Recommendation for second opinion on prostate MRI scan?
Interested in finding radiologist experienced in reading MRI scans of prostate to provide second opinion.
Thanks!
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
My Decipher score was 0.37 Low Risk with a tissue sample that was 3+4=7. However, the part that was rated a 4 by the pathologist was indicated as representing only 5% of the core. The two RO doctors I consulted with at different major hospitals were both, say, in their sixties. I mention this fact because when I consulted very recently with my urologist, he made a point in saying that "older" ROs usually push radiation treatment since that's how they were trained. My urologist who is in his 30s was not in this camp. While he would not commit to telling me what to do, the vibe I felt was to opt for Active Surveillance. He said most of his Low Risk patients are under AS. The idea is to monitor the prostate very closely using regular PSA testing and then have an MRI with biopsy either once a year (or maybe every other year). He highly recommended the free Prostate Cancer Patient Guide which is emailed to you from here https://www.pcf.org/guide/prostate-cancer-patient-guide/ Once you have it, go to page 37 where AS is discussed. For now, I plan to rely on AS. Then, if my PSA rises to a specific level I'll consider radiation using Viewray MRidian at the NewYork-Presbyterian David H. Koch Center in NYC. In addition, please read the encouraging results of this long term study https://www.nbcnews.com/news/us-news/study-finds-prostate-cancer-treatment-can-wait-men-rcna74512 MRidian has a number of locations in Florida: See https://viewray.com/for-patients/how-mridian-works/prostate/ Sorry for the slow response.
Much appreciation for this info. I was looking at MRidian Viewray but saw bankruptcy notice last month and had given up on that approach. Someone on another forum indicated that Viewray had found a way to to continue treatment for patients. It certainly looked like one of most promising treatment options out there and hopefully still is.
Yes, I think that MRdian will remain in the game going forward. Keeping a lookout for any press releases from them is a way to be informed. My strategy is to give AS a chance for a year or two and see how it goes. I am also keeping a close eye on the progress of radiopharmaceutical research. The concept is the patient would receive an IV that contains 2 components. The first one seeks out the PSMA protein which is present in all prostate cancer cells. Once this is established, the second component enters the cancer cells and completely destroys their DNA preventing them from growing/spreading (think dead cells). This is accomplished with no damage to any healthy cells/tissue! This technique has already been used only on advanced prostate cancer patients with fairly good results and is FDA approved. More research, clinical trials and FDA approval will be needed before it's ready for us Low Risk persons. Educate yourself by reading these articles:
https://www.cancer.gov/news-events/cancer-currents-blog/2021/prostate-cancer-psma-radiopharmaceutical-vision
https://www.onclive.com/view/new-class-of-radiopharmaceutical-therapy-makes-headway-in-prostate-cancer#:~:text=PSMA-targeting%20small%20molecule%20inhibitors%20and%20mAbs%20are%20conjugated,Research%20groups%20in%20Germany%20initially%20developed%20both%20therapies.
As you can see, a solution may be just around the corner for us. The second article talks about mCRPC which is Metastatic Castration-Resistant Prostate Cancer. Then talks about mAbs which are monoclonal antibodies.
merwether, I did my proton radiation treatments at University of Florida Proton Therapy Institute (UFPTI). I finished 30 rounds of radiation on July 5th. If you plan on doing it there and want some feedback I can help with information.
I had my MRI with a contrast and probe at Mayo Jacksonville. It showed suspicious areas. I then had MRI/Fusion biopsies which confirmed prostrate cancer. I was listed as intermediate risk as highest biopsy was 3+4. But I had a test called Decipher (much more precise) and came back low risk. Those were done a Jacksonville Mayo along with a bone scan which was negative.
Jacksonville Mayo does not have proton radiations but have an excellent photon radiation treatment. Proton radiation cited less radiation damage to surrounding tissues and organs so I went with UFPTI.
