Anyone had the 5 treatment proton therapy for prostate cancer?

How are you and your husband doing @curious10 ?

I thought I had replied but maybe it didn’t go through. He has decided on surgery with Dr. Shah in January. Dr Git’s did a great job explaining the radiation options but the hormone therapy just didn’t appeal to him.

I am currently undergoing 10 day proton beam sbrt at Mayo Rochester. I am having similar side effects to what you are experiencing. So, I have doubts that switching therapies would bring you relief. I would look to prescriptions that help bring you relief for the symptoms. I'm taking Tamsulosin for the urinary frequency and pain. It seems to help a little. I'm still looking for something to help with constipation and pain defecating. Some on this forum have said these side effects decline after the procedure is completed. I hope that's true. Two more sessions to go and I'm done. Forever, I hope.

He is doing great, still has to wear a pad but nothing like at first, improving all the time . His PSA is negligible so that is the main thing.

Its been 9 years since I had Proton therapy (12) for my mild prostate cancer treatment, and I still have a basket full of issues. 1) can't get a full erection or even keep the 80% I can get; 2) can't ejaculate; 3) takes a long, long time to get to a mild orgasm; 4) painful urination most of the time; 5) have to pee about every hour to an hour and a half; 6) get up at least six time a night to pee due to the pain waking me up when my bladder fills with just 3-4 oz; 7) bladder wall has nonhealing scarring from the radiation which causes the pain; 8) and I sometimes have loss of rectum sphincter control (several "accidents" have happened over the years).
I have been to 5 different Urologist over this time; tried Hyperbaric therapy twice; several drugs; so far no solutions.

@protonpain I feel your pain, how old were you when you had the Proton Therapy and where did you have it? I think you were one of the first to have this treatment. I just celebrated my 3 year anniversary with my PSA still at < 0.1 I do have problems but not as bad as you. What's an erection, let alone ejaculation? No pain in urination and only get up 1 or 2 times at night. Do suffer from a shrinking penis. No problem with rectum sphincter control. I was 72 when I had the 5 treatment Proton treatment with ADT before along with the balloon inserted. Sounds like you didn't get the balloon inserted, Correct? I was 4-3 with Gleason. For me and my wife being cancer free was and is more important than intercourse, but that's just us. Where did you have the treatment?

I was 64 when I had the treatment at MD Anderson. Oh yeah, #9 on my list - shrinking penis!
Yes, I did have the balloon insertion. PSA's have been < 0.5 consistently. You are correct, being cancer free is pretty good.

My son has prostate cancer and now they found a spot on his
liver. What is SBRT/PRT? Lupron?
I am a Breast Cancer survivor, 2001, 2017,,2020, 2023. I had 35 treatments of radiation in 2001 followed by several drugs for 7years . But the cancer kept
coming back, I had lumpectomies and just this summer had a mastectomy. I am 83 years young. After my first cancer , I never had any treatments or drugs.
Thanks,
Norma

Hi Norma, @ojosverde, You must be so worried about your son. Let me start by spelling out the acronyms
SBRT = Stereotactic body radiotherapy
Here's more information about it from Mayo Clinic https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794

PRT or PBRT = Proton beam radiation therapy (or Proton therapy)
https://www.mayoclinic.org/tests-procedures/proton-therapy/about/pac-20384758

Lupron is a type of hormone therapy used to treat prostate cancer that is fueled by testosterone.

What treatment is being suggested for your son? How is he doing?

ojosverde,
sorry about your son's cancer. Cancer treatments are never easy.
Stereotactic in SBRT means the tip of a beam of radiation is directed in three planes using medical imaging to locate the precise location of the lesion. Because the location is precise less damage is done to surrounding tissue.
Proton in PRT is a different part of the atom. Primarily radiation therapy uses photons. The advantage of proton is that they can direct the strongest part of the beam into the tumor.
There is no exit damage from the beam. You still have entrance damage. And there may be equal, more, or less damage to the tissue at the sides of the beam. Controversy surrounds the advantage of either.
Lupron is an anti testosterone medication that slows the progression of tumors and slows metastasis. Orgovyx is a newer testosterone inhibitor said to start inhibition sooner and without the flares attributed to Lupron. Lupron is by injection. Orgovyx is oral.
Side effects are unpleasant. The most worrisome is depression. It is important to be gentle and not take personally any behaviors (especially verbal) during administration of this class of drug.
If you son has not had genetic testing (somatic) of the tumor itself. He might ask for Decipher. It can help with treatment options by indicating prognosis. He could also have familial genetic testing. It may be inherited with BRCA genes.
The radiation treatments are the easy part.
I had proton for GI cancer five years ago at California Proton. Carl Rossi has probably the most experience with the treatment because that is the cancer he treats. The treatment is painless.
Aftercare for cancer is not great. I had to fight for each pet/ct thereafter. After care for prostate cancer is better because it is more easily detected through PSA. I hope your son takes advantage of rehabilitation programs and mental health programs. They are especially important with prostate cancer.
Bless you and best wishes for your son's health