Which Mayo Clinic is best for Prostate Cancer treatment and wait times
Hello, my husband has been recently diagnosed with Prostate Cancer (Had a 5.8 PSA in February, PC confirmed through MRI and biopsy in May: Gleason 8, Grade 4). We live in Alaska and are trying to find an excellent center for confirmation of diagnosis and treatment. He has been a patient of Mayo AZ but we are wondering which Mayo location is best for prostate cancer treatments and what the likely wait times are for getting the initial appt and then treatment. We feel like we have wasted valuable time working our way through local and regional medical care this winter/spring so are anxious to get seen. Thank you.
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I just confirmed that about 90% of PCa patients that receive proton beam therapy (PBT) at Mayo in Rochester have the five treatment regimen. Apparently, Mayo in Scottsdale is now treating more PCa patients receiving PBT with the five treatment regimen. Of course, individual patient circumstances and providers make a huge difference in the therapy received.
5 regime? Be more specific please.
@round5 5 Treatment Regiment refers to getting 5 radiation treatments usually over the course of 10 days. They give you the same total radiation as they would if you received it in 30+ doses. They have found that there have been no problems with giving the higher dose over a shorter period of time. I might be wrong but they haven't gotten 10 years' worth of experience as of yet. I had the SBRT 5 treatments in September of 2020. PSA still <.01
OK, trying to be more specific: Many locations administering Proton Beam Treatment (PBT) have used a treatment regime of five treatments per week for five weeks for a total of ~25 treatments. Three places where that has been true (not sure today) were Mayo AZ, Seattle Cancer Care Alliance, Loma Linda Hospital, and California Protons (San Diego). Mayo in Rochester/MN uses a five treatment regime for 90% of their patients with localized prostate cancer – so five PBT treatment sessions spread over two weeks – so something like M,W,F, M, W. Its my impression (bears verification) that the total dosage for 25 or for 5 treatments is the same. My own treatment at Mayo Rochester was the five treatment regime. I had some urethra irritation after the second treatment for which I started and continue Flomax and I may have some bowel irritation that persists, but for which I would say that I am asymptomatic.
If the cost of treatment is the same (I don't know) then the incidental costs of being away from home somewhere maybe a deciding factor for some patients on not choosing a 25 treatment option and choosing a different therapy without realizing that PBT is administered in some locations according to a different approach.
All that said, patients and the nature of their disease are different so different therapies may be dictated by the nature of their prostate cancer, and/or other illnesses or state of health.
Hope that helps
@voc, how are you doing? Any update on your husband's appointments and/or treatment options?
My cancer has changed from intermediate favorable to aggressive and invasive. Prior to a total robotic assisted prostatectomy genetic testing revealed that I am BRCA2 positive, which apparently is why the cancer is so aggressive. I need to change my provider to a facility that has a team approach and IS FAMILIAR WITH THIS GENE MUTATION. Path reports and a PMSA PET/CT shows the cancer is now in a lymphnode, Time is of the essence!
Welcome @maryvilleman, I moved you message to this existing discussion where @voc asked a similar question. See
– Which Mayo Clinic is best for Prostate Cancer treatment and wait times https://connect.mayoclinic.org/discussion/which-mayo-clinic-is-best-for-prostate-cancer-treatment-and-wait-times/
I'm tagging a handful of members who have been to Mayo Clinic at various locations like @dandl48 @jimcinak @jimplwonard2021 @jerryegge @kayak461 @dpcarriere @hammer101 @keismom2 @bobvan @jic811 @waynen @curious10 and many others.
With respect to having prostate cancer with the BRCA gene, @bens1 may have some insight.
I was hoping someone would assure me that having this BRCA gene mutation would help me get into treatment with a specialist sooner, My progression has been increasing in the last 6 months and I need aggressive managment.
So, my comments would be to work on a consult at Mayo, Rochester, MN. The size of the Mayo Rochester facility means there are more physicians (more patients too). Other Mayo facilities are good, but not as big and likely will take longer to get appointments and to move along. You would need to submit as much data ahead of time as possible (say Blood test results, XRAY/MRI/CAT/PET scans – submit the raw data (like on DVD), maybe the radiologist reports, that BRAC2 report, etc). Typically Mayo starts with one appointment and then schedules other appointments pronto. So, you might get in the door faster with a PA being the first provider, rather than an MD or the most knowledgeable appropriate provider. My experience – told it would take a long time to get an appointment and even longer to get a biopsy. I called on a Thursday or Friday and they asked if I would see a PA – "I said sure" – appointment was Monday at 10AM. PA looked at my records (my MRI had been reviewed by a Mayo radiologist) and said "You need a biopsy; how about Wed at 10:00." I said: "Great!"
So, things can move along pretty quickly.
Treatment might take longer. I would assume that based on what you've shared that you are on ADT (Androgen Deprivation Therapy) already or should be (my uniformed opinion). If not yet, Mayo docs may want that as first firewall. Then maybe talk about which therapy is best for your situation.
I can't answer definitively on all Mayo facilities, but I know that in Rochester there are five treatment rooms for Proton Therapy. I would guess less at Scottsdale the PBT facility is smaller. Also FWIW when I got PBT (Feb 2020) the protocol for my prostate cancer was five treatment sessions spread over two weeks. In Scottsdale (at that time they were still using the (older) protocol of five day a week treatment for five weeks. I believe that has changed for some providers in Scottsdale, now. Longer treatment might mean less incidental tissue irritation but if it makes it more expensive (maybe not at Mayo) or more hotel expenses and days away aren't' doable than that makes a difference.
Hope that helps.
@maryvilleman I think @jimcinak covered it very well. Rochester is absolutely huge compared with Scottsdale. Rochester is also very big into research and I would think they would be more up on latest treatment options. Not up on BRCA gene at all. Had SBRT Proton beam going on w. T years and still my PSA is <.01. I go to Scottsdale for Barrett's esophagus procedures while my Radiation Oncologist monitors my PSA in Rochester. If I would need surgery because of increasing PSA #'s I would probably go back to Rochester because of the team support they give you. Most likely you will need to be on ADT before either radiation or surgery, are you on it already? Good luck