it’s been almost 3 years since i was diagnosed with a Gleason 8 prostate cancer, confined to the prostate. To date I have elected not to be treated but instead have been monitoring my PSA levels. Originally this was 6 now 15. I am 66 with no symptoms and no other health issues. I have declined treatment as I have yet to be convinced that the side effects and general uncertainties associated with surgery or radiation are worth it compared to not doing anything. Yes men die from PC but a lot die with it rather than from it.
Anyway I am interested in hearing from men who have also elected not to be treated and their thoughts on that decision.
Mark
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Reacher2023
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IMO and with your pathology you'll very likely die from prostate cancer not with it.I watched my dad die from pc went from 13 stone to skeletal in the last 2 years confined to bed for the last year he was lucky that the pain was well controlled, others are not that fortunate, do you want friends/relatives/spouse to see that notwithstanding the misery you'll endure.
Read my bio. My dad was constently being told, that it is an old men disease and old men die with it and not because of it. His Gleason was 4+3. He was treated with hormone therapy. 7 years latter and we are approaching the end of the road.
Do not fool around. Once it escapes, you will fight it for the rest of your life. Side effects will not be fun, but nothing compared to pain. Yours and your loved ones. Please do not fool around.
My dad didn't tell anyone about his symptoms, that was 1989, folk didn't know what we know now about PC he was old school thought it was just old man waterworks, ended up emergency ad mission cos he couldn't pee has it whipped out lasted another 15 yrs.Nowadays he mayhave been cured, brother's psa was elevated in 2012, diagnosed pc had 20 sessions EBRT, been fine since with no recurrence, apart from occasional slight mucous rectal discharge he's no SEs.
I wish my father would be given a chance of currative treatment. It hurst immensly that he could be cured, yet was not given a chance. In our health system (state health only) ageism is very common. I wonder how many men are killed the same way as my father, by putting them to hormone therapy when they should be given a currative treatment. Their only fault is, that they are over 70.
I wish you luck. Advanced PCa is serious and if you do nothing you will likely die in pain because of PCa.
Most guys die with PCa and not because of it... In general, those guys do not have advanced PCa and are often much older than you. Non advanced PCa at age 75 is much different than your situation.
I used to let the PSA go to 19 reading before going to ADT again to reduce it. Sure I had some nice holidays from the dreaded SE of Lupron,cassadex etc but I never could get it below the 1 reading.
I wish now I would have kept going with the ADT & kicked the beast out before it had a chance to spread. Once in your blood it can start anywhere in your body.
Probably the wrong forum to ask that question. Many here would have loved to have the chance you had, and may still have.
Wow. I respectfully submit that you are foolishly playing with fire. You might be turning a simple radiation or surgically cured cancer into a lifelong, a much shorter life at that, battle with drugs, chemo, and whatever else.
I had no symptoms beyond supposed BPH urinary issues with a low PSA of 1.0 and no indication of cancer at all, even from a biopsy of prostate tissue removed during a TURP.
And then 5 months later and still with a PSA of just 1.1, I had Gleason 4+4=8 cancer that had invaded most of the prostate, the seminal vesicles, the nuerovascular bundle, the bladder neck, the bladder itself, a lymph node, the pelvis bone, the sacrum bone, and 3 spinal discs.
For some of us, PSA is a very poor indicator of cancer progression. I hope you’re not one of that group. How do you know it’s not already broken out of the prostate and hasn’t spread to bones or lymph nodes? Are you getting PET scans or MRI for confirmation?
If you were GL6 I’d agree active surveillance was a good path, but AS for GL8 just seems foolhardy.
Another option for you would be a focal therapy - there is one called HIFU (high intensity focused ultrasound) that has very few side effects since it basically heats the tumor and hopefully destroys all the dangerous tissue. If your gleason 8 cancer is localized within one side of the gland, you could be a candidate. Stanford, UCSF and UCLA offer it on the West coast. The cure rate is not as high as it is for surgery or radiation, but it's a lot better than not doing anything at all! Also, it's possible to repeat the procedure if there is a recurrence within the prostate.
While Focal therapy is technically an option and might be curative in a narrow band of circumstances, there's really no reason in my opinion to consider it if the primary objective is to have the highest chance of your treatment being curative. Based on comments I've seen over the past two years, while I can't read a person's mind online, it seems the primary reasons for considering focal therapy was fear of the side-effects of surgery or radiation therapy. (I suppose cost could be another one.) When one is asked you can have less side effects and die 10 years sooner versus more side effects and eradicate the cancer or at least slow it much more, seems like a non-brainer.
