Need an Advise and Info on Very Experienced Doctors and Centers to do Proton Treatment of the Prostate in Oligometastatic Setting

[CurrentSEO]

I have oligometastatic prostate cancer (I have very detailed profile if someone has time). PSA picked in 2020 at 13,000+ ng/mL and recent on the 1st of May 2023 it was 0.07 ng/mL.

I have some of the cancer that is FDG+ and PSMA-. I'm hormone sensitive. After the treatments that you can see listed below, my prostate is highly disfigured and barely reminds normal prostate organ, it is around 16 ml currently (at the start of the treatments it was close to 900 ml). There was three confirmed pelvic lympnodes and one right femur metastasis. Lymphnodes were cleared by Lu-177 and Femur by SBRT.

Summary of treatments during the last 3 years;

- Casodex 50 for 7 months;

- - TACE (chemoembolisation of prostate with Taxotere)

- Tulsa Pro to debulk prostate

- First time Orgovyx 3 months, then brake 3 months;

- Once Lupron 3 months shot, then 5 months brake;

- 5 infusions of Lu-177 (3 in 2022 and two in 2023)

- SBRT to femur lesion in 2023

- Currently straight 4 months on Orgovyx from January 2023

Prostate is very close or even might be attached to rectum fascia (so it is not really clear if Spacer can be inserted)..., also suspected invasion of bladder neck in the left side. Because of these, I was looking for Carbon Ion to treat the prostate (to minimize side effects). Italy and Heidelberg, and some Japanese centers so far all refused to treat it with Carbon Ion n oligo-metastatic settings. I'm corresponding now with Austrian MedAustron... but I'm not very convinced in there qualifications with prostate cancer specifically... and they still reviewing my files and images anyhow.

As a result, now I'm looking for the Proton Beam radiation as well. The most experienced centers with Proton radiation appears to be located in US. I'm paying out of pockets and it is really doesn't matter where to travel the proton center is located as long as they flexible and ready to treat my prostate in olygometastatic settings with hyperfractionation by Proton beam and doctors are very experienced with prostate cancer proton treatment and have urologists capable to insert properly fiducials and if possible in my case - then Spacer as well.

I will appreciate doctors and centers contact details and your personal experiences if any. Does not need to be from US only.

Thank you!

[Zennavigator]

I finished 28 treatments at the Emory Proton center for prostate cancer on April 28th (last Friday) I have some irritation and difficulty urinating but flomax prescribed by my oncologist has helped. Bowel movements are more frequent and looser as well. No other side effects so far.

[CurrentSEO in reply to Zennavigator]

Thank you!

[Zennavigator]

I didn't include, Emory Proton center is in midtown Atlanta, GA

[Nfler]

I have met with n listened to Dr Rossi at the proton center in San Diego per Dr Scholtz and he seems to be very experienced, comes highly recommended. He talked at Pcri bi annual seminar last month in La and stressed proton therapy can deliver a higher dose w less lateral radiation ☢️ and showed a lot of his results. I think he has about 19 years of experience and originally came from Loma Linda where they developed it… Good luck

[CurrentSEO in reply to Nfler]

Thank you!

[GeorgeGlass]

i hope things work out great for you. Sometimes these posts are confusing to me because my psa was 38 and they say that they suspect metastatic cancer but not confirmed but you had psa of 13,000 and they are saying it’s confirmed non- metastatic. Where did you do the treatments that confirmed is non metastatic? Maybe i should go there.

[CurrentSEO]

Hi George,

My cancer is oligometastatic from 2020, right femur lesion was confusing for some doctors reading images indeed, but it was there from 2020 MRI. Some Pelvic Lymph nodes was cancerous as well suspected by MRI results, confirmed by PSMA PET/CT in 2021.

I don’t remember where I wrote that it was confirmed non-metastatic for me ? If it is somewhere, point it out to me and I will correct it.

Very detailed information where I did treatments is in my profile.

My cancer is high PSA expressing, tumor volume was in 2020 so huge that non of the doctors I encountered believed that it could reach this size till they reviewed MRI images themselves, I was generally feeling well (except too often urinating having, considering this tumor size and PSA).

