Had a overall physical of everything which included PSA which was 6 in 2016 and didn't put any attention to it and ignored it, nobody I spoke with who saw the report said to do anything. No family history of prostate cancer that I know of.
Now 7 years later age 64, PSA 18, Free PSA 11% ratio, prostate normal size, no symptoms. Had ultrasound to follow up and it was confirmed 2cm long tumor in normal sized prostate, ultrasound report stated PI-RAD5, and referral for MRI and biopsy. Been reading day and night all over and found this forum through a friend who has been through radiation, etc. I am not interested in surgery or ADT at all, my quality of life preservation is more important than anything else. My personal option is radiation such as IMRT or Cyberknife, however I have not made any appointments with any Doctors yet for a targeted biopsy to get Gleason score, I am grateful to have found lot's of good Youtube videos and articles. Question is anyone who else waited a number of months (I want to wait for Medicare to use for all this diagnosis and treatment), doing more research- and changing for exercise, walking every day and changing diet from anyone else who has similar stats.
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I overlooked a psa score as well .. nobody brought it up initially. From 8 to 12 to 18. Doubling score is important and it seems yours is slow. I chose to have brachytherapy , ADT before, during and after … with 15 external beam radiation treatments. The key is keeping it from metastasizing.. how many years do you need to wait .. is the tumor close to the wall. If your wait is a year I’d do the ADT to stop it from spreading now. Quality of life will not exist if you let this go untreated.. you are potential at a point where you can beat this for good based on the psa doubling times. Health insurance sucks especially in the US , I’m lucky to be in Japan and don’t really have to pay a lot. Overall the treatments weren’t bad at all .. I’m finishing my 9 months of ADT at the end of this month..was Gleason 7 … the adt isn’t good .. quality of sex is min existence as well now and don’t anticipate being able to ejaculate but can have an orgasm .. that is the quality of life that sucks..as well as weight gain and man boobs .. not bad though not sure what the experience will be after my testosterone recovers..hopefully but that’s the worst of it… the alternative is not better .. good luck to you !
Thank you for you response. The ultrasound report stated no signs of has deferens, urethra or capsule involvement. I have no option other than going bankrupt as not enough extra cash for treatment, no USA insurance but only is surgery since my country of residence does not offer Radiation but have local and country insurance, living on small SSA pension way below poverty level so can't even afford to live in the USA, hence why I left and Medicare is available in a number of months, trying to sell property now 6 months, no sale yet. Finances are my main issue for holding off. Didn't mention found tumor 2 months back, have been trying to get US COE appointment, all are booked at least 2-3 months just to talk to Dr about this, let alone transperineal biopsy. Tumor is I believe near bottom of capsule. Have lost 40lbs in past 6 months from changing diet, not feeling hungry either. Blood work had bilirubin out of range, but cholesterol way down to 150 from 240 years past. The ADT will ruin my active life, so reading about it scares me. How much time between your PSA interval increases? I plan in March to get new ultrasound and PSA to see if any change to cause me to just fly out. Need to wait about 7 months for Medicare and go back to USA for biopsy and radiation treatment.
Welcome to the club. I'm not sure what you consider to be an active lifestyle, but there are plenty of us that continue to work, exercise, travel, etc while on ADT.
If you provide details of where you live, you may find others in your situation and can offer advice. I take it you are a dual citizen, it's possible you could come back to the US and get Medicaid which may provide treatment optionswhile you wait for Medicare. You might even find employment with benefits.
ADT is not as debilitating as you read. Many of us on it are as active as we were before DXd.
I play ice hockey, bike ride, hiking trips (Dolomites, Italy in Sept. 2023 and Pyrenees, France and Mt Washington, NH Aug 2024).
I would get the biopsy right away. Maybe it is a 6 and you can just wait. This can be a really bad disease. I just spent 2 years on ADT and Abiraterone and had minimal side effects except that I was uninterested in sex. That is better than interested but unable. I just did not care about sex. I did lift weights and exercise.
You say you are "not interested in surgery or ADT at all" and prefer IMRT radiation. I chose IMRT over surgery because of my low stage (G 3+4) and high age (78). But you must have ADT. I failed to choose it after radiation, and that has allowed some cancer to remain in the prostate and spread to the nodes. I finally started ADT with Orgovyx last December to control it.
