Prostate Cancer- getting help-questions answered

My radiation oncologist dr Julia Silerenko saved my life

I'm from out of state but get my prostate cancer treatment in Rochester. Are there any remote (Zoom) groups for this for fellow out of state Mayo prostate cancer fellows?

Hi @tnola123th, I'm really sorry to hear that options appear to be limited or limiting for you and that you have lost confidence in the care that you're getting. This is your life and understandably you're upset and shouting. Might it be possible for you to get a second opinion at a large cancer center of excellence?

DD, I don't see a Zoom support group specifically for prostate cancer listed in the Events. Many inperson support groups at Mayo moved to Zoom over the past couple of years. @muradangie might know more.

@dd2312 & @colleenyoung, I do not see any Mayo Clinic virtual prostate support groups being offered at any of the other Mayo Clinic sites.

If you are in Rochester, our in-person support group is actually resuming in Rochester on the second Wednesday of each month. It resumes on Wednesday, September 14th @ 12pm CDT in the Baldwin First Floor Conference Room, Room 1-507, Baldwin Building. Also, there is a group called Us TOO! (www.ustoo.org) that provides prostate cancer education and support. If you click on the "Get Support" at the top of the page you will find online support groups and mentoring. I hope this helps.

got one yesterday from Johns Hopkins...feel better but still resigned to the emotion of walking the last mile to the gas chanber.....tried Mayo...fell through cracks....no bad feelings.....just sadness of not getting best because of cost....but it has always been so....right? we accept our fates when there is no other (accessable) alternative-

...kind of a mess everywhere..

..we get a bonus at my speciality pracrice for every 2,500 new patients a year....but exisiting patients now cannot schedule 3 mo f/ups until 5 or 5 mos out ....THEY are mad...

It would help me, at least, to know how old you are. Also, are you on Medicaid or Medicare?

"Üniversity Based Doctors" - Here in Connecticut Yale/New Haven has been gobbling up independent doctors' offices like a kid binging on Halloween candy. A good thing or not? Very difficult to say, at least for a non-medical person like me.

My prostate cancer was seemingly entirely in my prostate. The urologist I was seeing was hell-bent on giving me robotic assisted surgery. I told him to slow down because I needed to satisfy myself that I understood the basic facts between surgery and radiation. After a week of trying to make sense of internet information I went with the surgery. (And, yes, the idea of getting a radioactive cancer in my a...hole was a large factor!)

I am just about 70 years old. I'm living with 4 cats and a crack-addicted girlfriend. We started living together in 2005, about 10 years before she began hitting the glass pipe. She is 15 years younger than me. She's also in and out of the local hospitals emergency room a couple times a year. (3 months ago she disappeared for a few days. Then I got a call from her ... she had left our condo when I fell asleep. She claims she was sober at the time and going to the liquor store. She blacked out and hit a telephone pole. Her car rolled over a few times, according to the firemen who had to cut her out of the car. She was in the Continuing Care Unit for a week. Physically she had detoxed while in the hospital, but she has given up on life and went right back to a local crack house.

Anyway, I believe that I will be dead before I'm 80. I am trying to live with that in mind. I need to find homes for my 4 rescue cats before I croak. (until then I will still be their "daddy".) I WAS going to leave my girlfriend the condo, and perhaps marry her so that she could get my meager social security monthly payments, but NOT if it will go down the tubes because of her addiction).

Well, as you can see, a large part of my post surgical problems stem from my age. Which is why I ask you what your age is.

@budisnothome I'd be interested if you hear about one. I'm from Brooking Oregon and had a SBRT 2 years ago this month in Rochester.
Dave

@cilong, having a seizure after 40 years of being seizure-free must've been frightening for both you and your husband. You are obviously no stranger to navigating chronic conditions and I encourage you to continue to do your own research. Patients and family caregivers are equal partners in their care (and they've got skin in the game so to speak.)

Did your husband's care team stop abirateron until they figure out what is going on? What other treatment options, if any, did they offer? Has he had the MRI and EEG to further investigate the cause of the seizure?

I will email Richard and ask.