1. < Prostate Cancer

First Appointment at Mayo Clinic in Arizona

Posted by themurfs @themurfs, Mar 3 5:28pm

My husband called to schedule an appointment for a second opinion for his prostate cancer treatment. We sent in all his pathology and scan results. When MAYO called back my husband was given an appointment with a Urologist at Mayo. Can anyone help us with what we can expect for this first appointment? We had really hoped we would be scheduled with a Radiology Oncologist so we could discuss treatment options. It seems like we are having to start back at the beginning with having to see a urologist. We live in Oregon and will be traveling out of town, obviously, so we want to make certain booking flights, and a hotel room will be worth this first appointment. We would really like some feed back on this as we navigate what to do. Thank you!

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dandl48 Dave | @dandl48 | May 10 1:04pm
In reply to @tuckerp "Mayo does not accept Medicare advantage plans." + (show)
@tuckerp

Mayo does not accept Medicare advantage plans.

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tuckerp It's my understanding that it is only Mayo AZ won't accept an Advantage plan. Check with MN and FL to see what plans they do accept.

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dandl48 Dave | @dandl48 | May 10 1:10pm
In reply to @jrhamp "Proton radiation 2010 at Loma Linda Hospital..one of the first to treat prostate cancer with proton..." + (show)
@jrhamp

Proton radiation 2010 at Loma Linda Hospital..one of the first to treat prostate cancer with proton radiation. From what I have learned over the years, the issue of radiation or surgery depends on the level of cancer. I had Gleason 3 plus 3 and PSA: 6.47 I notice the PSA increased 2 points over one year; biopsy and confirmation of localized slow growth prostate cancer. Even today, many physicans are not well informed at to proton radiaiton thereapy, so "you" must do your homework and ask the correct questions which means "you" must be educated on all metrics of this disease. Always get a sccond opinion..even perhaps a third. Many insitutions who provide proton radiation like Mayo do not accept Medicare Advantage. I have TriCare for Life which paid the entire bill which was nearly $100K. This did ot include the rental car and accommodation for the 2 1/2 months at Loma Linda. Now the treatment is much shorter..and that depends on the gravity of the cancer. Lastly, each morning, I would meet with various men who were awaitng their turn..breif convesations would commence. I recall that over 60% of the clients were physicans. This validated my decision to forgo surgery and elect proton radiation as a life decision. Again, measure all the metrics, obtain different opinion and give some weight to the comments on this site. Cheers!

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jrhamp (@jrhamp great post but I need to correct one thing; Mayo AZ is the only one that won't accept an Advantage plan. Contact Mayo MN and Mayo FL to see what Advantage plans they accept.

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1 reply
tuckerp | @tuckerp | May 10 6:22pm
In reply to @themurfs "Thank you so much for your candid answer. My husband finally made his decision to have..." + (show)
@themurfs

Thank you so much for your candid answer. My husband finally made his decision to have surgery and pretty much came to the same conclusion you did. His surgery is on June 5 and we will be traveling to Mayo on May 25. I have to say we both have a peace about his decision, but there is definitely so much unknown and it is still scary. I'm glad that you are doing well and it does give us hope. Again, thank you for your response, we really appreciate it!

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I considered my myself younger. (68). No other issues. Went for a routine check due to frequency of urination. Agreed to biopsy due to an elongated prostate. 1 out 12 samples cancer. my PSA was 1.2. (normal). It took me 15 sec to say surgery. Dr tried to convince me to do ultrasound(not Mayo) or nothing at all. I felt like this was the only option to possibly get rid of it. Sort of like a total breast removal. Everything else left the possibility. The Dr had a 85% success on incontinence and impotence.(his data) I thought. good enough. Little over 4 yrs all PSA < .1 and pet scan was clear. I am both incontinent and impotent. I can live with both. (not easy mentally) but I appear to be cancer free. Would I make the same decision again. Probably.

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tuckerp | @tuckerp | May 10 6:46pm
In reply to @dandl48 "jrhamp (@jrhamp great post but I need to correct one thing; Mayo AZ is the only..." + (show)
@dandl48

jrhamp (@jrhamp great post but I need to correct one thing; Mayo AZ is the only one that won't accept an Advantage plan. Contact Mayo MN and Mayo FL to see what Advantage plans they accept.

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Yes. probably true on advantage plans. I am located in Phoenix and the original message involved the PHX Mayo. They do not take advantage plans. I am on regular Medicare so no issues for me. As you suggest always best to check.

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themurfs | @themurfs | May 10 6:57pm
In reply to @tuckerp "I considered my myself younger. (68). No other issues. Went for a routine check due to..." + (show)
@tuckerp

I considered my myself younger. (68). No other issues. Went for a routine check due to frequency of urination. Agreed to biopsy due to an elongated prostate. 1 out 12 samples cancer. my PSA was 1.2. (normal). It took me 15 sec to say surgery. Dr tried to convince me to do ultrasound(not Mayo) or nothing at all. I felt like this was the only option to possibly get rid of it. Sort of like a total breast removal. Everything else left the possibility. The Dr had a 85% success on incontinence and impotence.(his data) I thought. good enough. Little over 4 yrs all PSA < .1 and pet scan was clear. I am both incontinent and impotent. I can live with both. (not easy mentally) but I appear to be cancer free. Would I make the same decision again. Probably.

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I am glad you feel good about your decision. Did you feel confident in your surgeon? Had he had many RP surgeries under his belt? Does he give any explanation as to why you are among the 15% that are incontinent and impotent? It's always frightening to put your quality of life into another's hands.

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1 reply
tuckerp | @tuckerp | May 10 7:19pm
In reply to @themurfs "I am glad you feel good about your decision. Did you feel confident in your surgeon?..." + (show)
@themurfs

I am glad you feel good about your decision. Did you feel confident in your surgeon? Had he had many RP surgeries under his belt? Does he give any explanation as to why you are among the 15% that are incontinent and impotent? It's always frightening to put your quality of life into another's hands.

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Yes. At the time Mayo AZ would not take any medicare. So I went with reviews. I used Urological Surgeons of AZ. I went for the 1 month checkup and I have not been back. No particularly bad reason. It was the middle of Covid and I did not see the sense. Last fall I went to Mayo. I have been very pleased. I have some decisions to make on future plans.

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Jerry | @jerryegge | May 12 7:53am

Glad you felt comfortable with your decision. I’m wondering why you were treated? A Gleason score of 6 doesn’t indicate you have cancer and a PSA is just a check engine light. Anyways, glad you’re doing well.

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1 reply
tuckerp | @tuckerp | May 12 8:39am
In reply to @jerryegge "Glad you felt comfortable with your decision. I’m wondering why you were treated? A Gleason score..." + (show)
@jerryegge

Glad you felt comfortable with your decision. I’m wondering why you were treated? A Gleason score of 6 doesn’t indicate you have cancer and a PSA is just a check engine light. Anyways, glad you’re doing well.

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I cannot say I am comfortable with the decision. I feel better now after 4 years knowing I might have caught it early and its gone. It was just a routine biopsy to rule out anything due to my urgency to pee. I had to talk the Dr. into it. I just need to do the right thing now.

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