I find this forum useful and informative, especially when members share from their personal experiences.
IMO the dropping of the referenced guideline is not an enhancement to this forum.
Currently, I am one of the participants in discussions about surgery and ultrasensitive PSA testing. I have considerable experiences with both and share mine.
Others denigrate surgery and ultrasensitive PSA testings without sharing their personal experiences supporting their opposition, and in turn get personal and judgmental.
How do denigrating comments help "unlock" all the disparities and challenges we face fighting this beast?
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NanoMRI
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I believe NanoMRI refers to the three suggestions for posting that occasionally appear just before you write a post. We love it when our community members share their experiences, but we also know that many here have insights and understanding beyond their personal experiences. We want you to share those too, to the extent that those are prostate cancer related or within the realm of our QoL posts, And, of course, not spammy or too wacky or dangerous, e.g., leeches cure prostate cancer (they do not).
Appreciate the participation. To your comment "we also know that many here have insights and understanding beyond their personal experiences. We want you to share those too, ":
So, it is fine for someone that has not had surgery to speak against it, to say they are sorry surgeons did it to me?
And another can essentially say ultrasenstive testing is wrong and should be stopped?
My post is not about leeches curing prostate cancer.
I'm sorry Nano but I just don't get your post. Everyone is ok to post about there personal experience here. Knowbody should be afraid to post. I think for longer term members, like yourself, for example around ultrasensitive tests, you could share your experience and say why you do this but also caveat this by saying for newer members that ultrasensitive tests can increase anxiety and that these are not standard of care. Just give a balanced opinion. Good luck to you sir.
How is one posting a personal experience when they speak strongly against something they have no personal experience with?
I believe I share my useful experiences with ultrasensitive testing in my bio and in my replies.
'Standard of care' encompasses a very broad range of (sub)minimal to the ultimate in care. Seems hard to accept but its roots are legal not medical. I lived in Surrey, Dorking, for the better part of ten years, had staff there and paid their NHS taxes and for their additional Bupa private insurance coverage. I did experience that the 'standard of care' under the NHS is less loosely defined than here in the US.
My cancer was diagnosed by urologist at New Victoria Hospital, London; my US urologist and I missed it for at least several years. I continue as a private patient of Royal Marsden - they offer 2nd opinions on my imaging and treatment path.
Ultrasensitive testing is most certainly within the broad spectrum of standard of care. Labs offer it, doc's scribe it, private insurances and US Medicare pay for it. And I have had several ultrasenstive tests in UK - not all labs offer it and one has to very specifically ask.
As for ultrasentive testing increasing anxieties, for me, and many men I know who have had RP, it lowers anxieties. I can appreciate how for men who have not had an RP it can be confusing and cause anxieties. I believe this is a clear distinction all need to understand.
Good luck to all of us fighting this beast and dealing with all the disparities in diagnosis and treatment.
As a person who has enjoyed your posts, I believe that there will always be those who disagree with individual aspects of your and other posts. Just answer them in a civil manner. Members here are all over the map but are pretty savvy about detecting BS, imprecisely worded sentences, assertions that may be shaky in differing degrees, and even sound advice.
Sounds like there are no restrictions on anything you've said so far. Some on here have great knowledge about clinical studies of treatments, supplements, rituals, etc., even if they haven't personally used.
I can relate with using usPSA. I was sold the "undetectable" myth and it bit me when I learned the hard way that it really doesn't mean there's no cancer there.
A BCR at .1 after 8 months and then a race up to .4 in nine weeks. What happened in 90 days that I was "undetectable" to detectable?
A usPSA would have allowed me to understand that the doc had missed some of the cancer and I was for sure going to need a second treatment for a curative attempt.
Also a clinical trial isn't an end-all, be-all or gossipal. There are selection processes to participate in the trial.
On face value I had low volume disease of 1/6 was G7 @ 90%. Two more were G6 and a psa of 15.9. My urologist minimized my concern to have surgery - you're only 1 of 6.
Eight months after RP it was in a pelvic lymph node with 36 lymph nodes taken at RP all clear. But tertiary 5 at the bladder neck (don't worry about that, we may have already gotten it), rt SVI, PNI, EPE. (Was told - usPSA is not needed because it takes several months for your psa to drop. Minimal disease that will most likely disappear may show a little bump in psa. It'll do nothing but cause anxiety. -- I guess he forgot to tell me that it will also show missed disease).
According to the data and studies, I wasn't a high risk for prostate cancer. Not old enough - only 53, Caucasian, NO morbidity, no health history, healthy lifestyle, fit, active, NO known family history, no germline mutations.
BUT within 12 months two curative attempts with RP and then 33 rounds of EBRT radiation and two years of ADT.
usPSA has its usefulness and utility in managing prostate cancer. I'm also using it as a confirmation of stopping treatment along with the standardized tenths and a possible blood biopsy later this summer.
Clinical trials are guides not absolute definitive treatment for every single man with prostate cancer. But many take them as gospel!
BTW wasn't there a group of "experts in disease prevention" who said "DO NOT USE PSA TESTING FOR SCREENING FOR PROSTATE CANCER IN MEN OF ALL AGES" because the HIGHLY flawed "PLCO trial showed no significance" - that recommendation has increased distant metastasis at time of diagnosis by 43% from 2010 to 2018. Why aren't we attacking this recommendation off of "trial evidence"?
How many men with advanced and incurable prostate cancer here on HU would love a do-over and have the opportunity to screen earlier? Age 40+?
I agree with just sharing one’s experience, to my knowledge there aren’t any doctors here, so if they have no experience with something they should be measured in their response and shouldn’t give medical advice. Sharing information you’ve read about something or the experience of someone you know is fine as well. But unless someone has spent time in the shoes of someone dealing with an aggressive, potentially deadly form of this cancer they may not understand why someone would feel it’s important to have an ultra sensitive PSA test and should just withhold responding. I’ve had both radiation /debulking and have used ultra sensitive testing both to my benefit so I can understand your post. Both of those were dismissed as useless by some. But without using both of those which were recommended by some outstanding doctors I might not be here 10+ years after a Stage 4 Gleason 9 diagnosis.
Everyone of us posts our opinions here; and, since opinions are like butt holes (everyone has one), some "smell" better than others. Our own experiences tend to clean up our own opinons, and perhaps also sully the opinions of others. It is up to each of us to be tolerant of opinions born from different (or no) experiences, and cognizant that our own opinion may not smell rosy to all.
That said, I would be in a different place without relying on uPSA (to the hundredth decimal). I hope my overall survival benefits because of it.
I have used u/s PSA testing extensively in my PCa journey over the past 16 years. I have used the results from the u/s assay (usually with a detection threshold of .006 ng/mL but for a time at .015) to make decisions (in partnership w my docs) about changes to meds and supplements, and at times while my PSA remained below 0.1. For example, I decided to stop TRT after it rose steadily from <.006 on three consecutive PSA tests but before it approached a PSA of 0.1.
Some may feel that I was too conservative, but my collective decisions have been followed by an outcome to date that I'm very satisfied with: undetectable PSA and a very satisfactory testosterone level (after resuming TRT in a different form 21 months ago).
In light of my experience, I would feel frustrated without access to the information that u/s PSA testing has provided.
My husband never had surgery as a choice. His primary care doctor died without informing him of PSA result of 7, when he would have had a choice. Nine years later, his next PSA result was 40, Gleason 9, peri & retro aortic lymph nodes positive. Surgery was no longer an effective option. Neither was radioactive seeds, what my brother had that was very effective. When men don't go to the doctor when they should for screening, they suffer the consequences.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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