Thats great that you accept the ADT, and it changed to add years, I like your plan as you were AS for a number of years? If I read between the lines? My genetics are maybe making it to 78, as most all my family died by 78.
No, never did AS. I got radiation as soon as diagnosed. I failed to get ADT then, and am trying to make up for the lost years of ADT that allowed metastases.
First of all best wishes for however things turnout for you .
Before you start deciding what your your treatment should be, it is prudent to find out if your cancer has spread beyond the prostate. Is it in the lymph nodes? is it further?
Once that question is answered, then the discussion of treatment options becomes viable.
Yes, agreed any idea if the MRI Tesla 1.5 is worthwhile or must rely on latest PSMA pet scan or 3T MRI? Not sure if 1.5T MRI has contrast for prostate available.
Yes, been reading the Dean Ornish report, related dietary reports, so thank you for confirming and also not eating dairy, eggs, etc. Radical diet change for me but willing to change. I walk daily and need to up the distance.
When you say "working immune system" help me out with understanding, if you would.
So you mean lots of cardio?, I need to find something I can do since I have knee and shoulder injuries prevent playing sports or tennis. No convenient pools around either. Need a stationary bike - good idea, and gym is close by, should be raising my heart rate to the recommended level.
I already have autoimmune diseases of thyroid and gluten intolerance/celiac. Failed every treadmill test due to an inverted t-wave, where they shut down the ecg and treadmill machine even though I feel fine. Not sure I am eligible for general anesthesia, they would only use IV sedation with Versed when I was last in hospital for an injury. So no idea if eligible for brachy which I read requires general.
To start out, I am eating mostly avocados, tomatoes, brocolli, fresh fruits, cannot digest kale like greens due in part to the digestive/celiac like issues for 20 years. Non drinker for many years. I am struggling with no chicken or eggs no due to Arachidonic acid discovery on the video, eat red meat sparsely, no McDonalds garbage food for years. Recently started D3 supplements (with food of course), B12, saw palmetto, zinc, vitamin C.
Past few months stress not sure if it helped but was great to lose 40lbs (ended years of BP meds now normal 120/80, one reason to figure out why easy weight loss and for taking the blood tests) eating next to zero soft drinks, candy, chips, processed foods etc. Its a struggle, but now 20 years gluten free 95% compliant changed my life. Also got rid of stress which dropped PPI meds for reflux.
Thank you all for you input. Yes, I thought about an MRI but the local hospital only has 1.5 Tesla and speaking to the US University nurse for the Doctor, she implied 1.5 would not be high enough resolution imaging for metastatic. Not sure about validity. I would not qualify for aid since I have assets, albeit illiquid. The stress of all this really bad, and I am just not willing to take ADT and live a celibate life, and ruin possibility of T returning to normal. I have no family, spouse, etc so need to pay for assistance if metastatic out of pocket and final hospice care when the time comes, my situation is tied permanent outside US, and will need to travel back and forth for treatment. I feel my days of a really great life (which I am really grateful for) are over, have no bucket list as I am content but at same time heard stories of others die of this but no idea their PSA or how long the suffering is.
You said " I am just not willing to take ADT and live a celibate life, and ruin possibility of T returning to normal."
I don't know if ADT means celibacy like damage from surgery can. At age 81 it's not an issue for me. But Orgovyx ADT has minimal side effects, and returns testosterone to normal very quickly after stopping.
O have been in ADT for 11+ years and while the side effects are significant (for me: loss of sex drive, some lethargy, “mamboobs” in addition to others, I am VERY happy I chose the treatment and am alive and living a pretty good life. Perhaps, you should give the decision not to get treatment some more consideration.
True, maybe I am a 3+4 or 3+3, but at this PSA unlikely I think. Late March will be 3 months since discovery so new PSA if 18 remains and rectal ultrasound tumor size is the same, and buys me time.
Agreed. Live each day like it was your last one. That's why I am doing what I do, especially for past few months.