I've never heard of any Urologist or Oncologist considered to be an expert at a Center of Excellence (large Universities, Cleveland Clinic, John Hopkins, Mayo Clinic) ever recommending focal therapy over robotic prostatectomy and/or radiotherapy. There's not a body of study results with enough convincing data (yet) that proves it to be as effective (on average) as the two primary therapies.
But I fully respect that it is ultimately up to the patient as to what they want to do. Not us and not the doctors.
I chose HIFU, but not focal. The surgeon recommended full gland HIFU ablation despite tumor activity in only one side. I think that is a more prudent and thorough treatment. I was a good candidate since I already had TURP surgery 10 years prior. I had that surgery in 2016. More than 7 years later, and free of ADT treatments I've had a good quality of life. My PSA has crept up to 2.8 but a pylarify scan this past September found no activity or metastasis. I am almost 74. I am open to receiving ADT or radiation if and when needed. BTW, I've posted recently that I was prescribed finesteride (ADT-lite?) but I had to stop it when it caused dental problems.
If your cancer is indeed still localized you have a chance at curative tx…..leave it alone and you will,most likely,die OF
Not with prostate cancer……once it goes metastatic it’s a whole new game and not a pleasant one. You may be symptom free now but that is not likely to last a whole lot longer……I ,initially,considered not treating my Gleason 8 PCA but after looking at the odds and the unpleasantness of the process of dying of PCA I decided to go with tx(radiation) but begged off the hormones……ultimately a mistake as what might have been curative left me with residual ca. I ended up on hormones anyway only 5 years later……
This will undoubtedly not be a popular post. But thankfully, this issue does not have to be either or - there is a middle way. I'm an ND who treats a small # of cancer patients of a broad variety. Prostate is one of the most common I see.
Some come to see me and don't want any conventional, some want support while doing conventional, and others want a bit of both. With all of them, I use off-label drugs and some supplements to block multiple cancer pathways. A great book to read about this approach is "How to starve cancer" by Jane Mclelland.
The approach often works - but is not 100% and can take some trial and error to find the approach that is effective. But often, we can see PSA dropping within a month or so.
Prostate cancer - especially gleason 8, is no joke. If you just let it be, you do risk ever growing symptoms that become quite debilitating. So doing nothing to my mind is being overly heedless and putting yourself @ risk.
As to your comment that many men die WITH prostate cancer that is a mis-characterization. That observation refers to men with BPH who eventually in their later years develop slow growing prostate cancer and die with it, not of it. But you have biopsy proven prostate cancer of a high grade. That is an altogether different animal.
If you either don't want to do conventional, or do some combination of conventional and alternative or 100% alternative - any of those options are better than crossing your fingers.
If you are skeptical of conventional, then look for someone near you who has some other ideas - AND has experience of several years. There are options, but you have to do some research if you are looking for alternatives.
Many of course would say I'm a quack - or anyone that doesn't see oncology as the end all and be all. That's their right of course. But that's just the way the world goes round.
Anyways, I'm mostly encouraging you to look for SOME legit help. And there are options outside conventional that can and often do work.
”A great book to read about this approach is "How to starve cancer" by Jane Mclelland.”
Before reading Mclelland’s book I suggest reading this article in which she and her claims are discussed extensively. Scroll down to Jane Mclelland’s Story section and enjoy:
Thanks for the question and guys, thank you for the replies. I am now 74, I had Radical 4 yrs ago and 2 years ago my psa started rising very slowly. The next step is radiation treatment that l have been offered, but so far declined. I get from your replies the fact that somewhere, probably in my pelvic floor are some cancer cells, if they get out and start travelling around, I will be in big trouble. I am ringing the consultant today and booking myself in, instead of sitting on the fence. May all of you out there take the opportunity while you can, rather than thinking, because its invisible it's ok, Graham.
Similar, 3+4 , RP 2021, slow low volume recurrence 2023 but 2 lesions outside pelvis and other suspicious spots lower left sacrum, no symptoms but did not want to risk so when PSA hit 2.2 started ADT. 73 May try radiation to MRI/PSMA locations to reduce burden for the future.
