Proton Beam Therapy

[woppaginny]

Has anyone had Proton Beam Therapy for their prostate cancer. I have read up on it but would like to know some personal experiences from anyone who has had this treatment. Preferably anyone who had proton beam therapy at Penn Medicine at Lancaster General in Lancaster, Pa. but anyone who has experienced this treatment will help me see what to expect. Thanks in advance.

[NanoMRI]

Not what you're asking for - but can share eight years ago I looked into several radiation and focal therapy methods, but based mpMRI findings several doc's I consulted with did not believe there was sufficient safe margins because of where my tumor was located. Hope this helps.

[wilcoxsaw]

I've had proton beam therapy. I'd suggest that you contact the Brotherhood of the Balloon which you can Google, and send an email to Deb Hickey at the BOB requesting a patient reference list. You will find her contact information on the BOB website. You will get the names of many patients, possibly hundreds , which you can call on the phone or email and ask direct questions to each about their experience having had proton beam therapy. I would also suggest that you contact the two centers that you are considering treatment at, and ask if they have a reference list of former patients that you could contact.

If you wish to speak to me directly please send me a message via this forum and I will give you my contact information.

Hope this helps

Scott

[Jpburns in reply to wilcoxsaw]

I checked out the BOB site. It looked interesting, but the amount of personal information the REQUIRE to sign up is really onerous. Why do they need my address? Details of my treatment plan? Forget that. Not for me.

[wilcoxsaw in reply to Jpburns]

You do not need to sign up. Send an email requesting reference lists so you can talk to men directly. Send your request to [e-mail]. Deb Hickey, the administrator, has many different reference lists available. Reference lists by Gleason score, age, occupation, possibly centers treated at, if you are interested in speaking directly to patients this is your best bet.

[Jpburns in reply to wilcoxsaw]

Yeah. Too complicated. But thanks.

[icanwintwice]

i had 39 treatments of proton therapy radiation at MD Anderson in 2015. My cancer came back in 2022. Id had cancer for 5 years before I started treatment. They tell me and I believe the cancer got( maybe a couple cells) out before my treatment.

Having to have a bladder at a certain level full of water every day to enter the radiation room was tricky and uncomfortable. And the balloon will def get your attention. But its 45 seconds then your done. After about 20 treatments I started to feel bad after each radiation treatment. Finished fine. No significant side effects.

I ate twenty miligrams of viagara every day to keep the blood flowing.

Look up Brotherhood of the balloon!!

[hopefull99]

I finshed 39 sessions of proton therapy in late December at the CA Proton Center (UC San Diego).

I had my prostate as well as 3 mets radiated. My understanding is that Protons provide much better margins than the alternative.

One important thing, a gel spacer inserted between prostate and rectum to provide significant margins and prevent / reduce side effects.

[Hidden]

I had proton therapy on a rib. Follow-up therapies on other bones, I elected to go with SBRT. I’m not aware of an overriding advantage of Protons.

[Atdabeach]

I had 44 sessions of proton therapy at Sibley Hospital in D.C. (part of the Johns Hopkins system). 5 days a week for 8.5 weeks. No big deal, except for the inconvenience (we rented an apartment nearby for that time), and the people were great.

[GoHoos88]

I received 28 Proton treatments in 2022 in Baltimore. I chose it over surgery and radiation after reading Robert Marckini's book. Went to work every day with very little side effects. A few months later I did have some rectal bleeding but cleared up. I definitely recommend it and also recommend Brotherhood of the balloon.

[Omalley]

I had Proton at Loma Linda around 2009' They gave me 25 Proton treatments and then switched me to 3D conformal since I was Gleason nine and they needed to radiate a larger area. If I had it to do again knowing what I do now I would refuse the 3D. It caused most of the bladder and urether problems I have had in my opinion. I would do straight Proton again if I had it to do over. Whoever told you to contact Proton Bob's daughter and to get their book was spot on, it lays it out pretty well. Can't really complain, been fifteen years I'm still here. PSA .3 been that way all along. Like I said bladder side effects, bleeding, cured with HBOT I hope.