My attitude is either I live good quality of life which means no "tool" malfunctioning.... or I pull the plug out of the wall. I have avoided Dr's most of the past 20 years, and am skeptical due to personal experience of seeing so many critical mistakes happen to my friends- like my 2 recently deceasee friends who just died, delayed diagnosis both... By the "system" one turned to pancreatic cancer, human error on friends who died after paying huge cash for surgery, hospital infection I got, ulcers from stiches not dissolving, misdiagnosis' for years on my digestive issues, SSRI scam I bought into for a few years, the medical profession itself, "publically traded, industrialized medical system", like insurance its all about profits over people. No, I am not a big fan of state control or socialized medicine either. Hospitals were operated by benevolent organizations and churches who cared about people when I was born. Gone IME. Sorry about ranting, it is difficult to be in a positive mindset. I would rather lose a kidney or leg than lose use of my "tool".
Are there any links here to a personal story or website or timeline/diary of someone stage 3 or 4 who omitted treatment, describing details such as what sort of pain or disabling situation they faced and for how long? I know the variables are many, pelvis, bladder, bones, lymph, blood spread. I watched my father suffer daily lymphoma -lukemia 3 months his final days, lymph shut down, it was awful but at least he had morphine.
"Are there any links here to a personal story or website or timeline/diary of someone stage 3 or 4 who omitted treatment..."
I don't know the sequence if treatment is completely omitted, but it must hasten the process. Maybe you can find something at this site which has very many stories: yananow.org/query_stories.php
I recently talked to a lady whose husband passed a few years ago with no treatment except ADT during the last year which I think helped with pain. The odd thing was that he was a doctor. She said it took five years from diagnosis, with three good years and the last two years getting worse, and that pain meds were used.
Treated cancer usually eventually goes from nodes to bones, where it can cause severe pain. Even to the skull. And if the pain cannot be controlled, I would want it to move on to the liver so it can bring death.
I would want to take all the treatment I could find, and try to push the end date out beyond where something else will get me first.
Thanks, I will read those links. Appreciate it. Yes I am expecting something like that 5 year thing if this spreads. Until I get my Gleason, I won't know much more.
Thank you!!!! Wow, great website Yananow.org. I found a couple of questions answered I have not seen elsewhere that being PSA 50 generally accepted as metastasized, (not all cases of course) and 12cc tumor volume, which is 1/2 of average lobe size.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
Thank you. Yes. I am beginning to see this PC is a treatment factory. I will plot it, print out yes need to keep records for sure. As far as I see, I imagine minimum say 3 years up to 10. My end game scheme is to avoid hospice, yet live my life to the fullest right now and going vegan with exercise only for a few more months. No biopsy yet, assume I have had this lesion at least 10 years growth based on a cell doubling video I watched. I was PSA 6 in 2016, so smaller lesion likely way back then.
Trying hard to reduce stress, good news today no rapid progression of PSA as in December it was 17.9(18). PSA March 2024 17.6, stable. Free PSA nearly same 2.1 in Dec and 2.4 today. Ratio December 11%, now 13%. Used same lab, $80 for both PSA total and Free PSA.
Changed to strict vegan diet and increasing exercise. No more arachnidonic acid foods like Chicken and Eggs which I've eaten daily for years.
Making Lycopene a priority in tomato consumption daily, bean only chili's with cayenne and other spices. Using watermelon, banana, pineapple and broccoli smoothies to get cruciferous vegetable daily. ( I hate broccoli). Eating lots of fresh papaya and soursop as often as I can. All the antioxidant foods I can, trying to follow MacDougalls diet and Marcus Rosenkrantz "heal yourself" diet advice. I am determined to be a test case to see if my diet change will put the lesion growth to a standstill or a minimum. Hoping its a 3+3 (unlikely), and get at least 10 years more without losing functionality. Daily 25mg Viagra as recommended in above video of Sloan Kettering Dr.
Reading more about Tulsa Pro and IMRT. Concerned about stray radiation beam on the 2 nerves for erectile function up front. Will check PSA again in May. Will sign up for Medicare in June and travel to see a MO and get mri guided transperineal biopsy under IV sedation after September provided PSA remains the same.
Quality of my sex life versus quantity of remaining years remains my goal. No knives or hormones for me.
I found this recent video interesting for anyone looking to alternative ideas.
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Newly diagnosed and BRCA2 mutation
hormone therapy and Salvage radiation with PSA at 2.41 
Newly diagnosed
Have any others had "clear" pet scans before the new one? And then Suddenly with the new test....metastasis appears!
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