I'm 73 y.o. under TRT. I've just undergone a PCa screening: PSA=3.2, DRE:normal so, nothing to worry about, but because my 2 brothers (both MD !) have PCa, the urologist prescribe me an MRI.
The MRI was higly suspect, P volume=45 , 3 lesions Pi-RADS 4/5, one of them quite big, Likert 2/5. Consequently an appointment was made for a biopsy, but I wanted to delay it. I want to try alternative medecines BEFORE, just in case it works.
With with stopping TRP, metabolic treatment and artemisinin, my PSA has fallen to 1.3 and it is difficult for me to think that with so low a PSA I am in danger.
Hence my question.
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GabF
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Suggestion that you need Germline mutation testing is sound advice. With family history of PCa ..its even more valuable to do germline testing.I chose the company ..Color Genomics. They sent a kit and I had to spit saliva in a test tube and mail the kit back to them. Price was about $100 or so. Awaiting results.
It would have paid under certain circumstances? I've wondered how that works. I can't seem to interest my MO in running either genetic test or molecular test.
It would be paid for under your Medical Service plan if you were a Canadian like me- but alas, you would have to be a socialist like my 38 million fellow commies.
You can search for "high Gleason, low PSA" in the Health Unlocked search box to find men with this not-too-common-but-not-rare-either PCa. Or just do a Google search. Here's one study:
Yes, there are multiple men on this board who presented with high Gleason score and low PSA like you. My husband is one of them: Gleason 9 in all biopsy cores--80-100%--at dx with 3.38 PSA. Take a look at some of the postings, keeping in mind that they're anecdotal, like my husband's case. There aren't a whole lot of studies.
PSA trend and doubling time remain important, but stable PSA during treatment isn't a get-of-jail pass either. Scanning every six months instead of annually is advisable. Alway remind your oncologist of your high Gleason, low PSA presentation. One of our oncologists forgot and failed to order a scan during early Zytiga treatment. He was shocked when a later scan showed many mets despite low PSA.
My husband's Guardant 360 genetic test didn't show any markers that would be specifically treatable. But since you have first-degree relatives, get as much genetic information as you can so your treatment can possibly tailored to your type of cancer.
Spouse21 has given very logical advice. Based on "Low PSA-High Gleason" and clear cut family history..I would take it more seriously...Scans every 6 months and biomarkers every month will be my plan if I had this type of presentation.I would like to not only do PSA..but also Bone ALP, LDH, CRP, Albumin ,Hb, Chromogranin A at regular intervals to watch how this PCa is evolving . Also, Plant based, Anti Inflammatory Diet, Vit D and many useful herbs and spices can cause additional benefit ( besides medical treatment)
GabF....Abnormally high Neuron specific enolase and chromogranin A indicates that you are likely to have at least a part of your tumor as Neuroendocrine type. But, if your Lactate Dehydrogenase and Synaptophysin levels also come high, it will become more certain.However, to be 100% sure about NE variant , a biopsy of the tumor tissue is required.
Remember, its no all or none ...it only means that PART of the tumor might be neuroendocrine ...may be 20%, 40% or even more...can not tell at this time.
My PSA was only 0.8 when my my GP reported that my prostate was enlarged & there was a nodule.
PSA was only 3.0 before a Gleason 4+3 was diagnosed in 2004.
A PSA cutoff of 4.0 for biopsy is useful in that the hit rate is about 20%. For significantly lower PSAs, the hit rate would be too low to justify biopsy. However, the Gleason score distribution below 4.0 is much the same as for 4-10, as I recall. A low PSA in itself is not a sufficient reason to delay a biopsy IMO.
By all means incorporate supplements, diet & other lifestyle changes as complementary - but not alternative.
T level was about 5, but biodisponible [french word!] was so low at 0.55 that my endocrinologist didn't trust it. With TRT I had a significant increase of quality of live on every domain. Without TRT, I'm scared of the many trouble I'm far away now: less sexuality, less muscle mass, less strength bone and so on .
Thank you for this information I didn't knew !. Here, 50ng/dl is in the normal range, and it was not easy to find a physician for having a prescription.
