I have decided to share this with the group because yesterday a guy shared his fear. In no way should you take any of this as a suggestion for treatment or refusal of treatment. I was diagnosed with Pca Gleason 3+3 July 13 2000 ar the age of 49. When the Dr. gave me the results I started sweating profusely and got light headed and nearly passed out. He said surgery was the way to go. We asked about radiation but were told that would be saved for second time around since there was a 35% chance it would come be back even after being removed. I told him I needed time to think. I then started reading and researching and talked to friends and relatives about their side effects. At first I decided to wait to see how fast it progressed but the more I learned about the side effects the more I was determined that as a 50 year old man I would just carry on with life and hope I could get 15 or 20 years without symptoms. The Psa was 4 at diagnosis with a nodule on left side. 50% left site 10% right side. Two years later biopsy and scans showed nodule gone and 1% left side and 3% right side. Over the next 19 years the Psa slowly climbed and I felt I was on pace to die from something else before the cancer got me. I have to admit I got a bit reckless when it comes to diet after 10 years or so. Nov. of 2020 I got Covid. Hit the Mon. before Thanksgiving and lasted 15 days. Fever reached 104 two nights and O2 went down to 88. Took months to recover. When I finally got in to see my urologist March 2021 my Psa came back over 300. I couldn’t believe it. He sent me for ct and bone scans and the cancer had spread to ribs, lymph nodes, both lungs, pelvis, spine and fight femur. My urologist asked me to consider Lupron which I did but declined. Having arthritis of the spine, stenosis and three herniated discs I figured the sciatica that I suffered off and on for over 20 years was the cause of my pain. Psa continued to climb to 400 then over 700 and down to 600 and then 300. Next thing in Nov. 2021 it spikes to 900 at which time my urologist retired. Took a few months to get a new urologist and he ordered an mri. It wasn’t pretty to say the least. I had 2 compression fractures among other things. He told me if we didn’t intervene I was looking at catastrophic spinal events in the future. By this time I had been on and off crutches for several months and severe pain during that time. I gave him the go ahead and started Casodex for thirty days and half way through that I started monthly Lupron injections. My Psa by now was 5664. It came down to 278 in a month and over the course of the next 9 months dropped to 6.6 which is as far as it dropped. This was March 2023. After two monthly increases he referred me to an oncologist. After a new set of scans and blood tests I started low dose Abi. Psa climbed to 19.14 on Sept. 5. Alp was 141. Abi was started Sept. 9 and on Oct. 3 my Psa was 4.74 and alp dropped to 114. Other numbers normal so far however wbc was elevated slightly which is probably due to prednisone. Hind sight is always 2020 but if I would have had a crystal ball I would have only changed three things. The first is diet, I would have eaten less red meat and processed foods. 2nd, I would have started ADT summer of 21 and possibly spared myself those months on crutches and 3rd I would have started supplementing with curcumin and magnesium many years ago. Some may think I was crazy but I had over 20 years symptom and side effect free years. I am back to hunting and fishing and doing chores around the house. I don’t know how much time treatment will buy me but if the side effects make life unenjoyable I will refuse treatment. Some people look at grave markers and look at the dates. To me it’s what life was like between the numbers that count. God Bless!
My story of my 23 year battle with Pca. - Advanced Prostate...
My story of my 23 year battle with Pca.
Amazing story brother... Also similar to me...in that I regret waiting so long for treatment... Your journey gives me and perhaps others much hope... Thank youfor sharing 🙂👍
You are a brave man, keep on keeping on!
I either have a bucket full of balls or a thimble full of brains.lol. Now since I’ve been on ADT for over a year I think we both know it isn’t the bucket full of balls.😂 God Bless.
It’s addictive once you are on it. It’s the exhaustion I fight. Blessings!
That gives me a good picture of what my life would have looked like had I not gotten curative radiation therapy when I was first diagnosed. I've had no symptoms of therapy and have never had to worry about symptoms of metastases since. It is good to read about the crippling metastases and strong medicines I was able to spare myself. While you were able to give yourself a few good years, I was able to give myself a lifetime of good years. My life has been totally different because I made that decision.
Well I wish you the best but you are not out of the woods quite yet as recurrence is still possible and radiation treatment for prostate raises risk for bladder and colon cancer. God Bless.
My PSA has been below 0.1 now for 7 years. Risk of bladder and colon cancer is minuscule.
Hi Tall_Allen, Is there any where we can look at your journey with PC? Especially the treatment you had? You offer a lot of help and good advice on this forum and so it would be good to know what your diagnosis was, your treatment and why you elected to take that path. Thanks.
In my profile
I'm glad you did that route, TA. We have a minor dustup once in a blue moon, but I always go looking for your comments on every post. Glad you're here to guide us, even if as rebellious children we don't always follow your guidance.
"Us"?Do you think you speak for anyone other than yourself? Everyone is free to do and post whatever they want (within reason). I don't consider you "rebellious children", I consider you to be adults capable of making decisions for your own lives. My bias is medical science, if that's not yours, you are free to ignore me.
I speak only for myself. I've never thought otherwise. And I'm glad that medical science is your bias.
Good luck to you Sir, My story is similar to yours & at 74 I can only look back & think how stupid I was to have injections of T or steroids years ago which started the rising PSA.
Now after 12 years of intermitant ADT the PSA is below 1 & I count every new day as a blessing.
Good luck to you as well my friend and God Bless.
There is absoltely no way of knowing with certainty how huch different you life would have been had you elected surgery or radiation all those many years ago. One man's story does not meaan your path would have been the same. Treatment would have raised the probability of avoiding what you are experiencing now.....but only increase the probability, not guarantee a better result.
Nowadays, most Docs would have offered the option of active surveillance for your situation, but your Docs didn't mention that? with surgery, who knows..you might have been one of the 10-20% with lifetime incontinence problems?
