Before I leave this wonderful group I'd like to pick your individual/collective brains. Since it's too late to help my husband, I'm looking for info that I can pass on to my son and 6 grandsons so they might better understand this awful cancer should they ever get it. I'm also providing a bit more info about my husband's bio. He started experiencing ED in 2013 and his primary's answer was, of course, an Rx for viagra. It didn't work and my gut told me that he needed a 2nd opinion. I found a new primary and the first thing he did was order blood work which led to an immediate phone call when he saw a PSA of 18. He referred my husband to a urologist who confirmed PCa with a biopsy and in turn referred us to a surgeon. We also met with a radiologist. We chose the surgery. Things went bad due to an adverse reaction to Toradol postop that caused acute kidney failure and 11 days in the hospital. At that point many thought he wouldn't make it...my instincts told me to request all records about his stay and it cost me $250. I didn't know anything about PCa at that point but decided I wanted those records. Discharge included the surgeon saying "you have nothing to worry about since I got it all" and no other instructions except to see a nephrologist to watch creatine, which was "3" at discharge. In 2018 he experienced abdominal pain and I took him to a different hospital's ER. He had bloodwork and a scan which showed not only kidney stones but a PSA of again 18. I researched doctors/hospitals and transferred his care again to one that specialized in cancer treatment starting with a urologist who specialized in PCa. I ran around to several hospitals to get copies of scans and slides from surgery. Lupron was started, lots of scans for comparison. The PSA went down a bit but not enough so we were sent to oncology where MO added Xtandi to the lupron. PSA went down and remained undetectable until 2023, although the Xtandi caused many SEs which at time meant ER visits. During this time I learned a lot more about PCa and read through the records of the surgery. I was astounded the find the words "PNI and positive margins" which we were never told about. His testosterone got very low. In January 2023 the PSA started rising just a bit but I knew that was bad. The next showed rapid doubling and then tripling, while the SEs were becoming intolerable. Finally to my questions. I've come to understand that doctors use ADT to remove testosterone since they believe the cancer feeds on it. So after surgery and ADT, with testosterone at a bottom level, what then do the cancer cells feed on to cause yet another recurrence? I've said before that our MO told us that the drugs work until they don't because the cancer eventually outsmarts/overrides them. Are doctors relying too much on thinking it's only the fault of the testosterone, which plays such an important role in a male's body? I can't help but wonder if the arrogant surgeon had told us about the PNI and margins as well as urged us to be vigilant, his outcome might have been different with a few more good years. That's why I'm still open to learning more. Thanks for any insight you might share!
Request for Input: Before I leave this... - Advanced Prostate...
Request for Input
Hi Shamrock. I have just read your thoughtful and heartbreaking note. "A few more years..." And wanting to read more in support of children and grandchildren.
Your husband's story is also maddening. Yet it's a positive thing that you've asked what is an important thing to share with others to help prevent all this?
My answer is first of all, regular PSA testing for men, which may catch PCa early and especially before it metastasizes.
I will share two general posts with you which summarize what I have learned from my own experience - even though my experience has followed a different path so far. There are lots of replies too from many people that add more insights. (Both "reposts" link to original items a year and a half ago.)
healthunlocked.com/advanced...
healthunlocked.com/advanced...
Thank you! You're right and that why I still get angry at that surgeon who denied us the important info about the PNI and margins!
First of all, I think it's wonderful that you continue being constructive and want to help your family.
It's bad that you and your husband didn't know about the PNI and positive margins. Normally the surgeon himself says the results to the patient. After surgery there should be regular PSA checks every 3 months to know if there isn't a recurrence. If there's a recurrence then it's normal to do a salvage radiotherapy and start ADT.
For your son and your grandsons:
Regular PSA testing and Digital Rectal Exam checks. If the PCa is in family then the males have higher probability of getting PCa.
Start PSA testing when 40 years old. Maybe even try genetic testing (BRCA1/2, ...).
If they got the PCa, and I hope they don't, then they should not panic and study as much as they could.
Good sources of info:
- books
- Mark Scholz MD, The Key to Prostate Cancer (prefers radiation over surgery)
- Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (prefers surgery over radiation but contains a lot of information)
- this forum (healthunlocked.com)
- Tall_Allen's blog: prostatecancer.news/
---------------------
It's true that PCa feeds on testosterone, but testosterone is not only created in testes but also in adrenal glands. Later PCa creates its own testosterone.
Wikipedia says: "Over 95% of testosterone is created in testes, the remainer is created mainly in adrenal glands." [1]
Here are quotes from the book by Mark Scholz MD, The Key to Prostate Cancer:
About Lupron-like type of ADT: "Each of these agents eliminate most, but not all, of the testosterone in the blood. The adrenal glands produce small amounts of testosterone and are unaffected by the Lupron-like medications."