[wilcoxsaw in reply to Omalley]

Yes, you are correct that most of the side effects you experienced were because of the photon radiation that was given to you in conjunction with your 25 proton treatments. The standard of Care at Loma Linda was, and I believe continues to be, a combination of protons and photons in cases of high Gleason scores such as yourself which was a Gleason 9. In order to radiate that larger area that you mentioned you could not have done straight proton at Loma Linda, because the scatter beam technology that they use does not allow them to treat that large of a field. That is the reason why they expanded the treatment area by using additional radiation with Photon beam radiation. Clearly, given your PSA of 0.3, your treatment done in 2009 was an excellent choice. I was treated at Loma Linda in 2012.

[LongTimeRunning]

My father-in-law had proton beam therapy at Loma Linda in his late 70s and it worked well for him over some number of treatments. PSA was around 20, now negligible. He is 88 now.

[j-o-h-n]

From Uncle Googie:

Join MSK radiation oncologist Nancy Lee on a tour of the New York Proton Center and see what it's like to receive a highly targeted form of radiation called proton therapy.

Video Details

The New York Proton Center is a state-of-the-art facility established as a partnership between Memorial Sloan Kettering, Montefiore Health System, and Mount Sinai Health System. Opened in 2019, the new center is one of nearly 40 in the country — and the first in New York State — to offer this advanced treatment for people with cancer.

Proton therapy is a highly targeted form of radiation therapy. It destroys tumors using charged particles called protons. These particles are delivered directly to cancerous cells. The precise nature of proton therapy lowers the impact to normal tissue surrounding a tumor and reduces the risk of treatment-related side effects. Because of its accuracy, proton therapy can also be used in complex cases, for challenging tumors or those located near vital organs, and for pediatric cancers.

The New York Proton Center is located at 225 East 126th Street in the East Harlem neighborhood

Good Luck, Good Health and Good Humor.

j-o-h-n

[mababa]

woppaginny, I consulted a proton RO at the Fred Hutchinson CC in Seattle for a second opinion regarding RT. It’s the “premier” treatment center in the NW, where I live. For my case, he didn’t believe Protons would be a better alternative. There are certain cases where the radiation deposits need to be tightly controlled, such as with brain tumors. Proton beams can do that. But what he likes about photon radiation is that it can be guided in real time with CT. He thought it a better solution. And he recommended the spaceOAR, said it can reduce extraneous damage by 50%. Also said in large studies there isn’t a notable difference in results between Proton vs Photon treatment for my particular cancer locations.

[AlanLawrenson]

Hi

Had had PBT in Seoul, South Korea in 2013. Great result plus a great 3 months holiday. I strongly recommend it.

Read my book An ABC of Prostate Cancer Today - 3rd Ed available from Amazon in Kindle or print format. It explains the technology and my experience in detail.

[max00]

Reader's Digest Version: I had Conformal Beam Proton Radiation Therapy 24 years ago at the age of 50 at Loma Linda Medical Center, PSA maxed around 17, dropped to less than one. I was cancer-free for 14 years. Then I was diagnosed as stage Four 10 years ago. I'm still here and kicking going on 24 years now. Proton Therapy has improved since then. Pencil Beam Proton Therapy is now in use at some Proton Therapy centers. I believe it's more accurate than what I had and likely has less chance of side effects. If you want to know more, please email me through this site. Here's a link for Pencil Beam Proton Therapy:

mdanderson.org/cancerwise/p...

BTW, I had Pluvicto Theranostics for my cancer, several months ago. So far, so good!

[Hidden]

I just joined this forum….i had Proton Beam Therapy..,..48 on my prostate and 30 on spots on my bones….If you’re still considering I will post more info and results