Some person can have metastasis all over with PSA around 2 ng/mL , some can have as you can see 13,000+ ng/mL and be oligometastatic.

PSA is just a number, doubling time is matter of course, mine from 2020 is 3.5 weeks if I do nothing. PSA together with FDG and PSMA PET/CT scans, MRI, histology and mutations testing can give better picture for each individual case.

I’m under opinion that almost all prostate cancers are micrometastatic, but in many people after definite treatment of prostate it remains dormant till their death and in some it wakes up after 1,…3…10….and even 20 years with metastasis🤷‍♂️

Prostate cancer in its varieties is confusing not only to you but to most doctors as well.

I’m on individual designed by me treatment plan because I can afford, lucky to find doctors who are ready to be my advisors, always used to take responsibility for my own decisions, and because I do believe that my cancer is quite unique and can’t feet standard SOC approach🤷‍♂️

Thank you!

[pilot52]

Dr. Seungtaek Choi, MD Anderson

[CurrentSEO]

Thank you!

[wilcoxsaw]

Dr Rossi, at the California proton Center in San Diego California is the most experienced proton doctor in the world. He was formerly the medical director at the Loma Linda University proton Center, and moved over to the California proton Center around 2012 as the medical director there. He has treated patients with protons for over 30 years, he is the most experienced, with the most up-to-date technology that you will find anywhere in the world. He has treated me with protons for oligometastatic prostate cancer with no side effects, when I was guaranteed to have had some if I would have used some of the top practitioners in Southern California using conventional radiation.

He is a brilliant doctor with an excellent bedside manner and is never in a rush when he met with me.

Hope this helps

Scott

[CurrentSEO in reply to wilcoxsaw]

Hi Scott,

I appreciate a lot your feedback and information!

I will definitely approach him. Can you give me please an idea how long it took for you from from the initial contact to actually starting treatment?

How many fractions did you receive?

Thank you!

[wilcoxsaw in reply to CurrentSEO]

After my initial consult with Dr Rossi where looked at my psma scan and said treatment was feasible, it took a couple weeks before I got in to do a pre-treatment planning CT and MRI, and then it was 2 to 3 weeks beyond that before I begin treatment while their physicists and dosimetrists and Rossi came up with my specific treatment.I was treated in 15 fractions. Dr Rossi decided that this would be the best to minimize any short-term side effects.

Hope this helps

Scott

[CurrentSEO in reply to wilcoxsaw]

Scott, very helpful, thanks a lot!

[Boatmanz]

I did my Proton Radiation here: procure.com/. They are located in Somerset, New Jersey. My doctor there is: Dr. Tsai, who was educated at Harvard Medical School. I had Gleason 9 prostate cancer and now after 2.5 years post-treatment, my PSA is 0.2.

[CurrentSEO in reply to Boatmanz]

Thank you! I will check it out.

[CurrentSEO]

Thanks, will do. I did myself some mistletoe injections in Germany and UK in 2020, they might have helped a bit or might not, hard to say🤷‍♂️ As far as I aware mistletoe not very effective with prostate cancer, but could boost immune system overall.

[Shellhale]

I am curious about the TACE procedure. I tried to get this done for my husband who is also restaged as oligometastatic. But Dr never called back, etc. Ended up getting IMRT 20 fractions to prostate only. He was dx 9/2023 with originally 12 lymph node mets to retroperitoneal. Lymph nodes were resolved so pelvis was not radiated. If you are interested in proton radiation any NCI designated cancer center should be able to answer questions. Husband's oncologist is located at CU Cancer Center Anschutz in Aurora, Colorado. He did not qualify for the space oar due to high gleason 9 aggressive PCa. RO said he never recommends this for higher gleason 8 or 9. There has been no studies showing any difference in efficacy of proton verses photon radiation. But for your specific situation that would be a question for the RO. How were your results from the TACE procedure?

[Shellhale]

I just realized this post was from 1 year ago, my apologies.