Living Your Best Life

You go in for your 50 year old physical and blood work. You request that your PSA's be checked. The doctor says you are too young to have it checked, they now check it at 55 years old. But you have been a Shriner for over 20 years and all the "old guys" say to always have it checked. When you go to the phlebotomist, she asked is this everything? Then you add the PSA test. 

The test comes back at 7. PSA's are supposed to be below 4. Now what do you do? Just because you have a PSA over 4 (under 10) does not mean you have prostate cancer. ( https://www.cancer.gov/types/prostate/psa-fact-sheet ) Now there are the decisions. 

A Prostate specialists can do a digit test. But this does not provide evidence of cancer. Then there is the random biopsy. ( https://www.news-medical.net/health/Side-Effects-of-a-TRUS-Biopsy.aspx ) Where the doctor just takes a few samples and see what they find. Well they take  few samples, lets say 12, and they find nothing. Now what? Or they take some samples and find something. Now what? Read about the side effects of the transrectal biopsy, some scary stuff and very random. So, this is a "lucky" test... 

Then there is a MRI. 45 minutes, not moving, in a loud tube. Very bothersome (I've had 5), but worth the time. Here is the catch, lets say that there is prostate cancer, but it hasn't formed a tumor? How is anyone going to see it? Or they do see a tumor, now what? If there is a tumor the next step is a biopsy in an MRI machine (transperineal biopsy). This is the "good one", you are put under and in an MRI machine and the doctor takes samples from the tumor. Very accurate, painless, and no MRI noise (but some muscle soreness. I wonder what position I was in). 

The sample comes back as cancer. Well the good thing is 1) you know where it is 2) you know what it is (gleason score), but you do not know if there is more "lone wolf" cancer cells floating around. Now what?

There are a lot of choices. Cryo ablation, surgery (full removal), Radiation (Proton / Photon), and a few others. 

Well , I've done these all the way to surgery vs radiation (where I am now after two years), yes I did have cryo ablation at the Mayo Clinic Rochester, MN.

After this journey, what I would do if I did it all over again? 1) PSMA PET Scan for Prostate Cancer ( https://radiology.ucsf.edu/psma-pet-scan-for-prostate-cancer ) . This is a new scan that was FDA approved in 2022. I have had one of these (possible first 100 scans) at the Mayo Clinic, Rochester, MN. The person who injected the "stuff" and assisted in the scan was one of the people on the research team. This scan is a must for anyone that might have Prostate Cancer. This is what I should have done first. 

Update 12/12/2022... I had a bone scan last week and they found that the prostate cancer has spread to my ribs  (metastasized), #4 and #10. Now things change a bit. They prescribed me testosterone blocking pills and I have a whole bunch of new appointments at the SCCA / Fred Hutch Seattle. 

Update 2/15/2023... A lot has happened over the last couple months. I received a Lupron shot and was prescribed Abiraterone. As of last week, me testosterone is unmeasurable (below 10). The prostate cancer has stopped growing / spreading. My PSA is 0.67… This is all great stuff.

Now the cancer is starving / dying. At first my energy levels were very low. December and January I needed a lot of sleep and lacked energy. The last couple weeks have been good. The doctor says part of this is due to the cancer not taking resources from my body. 

Cooper (our labradoodle) is doing his part. Every day he wakes me up at 8:00am and we walk our mile. This has been very good for me. It would be very easy to just stay in bed. The gym once or twice a week. Then walk number two around 4:30pm with my beautiful wife. 

We talk next week with radiologist to see when we get to destroy the cancer permanently. 

Update 02/23/2023...   

Have you ever received very great news! Well I did! I was diagnosed with Prostate Cancer in December 2020. Then in May 2022 they found cancer on a few of my ribs. The doctor told me that it is now metastatic (travelling though the body). He informed me there is no cure for metastatic prostate cancer, the goal is to keep me alive for as long as possible (hoping for 20 years). This was not happy news. 

Yesterday (02/22/2023) the doctors were preparing for radiation therapy. They combined all three scans (PMSA, Bone Scan, and MRI) and presented them too many professionals. The doctor told me that my scans were reviewed, analyzed. And discussed by all the best. I was one of the most talked about situations. After much deliberation, they determined that the marks on my ribs are just scar tissue (from years of Rugby) and not cancer. 