I’ve done the full deck of surgery, radiotherapy, chemo and ADT. Often the thought of the SEs are worse than what they actually are. The treatments are all designed to be doable. I’ve worked through most of my treatments and kept active. So for me the treatments are an easy trade to get rid of the cancer while you have the opportunity. For younger men who have been diagnosed with prostate cancer and who don’t get treated, I don’t think the phrase “will most likely die with prostate cancer” applies.
Wow, I wasn’t expecting the replies I got but thanks for the feedback. I appreciate the concerns expressed but I am not so sure that the faith some have in early treatment being curative in most cases is correct. Statistics I see indicate that up to 30% need further intensive treatment for extended periods which may not work and in the meantime around 30% of all who have treatment have long term life changing side effects.
I am having another PET PSMA scan to check and am awaiting genetic test results to see if there is a gene I have that research currently suggests may indicate my pc is of the more aggressive kind. I have a family history of cancers (not pc) so that will be of interest and may influence me.
Getting treated 3 years ago would have meant losing a career I love because I would have lost the required medical certificate and as I am still working and planning to do so for many years it’s a factor in my decision, stupid you might say but I prefer short term high quality life to endlessly dealing with serious side effects etc
I should explain that I am in Australia and we have in place voluntary assisted dying laws and excellent world leading free hospital and hospice care. I won’t be if it happens hanging out to the bitter painful end.
I was looking for comment from those who had elected not to have treatment but I guess I might have to start my own blog on this subject to see who is out there. I doubt that I am on my Pat Malone about this. (Forgive the Aussie slang).
You are probably asking this question on the wrong forum, most folks here are looking for treatment and by the time they get to Gleason 8 they will have already done something.You're right that there is often a 30% risk that a treatment fails, PC can be a slippery eel. You are also right that QOL is important and patients consequently get more of a say in their treatment as a result.
But to make an informed decision you need to know how much time you are buying and how much QOL you are trading off.
For most folks here Gleason 8, PSA 15 and age 66 is a no-brainer for having some kind of treatment treatment. You are in the danger zone, my friend.
Lol. As I said before, I chose Tulsa Pro Ultrasound over conventional treatments 3 years ago. Gleason 9, PSA was 9.6 December 2020. After, PSA was 1.25. And has gone up and down between 1.5 and 7(prostatitis). Very enlarged prostate as well. Even after Tulsa, it continues to grow. Finasteride dropped PSA to .7 from 5. Age 70 now. I can still do radiation if necessary. MRIs and PSMA'S have been clear but my doctor is deeply concerned regardless because I am a Gleason 9.
I'm Gleason 10 with PSA 14+ at almost 65yo in May 2015. Chose surgical castration + CRYOABLATION then a Opdivo+Keytruda+Yervoy injection (experimental 1st time used). Been on testosterone (Cypionate) injections (again experimental) since Jan. 2016 on a self directed BAT similar protocol. Still have 1/2 prostate so as PSA rises to 2+ng/ml I discontinue Testosterone which results in PSA<0.1 and begin again. 73+ now, had another *T* shot last Thursday with another next week and a PSA & Testosterone check followed shortly. Can have my *T* hit 1,600ng/dL following injection.
I get where you're coming from because I had something like the same thoughts when diagnosed in 2017 with prostate cancer biopsied at 4+3. In fact, I toyed with going the same route as you but was pressured by family and friends to get treatment, which I did (surgery at Johns Hopkins). And I'm glad that I did.
Here's the thing: if you were looking at 3+3 or maybe even 3+4 with PSAs in the low or mid-single digits, then deferring immediate treatment in favor of active surveillance could be a sensible option. But with 4+4 and a PSA of 15, as is the case with you: totally different story. Keep in mind, while you state the cancer is "organ-confined," that's something you can't possibly know.
It's true that treatment comes with potential side effects, but in the case of surgery at least (which honestly may not be your best option at this point), an experienced and expert surgeon makes all the difference. Three or four months after my operation, I was pretty much back to "normal" (with help from Cialis).
All this said, it's true -- and I did not sufficiently appreciate this -- that even if treatment appears to be a rousing success, as it was with me, you're still entering on a lifelong journey. Recurrence, especially with Gleason scores in the 8-10 range, is not at all uncommon. But in the end, even if you try to ignore the beast, you'll still find yourself face to face with it, one way or another.
Best of luck to you. It is your life...and your choice to make.