UFPTI is excellent. It is a massive institution with 5 gantry treatment rooms. Each patient is assigned a team (permanent) and treatment gantry based on what you radiologist/oncologist and the Physics team comes up with. My radiologist/oncologist there ordered a PET scan also and it was negative for any cancer outside of prostrate.
I can tell you UFPTI has a massive reception room with coffee and water bar. Very comfortable to wait. When your reservation time comes you are brought back to private changing rooms and bathroom. You do not go back for treatments until your scheduled time (and they will work with you on that) so it is very private. There are 5 different gantry treatment rooms identified by colors and numbers. You will have same color/gantry and techs each time. It got so that after I finished treatment (only bout 10 minutes) would say when they handed me my check in card (you check in using a electronic recording that lets your team know when you are there) I finished each day with, "Same Bat Time, Same Bat Place, Same Bat Gantry." Let me know if you want any additional information. They do have an excellent handout with books and guidance.
I think the hormone treatment is standard option now if risk in intermediate or above. With low risk, and confined to prostrate, I did not have to have it. But even when my first risk was intermediate UFPTI did not recommend hormone treatments as I have heart failure. I also have a ICD/Pacemaker and being able to have the pencil beam proton radiation allowed little risk of radiation interference to ICD/Pacemaker.
Thanks very much for your response and information.
Thanks for sharing this. All of the clinical trials that I have found thus far have involved advanced cases, which is understandable. It is encouraging that the this may lead to help for low/intermediate cases in the near future.
Please post any further updates that you find regarding MRidian.
Did you ever consider brachytherapy? Spoke with someone who had High dose (two treatments) and he had minor and temporary side effects. Also in contact with someone who had good results (4 years out) with low dose brachytherapy. I was leaning to Proton treatment at UF but to hear about a 2 treatment approach with no ADT is certainly appealing since I will have to relocate to JAX for the 8 week treatment time.
I've been back and forth on the options and I would certainly welcome any thoughts about your decision making process.
I just sent an email on 9/1/23 to Viewray requesting that they set up some way of keeping us updated such as a newsletter we could subscribe to. Will keep you informed.
Merwether, I would hate to guide you wrong as not a doctor or knowledgeable about your specific case. I do know that doing your own research with major providers and getting second and even third opinons is what most of us recommend.
I was never offered Brachytherapy at either Mayo Jacksonville or UFPTI. Quite frankly don't know what it is so cannot provide any feedback on that. I do wish I lived close to Phonenix or Rochester as Mayo Clinic there offers the 5 treatments high dose proton therapy. I know a lot of the people on Mayo Clinic Connect had their treatments at Mayo Phoenix and Rochester which to have robust proton radiation treatment plans
Are you in south Florida. I am told there are proton treatment centers there. I also aware there is a private proton provider also located in Jacksonville. I am not sure but heard there was a proton center in Orlando area but not sure about that one. I know Mayo Jacksonville is building a new cancer center that will have proton radiation therapy but that is years away.
What did your oncologist/radiologist suggest? I would get a second opinion even a third to help you with decision making. I know a lot of people come from other countries and states to UFPTI. That have been doing proton radiation treatments there since 2006.
UFPTI gets a lot of referrals from other radiologist/oncologist for other type cancers such as eye because proton pencil beam can control the radiation damage better than Photon. They have a specific radiologist/oncologist that does thoes type treatements. My radiologist/oncologist advised me he does 50% of all prostrate cancer treatments. I think they have about a dozen specialist there with individual teams.
I think UFPTI offers accommodation help. Did you ask for a informatino package from them? In that there is a ton of research, information, specialist, books, and overall information on the insititute.
Was your cancer confined to prostrate? What was you gleason score? I do know UFPTI has a physics department and expert specialist that come up with best treatment based on the tests results and any other information which affects your treatment options. How about PET Scans and bone scans?
I did the pencil beam proton and my plan was 30 treatments which were over a 6 week time period. I am having my first follow up appointment in October with my UFPTI radiologist/oncologist along with my first PSA test since end of treatments. I am keeping my fingers crossed.
Jc76 would like to discuss more about your experience tomorrow if you're available.
Thanks