Living with Prostate Cancer: Meet others & introduce yourself

Has anyone had experience with MRI LINAC?
Thx
Victor

Hi Lee, you have successfully joined the Prostate Cancer support group discussions here.

You can also email Dr. Vetter at rvetter@mayo.edu to be added to the monthly invite for the Zoom prostate cancer meetings.

Lee, can you share a bit more about yourself? When were you diagnosed with prostate cancer? Have you had treatment?

I'll keep gabapentin in mind for hormone therapy...interesting. I have been on it for about 6 months for neuropathy and it is working, sort of. better than it was.
My prostate cancer was discovered about 2 months ago and is staged at t2c. I had an MRI before biopsies; they found a PI-RDS 5 lesion in the MRI and 12 of 20 cores were positive 3+4. There were no indications outside the prostate so I selected radiation. My radiologist sent my biopsies to a genetics for to check for 'high risk' of spreading. I said I would have to be convinced to do the hormone thing and should have that info back next week. We'll see. Radiation will likely start in about 10 days; have had the simulation appointment this past week.

My husband was just diagnosed 1 week ago with stage 4 advanced prostrate cancer. His PSA was 225, and the cancer has spread to his spine, ribs, pelvis and lymph nodes. I have sent in a referral to Mayo along with his test results. My question is typically how long does it take to get an appointment at Mayo?

Check out todays Event Update (April 11, 2023) that refers to a Prostate Cancer Support Group that meets on the 2nd Wednesday of each month with a guest speaker from noon to 1:30 Central Time.

Good morning. Is there a group site or a regular zoom meeting. I'd like to join.

I agree with the other comments. Definitely get the biopsy done (not just lesion area but entire prostate, especially peripheral regions). If you catch prostate cancer early, side effects can be minimal for the rest of your life. If you let prostate cancer develop too long and then address it, side effects will be significant for the rest of your life.

FYI - Just had a friend go through same situation and biopsies came back negative.

Good luck and I pray the biopsy come back negative!!

Jim

Hello, Is there a site that list Drs at Mayo that do Robotic Prostechtomies?
And How many they have done?
Thks,
Doug

Any one else dealing with multiple diseases I am a recovering alcoholic//addict 20 + Years clean and sober being treated for stage 4 metastatic prostate cancer , Parkinson’s disease, depression and I have anxiety With both shoulders having had surgery on them one really painful now i do my best for one moment at a time in one day at a time

I am Tommy from mass currently living with stage 4 prostate cancer being treated at Dana Farber My journey has been crazy dealing with this In 2015 I had my yearly Physical exam, my regular PCP had another Dr covering for him During the exam I asked if he was going to do a physical exam to check my prostate because my regular PCP always die He answered that he wasn’t because my PSA were really good and also his fingers were to short Next year. 2016 my regular PCP who always did a physical exam did feel something in my prostate that concerned him He told Me my PSA were great but he felt I should definitely have a biopsy done ASAP The oncologist/surgeon did the biopsy I was discharged went home and had started to have blood flow out ofmy rectum I went immediately back was admitted and I had Tampex inserted in my rectum and removed as needed till the bleeding had stopped At that time the O/S informed me that my biopsy came back with a Gleason score of 3+4 and his belief was that the cancer was just in the prostate because of the very low PSA score I consulted with the surgeon and a radiologist and decided to have the prostate removed based on the information I received about the recovery process I was a self employed contractor who at the time wore all the hats and it would have. financially ruined me if I could not get back to work right away in a high functioning condition After the surgery which was done microscopically The Dr said he did not see any cancer and that he got it all when he removed the prostate My PSA we’re great till they started to rise in 2020 I elected to end my care at Lahey and get treatment at Dana Farber I was started on Hormone therapy then did 6 weeks of radiation This lowered my PSA for a while after during this time I was also dealing with Parkinson’s disease that was not being treated because I was ghosted by my original PCP at Lahey and a Nurse Practitioner at Brigham and Women s who said it was a medication I was taking My prescribing Dr for that medication said that I was on the very minimum dosage and at that dosage could not cause the tremors in my left arm and side with the problems I was having with my balance I stopped taking the medication at the NP advise and when 6 months + had passed and was finished my other treatment I was prescribed Cordoba Levodopa I was told that if it stopped the tremors and worked on my balance I definitely had PD which it did When I was going through the radiation and hormone therapy and untreated PD it was torture every day Then less than a year my PSa started going up I was told by my oncologist at Dana I should start Hormone Therapy right Away then do chemotherapy I asked how long would I live if I elected to not do the treatment he said a tear maybe two and if I did the treatment 4-5 I decided I would rather live maybe 2?good years then go through what I thought would be hell for 4 or 5 I immediately started to work on getting my affairs in order But soon realized I would not ever have enough time I elected to do do the Chemotherapy which I just finished and the hormone therapy that I will be doing from now on with a new team at Dana Farber because my PD was being treated this time along with the Chemotherapy And Hormone Therapy I had by far less of a hard time going through it Currently My psa are good and I am being treated for my PD by a neurologist at the movement disorder clinic at Mass General I have had a real hard time with most of medical drs over the last 6 + years getting tests I wanted and needed based on advice I gotten from people I know that have gone through this Case in point I had a problem with my left eye that I thought was a floater but after a few examinations at Ma eye and ear and doing my own research suspected it was a tumor behind my pupil The specialist I finally saw concurred with me that it probably was She asked me if I had a pet scan done and if I had and any cancer was showing in it It would confirm that it was a tumor and I would be scheduled right away for proton radiation therapy During this time my first oncologist who gave me pushback on having a pet scan done when I had asked for one way before and during this because he wanted to watch my psa which had gone from around .45 to 3.00 in a matter of months I ended up demanding he order a pet scan immediately so I could schedule the proton radiation on my eye I convinced my ophthalmologist melanoma specialist to schedule the radiation consultation and appointment ASAP This was a Thursday told her we could always cancel it if I did not get the pet scan or and or confirmation of cancer in other parts of my body We made the appointment for the following Wednesday for the consult and Thursday and Friday for treatments I got pet scan Tuesday morning cancer was detected in 3 places and I kept my appointment for the consultation and the radiation That long time period from initial examination to treatment left me with a more damaged left eye that got progressively worse I believe because of a drs resistance to ordering a pet scan because to get insurance to approve payment for it involved the doctor doing paperwork he was trying to avoid I understand the medical system is in crisis because of the pandemic and it’s aftermath with medical personnel leaving because of burnout and being under staffed But tell me how hospitals that cannot properly take care of the patients they have now are the same ones spending millions on TV Radio Print ETC marketing to and for new patients