The urologist that alert me after suspect MRI and wanted to immediately undergo biopsy, also gave me the same day a prescription for TRT. Until now, I was afraid, so I suspended TRT. I think I'll resume it.
There is some info about this situation. The low PSA is misleading since there are cancers with low PSA at diagnosis which have high Gleason, could have neuroendocrine characteristics and could be associated with high cancer specific mortality.
"my PSA has fallen to 1.3 and it is difficult for me to think that with so low a PSA I am in danger"
May be comforting for you to think (wish) that, but it's incorrect.
I had PSA checks as part of my annual exam every year. Always low. Cancer, G3+4, was uncovered after a TURP I had, hoping to cut down on my too frequent urination. Then my journey began.
Given your family history, I suggest you take the excellent advise herein. A 3T MRI and a biopsy are in order, as is a Decipher genome test on your tissue. ASAP.
You have to have a biopsy to see if there is really prostate cancer there. There are no supplements that you can take that will reverse it, although some will mask PSA. Avoidance can be dangerous.
Conclusions: Patients with Gleason 8-10 cancer and PSA levels of<4.0ng/ml have more aggressive disease than those with PSA levels of 4 to 9.9ng/ml; these low PSA cancers behave more like those with PSA levels of 10 to 19.9ng/ml. Further study is needed to evaluate potential biological differences in these patients with low PSA-producing cancers.
PSA production is normal job of prostate epithelial cells. When these cells become cancerous...they change and acquire criminal skills. ..than just being PSA producers.So, if someone has high PSA (mine was 830 at diagnosis) the cells are still more like regular guys...still doing their job as PSA producing workers. Means they are not too distorted and have not become "full time criminals"
The cells which are highly distorted and have become "extreme criminals" stop producing PSA and put all their energy into reproduction. Gleason 6 and 7 are in first category above and Gleason 8,9 and 10 are in second category mentioned above.
Then, there is 1% of all, who become like "deadly terrorists" ...these are Neuro-Endocrine type. With heavy, long term use of ADT, almost 20 to 30% of regular cancer transforms into Neuro-Endocrine type. These are called "treatment emergent neuroendocrine" tumors.
Our goal is to use all possible interventions such as medical treatments, anti cancer diet, herbs, spices, supplements and regular physical exercise and so forth...to launch a multipronged attack.
My husband was diagnosed with Gleason 9, stage 3 with a psa of 1.25. It was NOT neuroendocrine per Cleveland Clinic pathology, Mayo, and MD Anderson. The doctors all said psa is just one indicator, and many are diagnosed with low psa. Given the mri results, get the biopsy. That’s what confirmed my husband’s.
I'm low PSA and high Gleason. Dx in 1018. I had a full round of radiation concurrent with Lupron. Now maintaining with Casodex. I developed diabetes about 6 months ago, evidently triggered by the rapid testosterone drop. I have it under good control, A1C maintenaning around 6.0. PSA is holding at below 0.1 and testosterone is in the 250's up from 13. I'm told "no detectable cancer at this time." At 80 YO, I'm thinking I may have just beat the odds.
My Father who is 75 and diagnosed this year in May, Gleason 9 and metastasis to the bone, would tell you get the biopsy ASAP as he and his medical staff in the past had more of the wait and see method; and that was the wrong move unfortunately.
Yes, prostate cancer is so slow growing and new ideas all the time. My husband's PSA was 8. prior to biopsy and it had taken years to get there, then a week after the biopsy it shot to 17., then another week and it was 30. Doc says it's the velocity that matters.
It seems that his new diet is helping, a diet of no red meat, he eats chicken and fish, and no dairy (plant based butter, & cheese was invented at the right time!).
I was fortunate that my cardiologist tracked my PSA and saw movement to just over 2 and told me that I needed to go to a urologist who found a small tumor. Biopsy Gleason 9 (5+4). Think my long term survival was very much enhanced by finding it early and getting treatment immediately.
Like most replies I concur. Screen with biopsy now and monitor intensely with MRI or PET PSMA n future. I was Dx G5+4, pT3b in 2010, PSA 4.5. Adenocarcinoma only. Father died of PC. I am late stage.
Many thanks to everybody who answered, what supportive a forum !