Why don't you try posting your initial question on Fight Prostate Cancer (a different hub of this platform) and see what response you get there...maybe much the same as the general thread here but worth a try seeing you're checking out options. Also be well worth your time to check out the latest podcast from Declan Murphy (from Peter MacCallum in Melbourne) at GU Cast as well (not the one I recently posted though that's definitely worth a look too).
66 is not that old or you must be in bad shape hoping you will die with and not from. If you can handle with this gambling and stress it can be ok for you. Treatments are may be heavy but if you are young and in good healthy conditions you get over easier. But we all get older.
If I understand you right: your psa-level has more than doubled fom 6 to 15. In Germany this is being considered as very dangerous since you habe a Gleason-Score of 8 = very agressive ! I strongly recommend to consider treatment, at least start with a PSMA-PET/CT ! so you know very you stand right now ! I am on ADT, my PSA-level has sunk to undetectable, I am very happy with that, since the side-effects are more than bearable ! DO SOMETHING !!
I'm one of those who elected to allow my PSA to rise during a four year vacation from ADT. It was partly an MO who didn't understand apc, and partly my own attempts to find alternative treatments. At PSA 39 three years ago, fortunately, I got an MO that put me on ADT injections every 3 months. I have to say I'm totally grateful to the new MO and I'm sure I will live many more years, whereas, without treatment, I couldn't think that way. Life is too precious to let it slip through your fingers. I'm now over 10 years with APC at age 77, 13 years since pc diagnosis, and I expect to live ten more at least.
Oh dear. As a minimalist approach look into HIFU, cryotherapy, or SBRT Cyberknife. Today.... Otherwise get the prostate snatcher in. Advanced prostate cancer is not pretty.
OK, here is something to consider.......look at the nomograms the highly esteemed Memorial Sloan Kettering cancer center here in the USA provides......
The first will show you your odds if you do nothing. The 2nd will show your odds if you agree to have RP, and nowadays we would expect radiation plus "short-term" ADT to provide similar results....... input your individual diagnostic/test data, and let us know the results for each scenario for you ? Did your care team there offer you such a comparison. There are several other well-known nomograms...let me know if you are interested, and I'll try to send you links for those also.
Since men here are almost uniformly suffering from the impact, both physical and mental, of metastatic disease, you can expect few men. wives, etc here to support your decision to do nothing. 70-80% of men diagnosed with PCa are "just" low or intermediate risk, and dying with, but not from, PCa would be much more likely. Using those provided nomograms, you can enter diffferent Gleason scores and see how that changes results!!!
Hello maley, these nomogram thing seem to be very interesting, however, I am not a candidate for two up here. Have you found any that applies for 'experienced' metastisized PC on ADT and prior radiology? If so, do you mind sharing the links to them. Thank you
There may be nomograms for that...but haven't spent time searching for them. Most of what I have read would indicate a life expectancy in the 2-5 yr range for your metastatic state......it is unpredictable for any one individual, as you know...all studies nomograms are just probabilistic in nature.....still, better than nothing when decisions need to be made. Have you directly asked your MO for such data?
I have to say doing nothing at all is not a wise option, some choose to try alt treatments at first and had success . I put out a few posts and comments on what things I'm taking. Like Fenben, DCA, Ivermectin, Bovine Lactoferrin, curcumin, Pao Pereira, Zeolite Tudca etc. But most critical is to research all these alt treatments before doing anything that includes conventional treatments. For me doing nothing was never an option with everything that goes on in my life , Including my PC. For me the first action I took was Diet changes, I gave away and threw out anything with sugar or fructose, pasta, and more. Now only one full meal a day and it's 80% veg cold water fish, lean grnd chicken, tofu. I do have to take a bit of fat avocado / olive oil with my Fenben. Research and gather info and make Dietary changes should be your first consideration at the very least Being already diagnosed you more than lkely were referred to an onco dr. if so you know that path or option. Get started , everyone here will be supportive .