I say, congrats on making it to your 70s, and here's hoping you are lucky and surpass the short life expectancy others here have mentioned for your case!!
This game is all about probabilities of benefit vs probabilities of unwanted SEs....and how each man views the reward/risk probabilities. Just personally, I haven't found Docs who are really willin/helpful in discussing those probabilities.
I appreciate you sharing your incredible journey so far. Here’s to more fishing and hunting and even more chores!
What was your Gleason score on your second biopsy?
There was much less cancer second biopsy, Gleason was same. 3+3-6
It is an unusual path, but you are not alone 
We both have chosen similar non treatment path initially and that gave us ample time of excellent quality of life (at-least what we though at the time what good life should look like.😅). I'm sure some others did that as well.
You don't need to defend your reasons and choices at all, each of us have different life path and different life circumstances, environment, family circumstances, inherited mutations, cancer aggressiveness, believes (who have them) and as a result come choices. There no better or worse choices... they are just different.
The only probably differences in our paths is that I didn't test PSA at all after I dropped it from 13 to 5 and then I don't regret or would not do different anything knowing what I know now and being where I'm being now. Also you lasted longer without treatments 😱😂
When comes the time to discard this physical body - I will gladly do so and may even help to speed it up the process 😉 and happily go HOME.
So cheers to life without fear whatever path we take!
I've had some similar experiences. People don't realize how dangerous Covid can be to cancer patients. Like many others, I thought the sometimes Draconian Covid precautions were overdone for most people. I still think that, but not for cancer patients. I was diagnoses with PCa in 2011, age 69. Got the laparoscopic prostatectomy in 2012. Pathology showed it was Gleason 4+3=7, but margins were clear. My PSA continued undetectable for 39 months. In late 2015 PSA (0.2) showed a recurrence. It continued to climb very, very slowly. I was offered radiation in the prostate bed, with the hope that it could possibly be a cure. I declined, because of the almost certain side effects of the radiation, which tend to get worse over time, whereas my mild side effects of the surgery improved over time. Life was good, and I enjoyed an active retirement -- lots of travel, pickleball, dietary supplements, very limited red meat, stress reduction, etc. It took 8 years for my PSA to increase to 1.0, at which point I got a Ga68 PSMA PET/CT scan which was negative. I got another one a year later; still negative. I got into a clinical trial of an new Cu64 PSMA PET/CT scan plus another Ga68 PSMA PET/CT scan; still nothing lit up. That brings us to Feb. 2023. My PSA was 2.0. We went on a bucket list 14-day European River cruise. About 1/2 way through the cruise we noticed a lot of people coughing and sneezing, and there were no Covid precautions on the ship, except a few hand sanitizer stations near the dining room, and we work masks in crowded places like the elevator. Another couple of days, and I was feeling weak and tired, and generally unwell. On one of the excursions my wife found a pharmacy and got some Covid test. Bingo! I was positive. My symptoms were mild, and about 10 days later I tested negative. Now, early May 2023, I got my quarterly PSA test. It was 7.7. A week later I got a retest, thinking it was an error. But, no. It was now 8.8. I went to see my oncologist, because I obviously needed to do something. I week later my PSA was 15.3, and I started on Androgen Deprivation Therapy (monthly Firmagon shot) and Xtandi. My doctor and I and another epidemiologist M.D. believe that my healthy lifestyle, and strong immune system held the cancer at bay for 8 years, but the Covid knocked out my immune system, and I went from very low PSA recurrent PCa with otherwise, no evidence of disease, to advanced metastatic PCa with metastases in the scapula, femur, a couple of ribs, and a couple in the spine. So, cancer treatments are the new normal, which likely wouldn't have happened yet if not for Covid.
Thank you for sharing. My urologist thought it might have been an immune system breakdown as well but now I’m not too sure. When it happened there was nothing to read or research because Covid was new but now there are some things to read and it seems it may not be totally linked to an immune system. God Bless!
My story battling the FUCKING MONSTER for 21 years:
I'm still not room temperature (yet).
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/09/2023 7:35 PM DST
Wow John, I read your bio and it is one of the worse ones I’ve seen. I have a friend who was diagnosed same time as me. He had the surgery which failed then Lupron and radiation. Ended up with diarrhea 24/7 and bowel incontinence. Another guy had robotic surgery and they nicked his colon. Now he has a colostomy. Cancer sucks.
It reads worse than it is..........I should have placed a comma after the words "My story," since I wanted to give hope to the Newbies that it's possible to outlive the odds.........
BTW Your post is really inspirational..... Take a bow......
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/09/2023 10:33 PM DST
No bow my friend, all glory goes to God! God Bless.
John I always appreciate your sense of humor.
A most interesting post. Thank you.
I agree with your decisions, all of them. That’s why I stopped the Eleguard after a year, side effects were awful, at least for me. The weakness, the hot flashes, the sensitive nipples, all of it, not to mention, I couldn’t even stand to be touched by my wife in any way. My radiology oncologist said I had a 66% chance of him curing me after I already had the surgery and that I would probably die of something else if I wasn’t completely cured because, he said, it would add many years to my life. Well, after that my cancer is still ongoing and I’m now completely impotent, incontinent and my penis has all but disappeared entirely. But hey, I’m still alive and life is pretty good. Now we’ll see if he was right and if I die of something other than prostate cancer.
sorry a little late to the show, but I am right about one thing we all have a life changing journey in our past and now in the future. Keep up the amazing trip🌟
One day at a time my friend. And enjoy each one as much as possible.😊
Gleason 9 with mets and PCA = 3.7 at time of diagnosis
Ten year battle is over.
New to the Pca community, Stage 4 with Mets
My Story
