Living with Prostate Cancer: Meet others & introduce yourself

Hi, my name is Dave and I'm new to this group but have been on the Barrett's Esophagus page for a few years. I live in an area of Oregon that only has 1 Urologist in 70+ square miles and he should have retired years ago. I'm might be jumping the gun here since I've yet to get a Gleason score since my previous MD who did the biopsy took only 8 cores, none came back positive but all showed HGPIN. Following the Mayo MD's recommendations to my questions on the video chat recently and since my PSA # is 17 and my Free PSA # is 6 I got a contrast MRI which showed a Lesion of 2.2 x 1.1 x 1.5 cm. In the Radiological report, it states the PI-RADS v2 Assessment Category: 5 Very high (clinically significant cancer is highly likely to be present). My new Urologist (70 miles away) has since scheduled me for a Fusion (MRI Guided) biopsy for next Wednesday. The new practice has a # of Urologists but they primarily operate and if I choose an operation I would rather go to large Medical Center; but my question for the group is what happens if I do travel and complications happen after the operation would I have to return to the operating hospital which would be at least a 7 hr trip? Who has traveled to get an operation many miles and what did you do for followup? Because of this I'm leaning toward one of the radiation cures since from what I can tell there are much fewer after treatment complications. Thoughts anyone. Thanks in advance, one stressed out Dave

Hi, my name is Dave and I'm new to this group but have been on the Barrett's Esophagus page for a few years. I live in an area of Oregon that only has 1 Urologist in 70+ square miles and he should have retired years ago. I'm might be jumping the gun here since I've yet to get a Gleason score since my previous MD who did the biopsy took only 8 cores, none came back positive but all showed HGPIN. Following the Mayo MD's recommendations to my questions on the video chat recently and since my PSA # is 17 and my Free PSA # is 6 I got a contrast MRI which showed a Lesion of 2.2 x 1.1 x 1.5 cm. In the Radiological report, it states the PI-RADS v2 Assessment Category: 5 Very high (clinically significant cancer is highly likely to be present). My new Urologist (70 miles away) has since scheduled me for a Fusion (MRI Guided) biopsy for next Wednesday. The new practice has a # of Urologists but they primarily operate and if I choose an operation I would rather go to large Medical Center; but my question for the group is what happens if I do travel and complications happen after the operation would I have to return to the operating hospital which would be at least a 7 hr trip? Who has traveled to get an operation many miles and what did you do for followup? Because of this I'm leaning toward one of the radiation cures since from what I can tell there are much fewer after treatment complications. Thoughts anyone. Thanks in advance, one stressed out Dave

Hi Dave, I'm also from Oregon, Salem area, and my 8 core biopsy did show a sample with Gleason score of 8. Based on readings, I also determined that being treated at a cancer center would give best chance of success. In Oregon that would be OHSU, but they didn't perform Proton beam radiation, my choice. So, I chose Phoenix Mayo Clinic. We happen to have a winter home there, but they have apartments available for no cost to patients. We met some patients who stayed there and seemed a good option for people from out of town. Most centers will help find housing. I checked with Seattle and Loma Linda who had staff to help with housing. Radiation treatments can take up to 9 weeks so housing is necessary. My treatment was 4 weeks and Mayo has done some trials with 5 treatments over two weeks that show good results. Number of treatments depends on your diagnosis. Those who I met with longer treatments had the cancer spread outside the prostrate. They have a team that reviews your data and recommends treatment option.

I am from Canada and travelled to the USA for Sn alternate treatment Focal Laser Ablation bybthe Sperling Clinic. I did not like the proposed treatments surgery or radiation. No treatment is a 100% cure. My focus was my quality of life. I am 72 and if I have 10 good years, I am happy. With surgery or radiation there is no guarantee however in my view the risks were greater than the reward. It is an individual. Choice all my decisions were based on quality of life after treatment. I also did research on Rick Simpson Oil (marijuana oil) “Phoenix Tears “ strain and followed his 90 protocol. It was not difficult and it has made me feel good. I also used Metformin ( you can research it). It’s a very safe inexpensive diabetic drug which recent studies showed success with cancer. I am presently taking Lupron my PSA is now .2

@waynen Thanks for the response! As I said in a previous post, my MRI Guided (Fusion) Biopsy is scheduled for 11/20 and I hope to have a clearer idea to what is available to me on 12/4. A question for you; will you be returning to Phoenix for follow-ups after the Proton Beam radiation or will you be using your Urologist in the Salem area? My first choice would be to go the Mayo Rochester since I'm familiar with them due to my experience with them with my Barrett's Esophagus, but if the procedure/operation requires multiple followups in Rochester that wouldn't work due to the cost.
Thanks again, dandl48 Dave

Hi, Day 1 for me post biopsy result...with cancer diagnosis of Gleason 6 at age 52. I am reading about how 6 is low risk, but that 50% of Gleason 6s turn out to be higher. I am looking for information on Molecular Tests, Genetics, or other things I can do to avoid risk of it being more aggressive or metastasizing if I choose "Active Surveillance".

Yes, it is. I had to wait over a week to get biopsy results. Longest week of my life. Things moved fast after Mayo accepted me. Met with my doctor less than a week later.

Colleen asked about side effects. The hormone therapy does result in hot flashes, mine weren't as bad as some others. It also weakens bones, requiring taking calcium. It can increase breast size, but mine didn't change much. It also affects sexual ability. Fatigue was probably the most noticeable.

For radiation, the urethea is going to get hit. It will affect urination. Pain when urinating and urgency are the two most serious issues. They reduced the effects with Aleve and Flomax. The side effects from radiation are gone now.

Long term, all side effects should be gone. One advantage of Proton Beam Therapy is that it limits tissue damage, so only the prostrate got hit with the beam. The good cells will regenerate, but not the cancerous.

Also, during treatment I was able to continue normal activity, which is what they encourage.