conjunction with radiation. My brother had 6 month treatment but I know men with metastatic cancer who are on long-term treatment. It's been 2.5 years since the end of my treatment and I no longer have any noticeable side effects. I have an annual checkup this Spring and will ask about the co-treatment options. I did have an infusion of reclast to deal with bone loss, but told return of testosterone would solve issue.

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mrscott | @mrscott | Nov 2, 2022

One of the medications to reduce the side-effects is statins. There's an online calculator for whether you should be taking them anyway, to reduce your cardiovascular risk; turns out I should be.

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1 reply
curious10 | @curious10 | Nov 2, 2022
In reply to @dandl48 "@semeon May I ask where you have the FLA in 2014? Mayo Rochester is just starting..." + (show)
@dandl48

@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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HI, My husband has the same Gleason score as you. I gather you have started or finished treatment at Mayo. He has his first appt next week for treatment. How did your treatment go may I ask? You had the SBRT right? My husbands prostate is 76 for volume. I am thinking he has to have the hormone therapy first. Is this what you did? Thanks CAD

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3, 2022
In reply to @curious10 "HI, My husband has the same Gleason score as you. I gather you have started or..." + (show)
@curious10

HI, My husband has the same Gleason score as you. I gather you have started or finished treatment at Mayo. He has his first appt next week for treatment. How did your treatment go may I ask? You had the SBRT right? My husbands prostate is 76 for volume. I am thinking he has to have the hormone therapy first. Is this what you did? Thanks CAD

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Welcome, @curious10. I’m tagging @dandl48 @semeon and @mrscott to make sure they see your post and questions to them.

Is your appointment next week your first time to Mayo Clinic? Which location are you going to?

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1 reply
mrscott | @mrscott | Nov 4, 2022
In reply to @mrscott "If you have to have Lupron, it is very damaging; for those who don't have an..." + (show)
@mrscott

If you have to have Lupron, it is very damaging; for those who don't have an expert care team, you need to know about some simple ways to reduce the damage:
https://youtu.be/6duRbpY-WkI
https://youtu.be/clrbntmjohg
https://youtu.be/4ELsojPFNV8

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Note: only two of the three links show previews.

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mrscott | @mrscott | Nov 4, 2022
In reply to @mrscott "One of the medications to reduce the side-effects is statins. There's an online calculator for whether..." + (show)
@mrscott

One of the medications to reduce the side-effects is statins. There's an online calculator for whether you should be taking them anyway, to reduce your cardiovascular risk; turns out I should be.

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I do worry that spreading this info will prompt someone who needs ADT to avoid it (alive is generally better than dead). However I am also concerned about those who don't need it getting it, and those taking it whose doctors aren't aware of the simple, safe additional measures to reduce the damage.

See:
https://youtu.be/6duRbpY-WkI

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dandl48 Dave | @dandl48 | Nov 4, 2022
In reply to @curious10 "HI, My husband has the same Gleason score as you. I gather you have started or..." + (show)
@curious10

HI, My husband has the same Gleason score as you. I gather you have started or finished treatment at Mayo. He has his first appt next week for treatment. How did your treatment go may I ask? You had the SBRT right? My husbands prostate is 76 for volume. I am thinking he has to have the hormone therapy first. Is this what you did? Thanks CAD

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@semeon In June 2020 I had a hormone therapy shot (Eligard) and at the end of September I had the 5 treatments over a 10 day period via SBRT at Mayo Rochester. Since then my PSA remains <0.1, last tested in September. The SBRT was the easiest treatments I have ever received. I was 72 when I had the treatment. Do have to say one side effect I have is zero sex drive with extremely low Testosterone levels. In the process of exploring options to correct the situation.

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curious10 | @curious10 | Nov 5, 2022
In reply to @colleenyoung "Welcome, @curious10. I’m tagging @dandl48 @semeon and @mrscott to make sure they see your post and..." + (show)
@colleenyoung

Welcome, @curious10. I’m tagging @dandl48 @semeon and @mrscott to make sure they see your post and questions to them.

Is your appointment next week your first time to Mayo Clinic? Which location are you going to?

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Thank you, Yes mayo Rochester , first time

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