Hi, I was diagnosed with Gleason 9 T2 Localized. No symptoms as well but an evident tumour. Had 25 EBRT visits then 1 HDR Brachytherapy. On hormone therapy for another year. Yes some side effect but hardly any. Ok lost testosterone and libido but everything still working. Did a 43 minute 10k and now around 46 minute. So no real side effects. Do yourself and friends/family by getting treated. Dont wait. Just do it as they say..of course everybodies case unique and i totally understand not treating when you have no symptoms which was the same for me. But i feared not doing anything then having the thing develop and spread more...Take care
Probably stating the obvious: you chose to wait because of potential side effects. As you can see from the posts here, the side effects can vary greatly. I reacted horribly to ADT but not everyone does. If you decide to get treatment now, your treatment will not be pretty, as it were; regardless of radiation or surgery and...oh, toss in ADT for good measure. So, the very things you were trying to avoid - the side effects - will now likely be worse. Good luck to you and seek treatment.
The thing is, everyone comes into this particular forum for treatment advice. So it stands to reason that everyone here has opted for treatment in one form or another. So this is not going to be a random sample of everyone diagnosed with PC. Perhaps, you would have a more sympathetic response in a Christian Science PC forum.
My response was sincere. Your response is aggressive. Reacher2023 is making a reasonable choice. He is choosing QOL over longevity. He doesn’t want to deal with the side effects of treatment. Who’s to say he’s wrong? He’s just not going to get anyone to agree with him in this particular forum.
Here's a thread from someone five years ago who asked the same question. This person never reported back on how it went, so there's no follow-up. Maybe he'll check in if he's still alive and following this site. Try private messaging him in case he's still alive. If you stick with your decision not to treat, it would be helpful for everyone here to know how you're doing as you go along whether you get treatment or not.
Someone responding to a similar post about not getting treated said:
I don't know where some men get this crazy idea that having uncontrolled cancer eating away at your bones and internal organs is preferable to treatment side effects.
I forgot to copy the thread link where the quotation comes from, so I don't have any follow up from a second thread about not getting treated.
As others have pointed out, men and their caregivers who come to this site are searching for treatments. It's very rare, and interesting, when someone solicits opinions about not getting any treatment, so I hope you'll check in.
I too have spent some time where you are now but eventually understood my failure of logical thinking & got treatment (see my profile). I've heard this kind of thinking described as that of the Thanksgiving turkey.
Hi Reacher . I was operated 2002 and prostate removed . My PSA than was 7.3 and for five years after it was -0 . Than it showed up again and it hasn't stopped going up since . Over the years I had many scanners done and they didn't show anything . The PSA kept going up and the doctors kept telling me not to worry too much about it since many years have past since the operation . So I didn't and life went on . Well in 2020 I had COVID-19 AND ALMOST DIED . Slowly things got better and here I am living proof that you can never trust any doctors 100% ! A month ago I had my PSA tested again and didn't expect to see that it now was 109 .9 . The doctor also was shocked and right way he sent me for PET scan which i did right way. Guess what ? My cancer is back in the bed of the prostate and tomorrow I am going to the hospital so that the doctors can see what treatment we should take . Now I am very worried because now it is CHEMO, HORMON OR RADIATION ! All of them are something I didn't want to deal with! Good luck and take care on time if you ask me .
Ill give you the short version. I did AS for 5 years. Thought w diet and exercise i could beat it. Morphed from a 3+3 to a 4+3. The tumor grew to the edge of my prostate. I chose proton radiation. Did 39 treatments. Six years later I was told ‘a couple of cells got out’. No cancer in my prostate but cancer now in my lymph nodes. Metastatic. Dont fool around w this. Make a decision….I wish I had.
My situation was similar to yours: At age 67 Gleason 4+4 apparently confined to prostate, PSA 8, not even palpable by an experienced urologist. I chose surgery. Surprise! positive lymph nodes! followed by later appearance of bone mets in spite of treatments galore. But I'm alive and feeling reasonably well today 8 years later. Playing with my grandchildren, enjoying a beer, coffee, friends, life. I am pretty sure I'd be dead if I hadn't chosen treatment.
My story shows that you do not know that your cancer is confined to the prostate. I'm glad I took treatment. Only you can choose your own course.
”…stupid you might say but I prefer short term high quality life to endlessly dealing with serious side effects etc.”
I’m 61, relatively young compared to most in the group. I used to think I’d be okay dying young, until I got the bad news of having metastatic PCa and saw the statistics for my level of disease say I’ll be checking out before I reach your (also relatively young) age of 66. It’s easy to say you’re ready to die when you don’t really believe it’s imminent. Looking down the barrel of that gun it becomes another story.
