Which Mayo Clinic is best for Prostate Cancer treatment and wait times

Posted by voc @voc, May 30, 2022

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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My experience with the Mayo Clinic in Jacksonville took place last year. I do not have have cancer, but I did require prostate surgery due to having a prostate that was enlarged and growing into my bladder. The type of surgery I needed was only performed by two surgeons in Florida, one of which was at the Mayo in Jacksonville. Once I was ready to find out how I could get into the Mayo to see this Doctor, I went online with the Mayo and reached out to ask for an appointment. I gave them the background to my condition and asked if I could see Dr. Dora. Within a few days, the Mayo responded and asked for records, images, etc. I submitted via email the answers to their questions, I mailed them MRI images of the prostate. Within a week, I had an appointment to see Dr. Dora. It took about 4 weeks to see him…..and then based on that appointment, my surgery was scheduled for two months after that! Could not be more satisfied with the results of the entire Mayo Clinic experience from beginning to end. I have never been to the Rochester facility, or the Arizona facility so I cannot comment on them at all. I have to believe that the three Mayo Clinic’s all share practices and procedures. I don’t think one could do any better than receiving care from any of the three! I was so happy to have been provided care from the Jacksonville Mayo. I believe I would have been equally happy had it been either of the other two clinics. One may be able to get to you sooner than the other! One may simply be more convenient than the other two. Because your case is much more urgent than my own, maybe you consider reaching out to all three Mayo Clinic’s to see if access to one might be sooner than the other? I might add that the Mayo in Jacksonville partners with an insight hotel which makes it much easier if you’re visiting from some distance, and the rate is a reduced rate from the advertised rate if you’re having a procedure there. There is shuttle service every 15 minutes from the hotel to the hospital just a few hundred yards away. Good luck friend!

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@maryvilleman

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!

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Maryvilleman, I would highly recommend Mayo-Rochester. In early September 2022, I was told that my PSA was increasing at a high rate. I called Mayo-Rochester, and within three weeks I completed my initial visit, MRI, and biopsy. Six weeks later, I had a radical prostatectomy. Incredible doctors and support staff, I can't imagine going through this without the level of support Mayo provided.

Best of luck with your decision,

Jim

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Wondering if Rochester MAYO provides destination phase IV Prostate Cancer services? Some EDS & MEDS cancer centers have weekend programs.

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@dandl48

@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

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Hi Maryvilleman, I had my treatment for prostrate cancer at Mayo Phoenix. I'm not familiar with Rochester, but Phoenix has a wing of the hospital dedicated to radiation treatment of cancer. The Proton Beam treatment center has 5 bays as well. It was built in 2015 and has the latest equipment. My selection of Mayo Phoenix was based on several factors. The first was type of treatment. I chose Proton Beam Therapy, which I believe all Mayo Hospitals offer. Second was living accommodations. My treatment was 4 years ago and then the treatment was between 4 and 9 weeks. The cancer team decided the length based on condition of patient and how well they can withstand the treatment. I was lucky to have 4 weeks but met men who had 9. Fortunately for us, we had a place to live in Phoenix area, which is why we chose Phoenix. They also have appartments available next to the hospital for people to live in at no cost while receiving treatment.
Now for the access to services. When I decided on Phoenix, I contacted Mayo and they asked me forward my biopsy information to them. My Gleason was 4+4 In 5 days I was contacted with information that they accepted me. I had first appointment in a week. Since my local urologist hadn't scheduled any scans to determine if the cancer was contained only in the prostrate, they scheduled a series of scans within 3 days and then we met 2 days later and my radiation oncologist said the team had reviewed my results and made the recommendation that I have 4 weeks of radiation and 18 months of ADT treatment. We went through all side effects and then the research on why the ADT was important. It increased my chances of survival from the cancer from 65% to 85%. We agreed to proceed with both treatments and I had my first Lupron shot that day.
Seven weeks later I started the radiation. It's been 4 years and my PSA is still negligible.
The staff at Mayo was fantastic, from the guy who emptied the trash to the oncologist. They were all welcoming and doctors and nurses spent more time with us then we were used to from medical staff. Our first visit lasted an hour and the nurse and doctor didn't try to rush us and were interested in us as people. It seems to be the culture of Mayo. They also have integrated medicine office in the cancer center with classes and support staff. There also is grand piano in the center lobby where anyone can play. Often we sat and listened to some beautiful music.
Finally, you asked about the Braca gene issue. After my treatment,a staff person asked me to participate in a DNA research project and they tested my DNA and didn't find any suspicious genes. However, I have 2 other brothers who had prostrate cancer and I was interested in any hereditary links. Mayo has a division that deals with DNA implications of cancer and have specialist you can talk to. It's available to you regardless which treatment center you use. They determined that our cancers were environmentally caused.
My guess is that you could get comparable treatment at any center.