This means that I do not have metastatic prostate cancer (no cure), instead I have “regular” prostate cancer which is curable. This was amazing news and the future looks great!

4/20/2023: Things go very quickly sometimes. Here is the latest. My liver is amazing! I did get the “Lindgren Liver” and it handles the Abiraterone great. They say about 1/3 of men’s livers cannot process the drug well enough to continue taking it.

On 3/29/23 I had two (not three) gold markers placed in my prostate. I will spare you the details, but if you really want to know how this is done, let me know…

Also on 3/29/23 I had a short MRI (37 min). This too was an experience. They attempted to place me in the smallest MRI machine I have ever seen (I’ve been in seven). When they were sliding me in, the nurse was pressing down on my chest to make me fit. I was touching all the sides with my arms over my head. I then politely told them that this is not going to work and I have seen bigger machines. They then moved me to one of the most comfortable MRI machines I have ever experienced. 

My first radiation therapy was on April 11, 2023. I will be receiving 28 sessions (today was #8) with my last one on May 18, 2023. They are very quick. Get on the table, CT scan (1 min), then the radiation (4 min), then done. The challenge is the filling of the bladder. My goal (set by the dosimetrist) is 205 ml. This is tough to do. But yesterday was my closest with a 217 ml. They did ask if I know how big my bladder is. I let them know about my experience in Rochester MN with the 3 liters in 7 minutes… They were impressed. 

I’m looking forward to getting this completed. It is not the treatment, but the daily drive downtown (Eastlake) that is not fun. The journey continues and the future looks good. 

July 29, 2023

It’s been awhile since and update. I finished 28 days of radiation on May 18th. After a blood check, my liver numbers were amazing (the best the Dr has seen in years), my red blood cell count was a bit low, but better than the doctors expected. Radiation kills red blood cells. Red blood cells transport oxygen throughout the body. Thus, low red blood cell count makes you tired. It took about 4-5 weeks and my red blood cell count returned to normal and some energy returned. Additionally, it took about 4 weeks for my gut health to return. 

It’s been about nine weeks since radiation. I think all the “feelings” from radiation are gone. Since my prostate is very small (it was never enlarged then some was frozen from Cryo-ablation), the beam is focused on just two markers (there was nowhere to place a third one), and they did 28 treatments (more that average). The cancer is most likely all gone. They still have me on Lupron.

Lupron! This is terrible thing to be taking. The younger you are the more it affects you. This is the testosterone blocker. Having no testosterone is terrible. I am really looking forward to getting off the Lupron.

This month I get all my blood work done, Lupron shot, radiology follow-up, etc… Overall, everything is going better than expected. Another 9-12 months and I should be back to normal.

December 6, 2023 This is the three year anniversary of being diagnosed. It has been a long journey, but the cure is near. 

December 13, 2023 This is the one year anniversary of having zero (0) testosterone. This is something I wish upon no one. I’m the most I have ever weighed with the least amount of muscle mass since I was 16 years old. Low red blood cell count continues. Red blood cell is what moves oxygen around the body. Yup, I’m tired. 

April 10, 2024 About 4 weeks left until I get off the meds that are holding back my testosterone production. I am the most tired and sore (legs) I’ve ever been. I cannot wait. It has been a long journey, but the future looks great!

December 5, 2024

It has been four years since I was diagnosed. I’ve been off the testosterone blocker for six months. My T is now just over 80. I feel much better. My red blood cell count is in the normal range with the oxygen in my blood moving around great. I’ the most I’ve ever weighed with the least amount of muscle mass in my life. But the doctors are saying my metabolism will triple in the near future and the weight will come off. My energy levels are better, the hot flashes have ended, and my PSA is undetectable. The future looks great!

I am not a doctor, I am not giving medical advice, I am just sharing my story and making myself available for someone to talk to. You medical care is your decision. I am not selling anything. I am not endorsing anything. I am not getting paid for anything on this site. I am a guy that is dealing with prostate cancer and want to share mine and others experiences. I have talked with over 40 men that have had or currently have prostate cancer. They will all remain anonymous and so will you if we chat.