I knew that low PSA high grade PCa are the worst, my urologist told me so: "it is a risk to die within 2 years". But I needed to see it written in authoritative papers. It took me several days do find it out, but one hour was enough to have the answer in this forum! And thanks to testimonials in the answers, the danger is no more an abstraction on research papers, but in my mind it has become something concrete that can be actually lived.
I understand very well what it is said in the answers. What will I do now ? I'll have a second MRI in January by the best expert here, the one who did the world premiere outpatient irreversible electroporation (Nanoknife), I'll follow her advice. Also I hope that in case I need treatment, she could offer me Nanoknife.
Why didn't I want biopsy ASAP after MRI ? I can't imagine me living with a long lasting disease. I'm afraid getting impotent, needing nappies like my brother, enduring every illness due to no testosterone (I know what it means ...). At 73, death is not so much a problem for me, it is normal that old people die, it is foolish to sacrifice the youth trying to keep old people from dying, as does every government nowadays. I find immoral to spend huge money for trying to live a few more months when your are as old as I. In a few words, live longer but in bad condition is not my choice.
So, before MRI, my brothers never having asked me to do PCa screening, I was able to live happy without worry, being confident in my low PSA; I happily bet that everything will be OK. But now, with a high suspect MRI, the happy bet is much more difficult, I'm no more worry-less, I've yet lost quality of live (worrying and stopping TRT). I though that after the biopsy, betting that is not so much a problem would be impossible.
Second reason, I wanted to give alternative medicine a try. I'm not foolish, I don't reject conventional medicine, but because of my GP telling me I'm not in a hurry, I though I had time for a trial. Don't know if it has any sense, because a trial without measurement is nonsense, and I found that, prior RP or equivalent, there are no means to follow progression or regression of PCa, except by monitoring PSA (not available for me as PSA is low) or by repeated biopsies. Perhaps my second MRI will show that there have been some progression or regression.
Why alternative medicine ? Because conventional medicine offers nothing for trying to cure BEFORE extremely hard treatment.
At 62, in 2009, I had Psa 6, and just over level docs are supposed to fully look for Pca, so I had biopsy and had a Gleason 9, 9/9 positive biopsy samples, and this was in-operable. So I had low Psa for the amount of Pca found and its stage of advance, so I was diagnosed about 4 years to late. Early spread was almost certain, but have been growing slowly and I have had much treatment to keep Pca under control with ADT plus add-on drugs, and chemo which did not work, and Lu177 that worked for 2 years, and now all my Pca is probably in bones but not treatable by Lu177 any more so I may need radium 223.
There is not much else.
Psa was 7 about a month back but now probably higher.
Its always possible I will have an avalanche of new countless mets that are impossible to treat, and that's when Pca wins the fight.
My big surprise is that there is no mean to monitor local PCa before treatment. It's a pity because it precludes any trial-and-error empiric method for finding out a novel treatment. For instance, I understood that PSMA-PET scan is no use at local stage.
I tried to use PHI index to monitor treatment, but for me, it is useless because PSA <2. I can't use CRP because it is yet very very low, as is NLR (Neurophile/Lymphocyte Ratio) which is about 1 while the cut-off is about 4.
Of course, every body found stupid my search of info when MRI and biopsy gives all the information. But for now on , NO TREATMENT is the option I prefer.
My PSA trajectory was 1.2 > 2.4 > 5.8 from 2003-2006. I was diagnosed in 2006 with Gleason 3+4, and still have PCa in spite of RP, IMRT twice, and Taxotere. I’m confident I had PCa when my PSA double from 1.2 to 2.4 in about a year.
There are cases where low PSA doesnt mean you dont have PCa. I think these are rare. My 2 cents is do blood tests frequently to see which way this is going. Check DHT and DHEA and Estradiol. If you do the biopsy make sure you are not on anything that looks like a hormone or antihormone. Also do a ploidy analysis.(complete Gene Evaluation, for Mutated Genes, and any accompanying, assays they can do, such as AR-V7 wild Mutations, and any capability for Programed Cell Death Markers. With 2 Brothers already having Pca--)Dont know anything about these tests or where they take you. I do know if you are diploidal its a very good thing and you may have a indolent PCa. Those lesions bother me. Lowering PSA usually means no cancer because cancer doesnt take a day off.
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