Like you, I’m less inclined to chase down every treatment trying to eek out another six months, but having experienced the bone pain of metastasis to my hip and spine, I’ll say the short term side effects of surgery or radiation would have been far preferable. I wish I’d had that choice and learned of my cancer before it spread and became incurable.
You should probably go to an Active Surveillance oriented forum to get the kind of input you’re seeking. There’s one here at Health Unlocked, and also on Reddit.
I was diagnosed with PC in September 2020. Gleason 5+4. PSA 7.6. Extremely enlarged prostate - over 100- 4 times normal size. I had one lesion 14mm x 4mm. I was told I was Extremely high risk and no matter what I did it was not curable just because I was a Gleason 9. I did All the genetic testing plus a decipher test. All my genes were either negative or minimal risk. No BRCA risk period. I was given no more than 5 years to live if I did nothing . I was given a chance of 8 to 10 years if I did removal and/ or ADT and radiation but Quality of life would most likely suffer from ED, incontinence, Radiation cystitis, and finally chemo in the last few years of life. I chose Tulsa Pro Ultrasound and was told by one doctor that Tulsa was a joke and I would still die in 5 years or so. It is now 3 years since Tulsa. No growth or spread at this point. My PSA has been between 3 and 5. I started finasteride for my still growing prostate. PSA is now .7( point 7) . PSMA And MRIs show noting at this point. I am not cured and any doctor that tells you they can cure you might seem suspicious to me. We are all on our own journey. Do your homework and choose your path. Fight on brothers!!!
My PSA is rising 9 years after surgery for my G4+5=9 PCa. Positive margins, so RT, and ADT. My QoL on ADT was terrible; I hated being alive. (Most men are not nearly as miserable as I was.)
But even I will do something when my PSA hits 1.0 or the doubling time goes under 6 months.
I agree with the others that you're running a huge risk of a terrible death.
Your situation can change very quickly. I was in Africa with my dad last year on a trip and 5 months later he died. Things went downhill so quickly with an aggressive cancer. It was not pretty. He would have done anything to live longer. You have options many men here would love to have had.
I understand your thinking. I’m all about freedom of choice and if you choose to continue the same path getting a MRI of the groin area every 6 month would measure the diameter of the tumor and you can continue the same path or consider more advanced treatments. Good luck on the path ahead. Please keep us informed going forward.
Hello Reacher2023. I also a Gleason 8, diagnosed 5 years ago. After 3 years of ADT, I decided to take a vacatión - 2 years so far during which my PSA has climbed from point 17 to 1.7. I work out 1 1/2 hours 6 days a week and feel good. My MO just decíded on another 6 months of vacatión. I am 78 and do not fear death, so I am feeling quite tranquil in the face of my unknown destiny, a bit in wonder at some of my brothers who panic at the slightest rise in PSA. God is good. I pray for us all.
The guys that fear the psa rise don’t have a prostate. Makes sense. Still have your prostate like me a little rise happened with T level going up. Big rise may not panic me but wouldn’t make me happy.
This is second hand reporting but my husband chose to watch and wait after he was diagnosed at the age of 65. He wasn’t ready to give up his sex life or possibly become incontinent. Six years later he began having horrible pain around his ribcage and back; the PCa had metastasized to almost all his bones. He’s gone through Docetaxal, Eligard, Abiraterone, Cabazitaxal, and now nine years later, he is in hospice. His last option, Pluvicto is off the table because of a compression fracture of a vertebrae causing paralysis. He is now 74, wheelchair bound, has a Foley catheter and sleeping in a hospital bed here at home. I am his full time caregiver.
He’s not the type of person to dwell on choices he made in the past because he says it would eat him up. He accepts his circumstance, doesn’t like it but accepts it. Of course, I would love to have him around for a lot longer but how much longer that will be, no one knows.
With Gleason 8 and PSA of 15, you are probably already metastatic. The cancer send out seeds that lie there, undetectable, until they raise their ugly head. You need treatment now to keep them as small as possible for as long as possible. My PSA was 17 and I have cancer in my bones. 5.5 years later on ADT and I am still here.
Hi Mark, I was diagnosed in 2016 with prostate cancer and decided to go on alternative treatments, intravenous vitamin C and went to a full began diet, I was doing well for several year monitoring my PSA in 2020 got in financial stress and my PSA went up non stop. 2022 started with extreme pain in my body ended up in hospital and had chemotherapeutic treatment and Lupron every 3 month shot, ok for a few months, 2023 in August stayers with pain in my left leg, now having major difficulties walking. If I could go back in time I would take my prostate out !!!