About Zytiga and Xtandi: "Prostate cancer cells with resistance to the Lupron-like drugs manufacture their own testosterone (instead of feeding on testosterone in the blood). Zytiga works inside the cancer cell to block the synthesis of testosterone. Xtandi also works inside the cancer cell. It prevents testosterone from activating the androgen receptor that turns on cell growth." [2]
I hope you and your family well.
.
.
.
Links
[1] Wikipedia: en.wikipedia.org/wiki/Testo...
[2] Scholz, Mark. The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer . The Donohue Group, Inc.. Kindle Edition. Location: 3249 of 7268
.
Edits: removed word 'sometimes' before DRE, Changed saying "Start PSA testing when 40, max. 45 years old." to "Start PSA testing when 40", added book recommendations
Yes start prostate cancer screening at age 40. Not 'sometimes a digital rectal exam'. Always a DRE. My PSA was only 2.7 when a DRE got me sent to a urologist for a biopsy and a positive diagnosis. I had to nag my primary care physician for that DRE and he refused to test my PSA level. The urologist was surprised that he had to order the PSA test. I was age 66 at the time.
Yes they wait too long. I had my first DRE and psa test at 51 and by that time I was already stage 4 with a psa of 78. I so wish it would have been detected years before when there was more chance at a cure.
That's the first time I've ever read that the cancer cells are able to produce testosterone. I'm confounded by that! Seems logical that should be the emphasis of research as to how. So really ADT aims to reduce the supply while the cancer cells use what's there prior to production to continue spread and dominance. Reminds me of science fiction movies where an alien invades a host body. No wonder there isn't actually a cure....yet.
First time I see it phrased this way but since our body can generate water from fat while we fast and can generate glucose on its own when we go carnivore, it is not too far fetched that some cells could generate testosterone. Our bodies are like alchemists. 
We were told it just puts the cancer cells to sleep until they figure out the new treatment and then they wake up and become active again in which you need to try another treatment right away to put them back to sleep.
Cancer is sneaky, I dont understand. My fathers stage 4 prostate cancer was controlled for so many years, (7) his psa last year was 1.2 and his bone scan showed no activity, he started having bad headaches so I asked for a CT of his head, they didnt want to do it, but I insisted.
They did the CT/then MRI and it had moved to his brain????! We were all stunned, his oncologist says it rarely ever happens, he even reassured us when he ordered the CT that if we were worried about it going to the brain we didnt need to worry, its extremely rare, well it did, he has one large tumor with now leptomeningeal mets to the spinal fluid and brain lining...his testosterone is still in castration level and last psa was 2.4. Sorry to hear about your husband, dont beat yourself up over too much questioning of anything because cancer is unpredictable and we were thrown for a loop, his oncologist basically turned him over to rad onc because his primary concern now is the brain, ugh. Best of luck to you.
Yes, our MO said the drugs/therapies are eventually outsmarted by the cancer. I don't have enough experience with science to even begin to understand how rogue cells can have such a capacity. With my husband's 2nd recurrence he was done and chose to stop treatments and side effects, which were getting unbearable. There are no easy choices with this horrid disease but I've accepted the fact that while I will miss him every day of my life, I know he's no longer suffering. Thank you for sharing your story and I pray that your dad gets the treatment to keep him comfortable.
My advice to any young man* who was diagnosed with Pca is to try to marry you. You are such a sweetheart and a wonderful wife that you would be a great asset to any man. We love to see you here because we know that your dear husband is watching you and therefore he's watching us.....As I've said before............ STAY WITH US - PLEASE...
*p.s. If he's filthy rich, that wouldn't hurt....
Good Luck, Good Health and Good Humor.
j-o-h-n
Your concern for your husband’s ‘survivors’ speaks to the sort of care he received from you. So commendable.
In general, my recommendation to them is:
As much as possible get diagnosis and treatments at centers of excellence for the conditions you are experiencing, particularly cancer and cancer related ones. Research who are the best recognized Top Docs for your situation. And if there’s any genetic predisposition, then be as proactive as you can with screenings and BSOC diagnostic testing.
Thank you so much!
Not what you're looking for?
You may also like...
Decision time...looking for input
asking for members' input
NEED THE COMMUNITY INPUT
Wife seeking input regarding RT
Need input on ADT, Brachytherapy, etc.
PSA doubled, MO has had little input
Per Request
Input and opinions welcome
Need input from members 
Looking for input on Chemo & Oligometastatic 