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@proftom2

Wondering if Rochester MAYO provides destination phase IV Prostate Cancer services? Some EDS & MEDS cancer centers have weekend programs.

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Tom, Mayo Clinic Rochester is Destination Medical Center (DMC) https://www.mayoclinic.org/about-mayo-clinic/destination-medical-center-dmc

Can you tell me what is meant by "destination phase IV Prostate Cancer services"? I'm unfamiliar with the term.

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I was diagnosed and started my Prostate Cancer treatment at Mayo MN.. an excellent choice..

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@colleenyoung

@voc, how are you doing? Any update on your husband's appointments and/or treatment options?

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We sent the files to Duke in Durham, NC but the clinic was closed Monday in observance of the MLK holiday. Here's praying that we make progress today.

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@jimcinak

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.

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My surgeon has not put me on ADT yet and the PSMA and subsequent cystogram shows a urinoma from a bladder leak and now at least one lymph node is involved. Have lost confidence in this urologist

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@kayak461

My experience with the Mayo Clinic in Jacksonville took place last year. I do not have have cancer, but I did require prostate surgery due to having a prostate that was enlarged and growing into my bladder. The type of surgery I needed was only performed by two surgeons in Florida, one of which was at the Mayo in Jacksonville. Once I was ready to find out how I could get into the Mayo to see this Doctor, I went online with the Mayo and reached out to ask for an appointment. I gave them the background to my condition and asked if I could see Dr. Dora. Within a few days, the Mayo responded and asked for records, images, etc. I submitted via email the answers to their questions, I mailed them MRI images of the prostate. Within a week, I had an appointment to see Dr. Dora. It took about 4 weeks to see him…..and then based on that appointment, my surgery was scheduled for two months after that! Could not be more satisfied with the results of the entire Mayo Clinic experience from beginning to end. I have never been to the Rochester facility, or the Arizona facility so I cannot comment on them at all. I have to believe that the three Mayo Clinic’s all share practices and procedures. I don’t think one could do any better than receiving care from any of the three! I was so happy to have been provided care from the Jacksonville Mayo. I believe I would have been equally happy had it been either of the other two clinics. One may be able to get to you sooner than the other! One may simply be more convenient than the other two. Because your case is much more urgent than my own, maybe you consider reaching out to all three Mayo Clinic’s to see if access to one might be sooner than the other? I might add that the Mayo in Jacksonville partners with an insight hotel which makes it much easier if you’re visiting from some distance, and the rate is a reduced rate from the advertised rate if you’re having a procedure there. There is shuttle service every 15 minutes from the hotel to the hospital just a few hundred yards away. Good luck friend!

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PSA of 12 in late August 2022. Biopsy showed Gleason 6 intermediate risk prostate cancer mid September. Reviewed treatment options via Dr. Walsh's book, Surviving Prostate Cancer. Contacted Mayo Clinic Rochester late September, video appointment late October, treatment began 13 December. My situation was not urgent and I suspect Rochester could and would move even more quickly had it been. Entire process from submission of tests, biopsy, MRI... was super easy. Recommend Mayo Rochester.

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