I elected to be treated so can't help you there...but there's a point you should maybe consider? Biopsies can miss like ~20%-30% of PC within the prostate. So, perhaps, you have more or a higher grade PC that you are not aware of?? Good luck on your decision.
Check out mossreport.com and pcri.com for articles on treatments and options; both medical and alternative medicine. Procedures such as cryoablation and hyperthemal treatments have had some good results without the side effects. Also, supplements such as modified citrus pectin and a healthier diet can slow the progress. I am a 4+3 and just completing my radiation therapy and HDR Brachytherapy. I'm 62 qnd they are saying it could buy me 10 years or more. Without treatment my prognosis was 2 years.
You're an Aussie? Check out this book, To Pat a Shark by another Aussie, Jim Baker. It's the story of his journey with APC. It's a great read! You are Patting a Shark!
You probably won't find anyone who had Gleason 8 and had no treatment, because none of them survived very long. The only two guys in one of my support groups who elected no treatments both died from prostate cancer.
Whoever brain-washed you about how terrible side effects are from standard treatments doesn't know what they are talking about. If you have a doctor who has experience doing a treatment on several hundred patients then your side effects will most likely be minimal.
When I had my prostatectomy many years ago, my hospital roommate was dying from prostate cancer that had been diagnosed too late. That Gleason 8 diagnosis you got was a gift to help you beat the disease. If you don't fight your disease, it most certainly will kill you.
By the way, guys who wait until they "have symptoms" usually die from the disease.
Sorry if I am too blunt, but your approach is deadly.
Do you have an MRI or PSMA/PET scan showing you its still confined?
I was diagnosed with Gleason 8 PCA in 2009. I had robotic prostatectomy and my PSA was undetectable for the first seven years before it started to rise very slowly. I had IMRT to the prostate bed in 2021 that did not lower the PSA. Today my PSA is 0.75. I will most likely start ADT once i finish treatment for bladder cancer. That is almost 15 years of painless living. Had i not treated the PCA i suspect I will be either dead or in a lot of pain.
I was diagnosed 3+3 Gleason 23 years ago. I decided not to have treatment. My plan was not active surveillance but just hoped to die of something else. I used various supplements and things were looking ok until Covid. Psa started to double rapidly and peaked at 5664. Mets in bones and lungs. I am on lupron and abiraterone and doing well. SE’s very tolerable for a 73 year old guy. No libido which is ok now but when diagnosed at 50, totally unacceptable. Some will say I am crazy to throw away a chance at being cured. Well that’s the problem, it was only a 65% chance at that time. Would I do it over if I had the chance knowing the outcome. You are damn right I would. Why, because this forum is loaded with guys that did the SOC and ended up here anyway. Just recently a guy told the story of his 12 year battle with Pca. 3+3 Gleason. Surgery, then radiation and now here exactly where I am. He got here in 12 years with SOC and it took me 23 years. I tell nobody to take treatment or not because it was the hardest decision I ever had to make and I’ll not make it for anyone else. My issue was quality of life. Funny, when I went to see my oncologist for the first time his comment was “23 years, that’s a heck of a run, well we’ll see if we can’t add another 15 to that”. Best of luck my friend and may God bless.
Hi, seems like from the 80 something replies to your post, most of them didn't read the last paragraph from your post, and just rushed to reply. Some more aggressive than others, apparently all of them currently on a treatment. I was more or less on your same situation when I got first diagnosed. My Gleason Score was 4+3 after biopsy (as far as I understand, the only way to get it) Urologist referred me to MO and he put me on ADT Lupron for two years , and made me get 38 sessions of radiotherapy. We stopped ADT due to out of our control events -read lack of medicine- PSA never went below 1. Two years later, started seeing a new MO, PSA had climbed at 16. Went back on ADT , PET Scan showed metastasis with tumors all over my body. I refused Chemo but did about two months of Abiraterone plus Prednisone. I just Couldn't deal with the horrendous side effects. So for now, I am only on Lupron injection every three months, even though the menopause like-side effects just won't go away. I am now 50 pounds overweight, no matter how much exercising or eating habits changed.
I just turned 60 years old, I am single and live by myself all of my dear family live abroad. I cannot afford to get disabled and or to eventually go back to my family and become a burden for them. All I want is to be functional until I start going down the drain, and then I will just go straight to hospice care and pain management. I am not afraid of dying.
I forget, radiology left me incontinent. Enough said.
My oldest and youngest daughter’s married brothers. Their father was diagnosed with late stage 4, metastatic throughout his body. He chose to do nothing. He had lost his wife two years before and never got over it. He kept saying he couldn’t wait to see her. It was horrible watching him wither away on pain meds. I believe his two sons suffered as much mentally as he did physically. I don’t know which is worse. The pain of dying or the mental pain of watching a loved one die.
Hi everyone and thanks for the replies. Did not expect so many. Here are some updates and responses to the advice received.
First an update, my very latest PSA shows a drop from 15 to 14! I know just a blip and the pessimistic out there will say the next will be far higher. But I am a glass half type of guy so I am pleased.
More importantly I will have another PET PSMA in the next few weeks to see if it has advanced beyond the prostate. I will let everyone know.
I found some of the replies amusing especially the reference to thinking like a Thanksgiving turkey and the suggestion about the Christian Science group.
Whilst I appreciate the thoughts re praying I won’t be going down that route as a dedicated life long atheist. Once your dead there is nothing after that but everyone has their own views about believing in a mythical being.
A lot of replies talked about the pain of advanced cancer and I have seen how 2 siblings who died from untreatable cancer (not PC) dealt with it. In Australia we have an excellent free hospice service and we now have in all states voluntary assisted dying legislation which I can use if needed. So thanks for the advice but I have worked out how to deal with that.
Given my family’s history with cancer I have organised genetic tests and am awaiting the results so a sensible discussion can be had with my children. If the tests indicate there are faults in genes associated with a more aggressive form of PC then maybe that is the trigger for treatment eg BCRA2 and others.
Others have suggested that the side effects are not as bad as I suspect. It’s true some guys are fortunate in that area but it is a fact that many do suffer from life long serious side effects and it’s a trade off between quality of life v the possibility of a cure. I say possibility because it’s also a fact that around 30% of guys treated will experience a recurrence of PC which is usually even more difficult to treat successfully. So for those who say PC in its early stages is curable I would say it’s definitely not the case for everyone. Again it’s a trade off.
I am not someone who either rejects western medicine or believes in alternative treatments to the exclusion of mainstream treatments but I do believe in evaluating the evidence, listening to the experts but at the end of the day making my own mind up. Not a trait appreciated by at least one of the specialists I have dealt with. Being presented with an appointment for immediate surgery was never going to work with me for instance.
So I am still thinking about the next steps and maybe I will get treated in 2024. We will see.
Thanks again everyone for the replies and advice and thoughts. Good luck and best wishes to those dealing with it all.
How do you know that your cancer is "prostate confined" without pathology? Clinical dx and pathology can be quite different.
My husband's 2020 biopsy (clinical dx) indicated Gleason 3+4; PSA 7 (PSA 7 at biopsy, but we understand, now, was much higher as a result of the BPH medication he was taking, which lowers PSA value). Upon receiving the initial, clinical, cancer dx, he obtained multiple opinions regarding treatment and ultimately elected RP surgery.
Base on clinical dx, his surgeon stated <5% chance that the cancer had escaped the prostate. Post-surgery pathology report showed much worse: Gleason 4+3; seminal vesicle invasion; 1 of 12 lymph nodes removed was confirmed cancerous. In other words, HIGH RISK, stage IV cancer (T3bN1M0).
I wish you the best as you determine how you will treat your prostate cancer.
In Australia after a MRI and biopsy the normal approach is to have a PSMA PET scan to determine if the cancer has spread. It’s very accurate. I will be having another one shortly as in Australia it’s seen as a better approach than numerous biopsies.
To quote “The PSMA PET scan is a new type of imaging test that can help doctors learn whether prostate cancer has spread.
Researchers have found this scan may be more accurate than conventional testing approaches for diagnosing metastatic prostate cancer.”
happy new year to everyone. To those who asked re how do I know that the cancer is still confined to the prostate after 3 years of declining treatment, the answer is it still is as determined by a recent PET PSMA scan.
Still waiting for genetic testing results to see if there is an errant BCRA or other gene causing issues before deciding whether to finally go for treatment. Considering SBRT or the fancier Cyberknive. Any have any experience or thoughts on whether Cyberknife is worth going for?
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