hello - new to here- i am 52 yr old - diagnosed with stage 3 aggressive prostate cancer - gleason 9 !!-- all 12 modulars full - was a 10 hour surgery - surgeon said was largest prostate he ever saw and removed - this was quite a shock after biopsy - could barley walk before surgery april 13th this year- they did the best they could PSA was .02, 3 months after recovery - i just finished 8 weeks radiation with lupa ( hormone ) shot- then told to wait until january 3 months for next accurate PSA test ------ i went to get 2nd opinion from medical oncologist who said " do not wait " get done now- wants to see PSA every month going into jan/feb- finally a Dr with a sense of " urgency " that i always wanted - my 1st test result psa .01 - so its low which was expected - but still scared crapless !!! been a rough year - will do every month hoping for a zero score- but i know its ALL about when it comes back - and where-
any advise ?? all my cancer group meetings are with 65-75 yr olds with Gleason 7 and told they really dont need to be treated as much -
any help ? someone just told me to get PEt scan - not sure why this was never done ?
sincery
G
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GMAN2667
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Hi G - my husband has had several PET scans. If your insurance will allow - go for it! My husband is 60 , Gleason 8 at diagnosis. He is progressing fast and we are having trouble getting the cancer under control. Prayers up for you and your family!
Hey GMAN - I was Gleason 8 intraductal and my dechpier score was .92. Had RP in 2017 with 38 radiation treatments. Very fortunate am undetectable but one never knows. My only suggestion is - in six months or so when things settle down, I would try to find an ultra-sensitive assay. <.01 is a great start. I believe there are tests that measure to four level of precision. When I used to read every study could find, I remember one it suggested that if after a certain period (not sure what it is but something like 6 months to a year) being undetectable at, say <.0009 it portends statistically significant good outcomes. Also depends on type you have. Intraductal is more aggressive so type also factors in. Best wishes.
Your first doctor was right. Radiation kills prostate cancer cells and their PSA is dumped into the blood. So you have to wait for a while (usually 3 months) to see if it worked. You also have to wait for your testosterone to get restored. Medical oncologists often do not understand this.
You should have gotten a bone scan/CT when you got your StageT3 diagnosis.
I know that waiting without doing something only increases your anxiety. But there are no other tests or treatments you should be having right now.
The fact you’re not stage # 4 is big time in your favor. It sounds like a knarly surg? Damm . Mine was exposed with pc tumors so no surg for men. Im over six years into this mess. Back then I was 53 and the youngest by 20 yrs for my cohorts in Rt for 8 weeks. I went the naturalpathic route and I’m still on it today ( nutrition and diet) my dad had pc but I figured my diet was bad. Sad in fact . Six years of spouts. Live healthier than before young man . May you receive healing and be done with pc for good! Don’t predict gloom and doom nor a return on yourself . Self image that pc leaving your body for good! Take care . Scott
Hello GMAN - I am 59 years, diagnosed one year ago with Gleason 9, High Grade, High Volume, High Risk, Stage 3. Bone scan was negative, PSMA negative for mets. I decided on a trial treatment program at NIH for a 6-month ADT combo therapy and then had a RP. I had the RP in July this year. It was fully consumed with cancer and a bulging tumor resting against he bladder; so they removed a small section of the bladder to be safe. Negative margins in post operative pathology, including nodes, EXCEPT for rare, single cancers cells found on top of the rectum where the prostate rests. The team of doctors and research scientist I met with post op advised that recent studies have shown that there is no difference in adjuvant or salvage radiation following RP. They also advised to wait and "save" the radiation treatment for when I actually may need it...if I need it. I saw the team in September and they advised to have PSA checked every three months. Nothing else. I am a little sketchy about being in stand-by and not proactive about the remaining "rare, single cells" but they advised this is best. I pray it is not just because they do not want me to interfere with the ADT trial study. BTW - My PSA was 5.4 and the prostate was not enlarged at the time of diagnosis.
Your case sounds a lot like mine. In 2013 I had 6 of 12 cores positive, all G9, some 100%, some 5+4, and MRI said it was bulging and appeared locally advanced. PSA was 5.2, so the severity of the case was quite a surprise. However, G9 doesn't make much PSA per volume, so PSA isn't necessarily a good indicator for that type.
I went with IGRT(79.2Gy, with 54Gy to pelvic lymph nodes)/ADT2 (3 years Lupron and Casodex). It's nerve wracking when you are in a wait-and-see mode, for sure. The thought that helped me was simply deciding, declaring, that I'm ok until I'm not ok. In other words, as far as I know at the moment I'm fine. So, I'm fine. Maybe later some new information may change that, and we'll deal with it then.
We don't want to lose the joy of today worrying about tomorrow. Easy to say, sometimes hard to do.
PSA at .01 and .02ng are still very low and as noted waiting for another test is the best thing to do, anxiety associated with the waiting and anticipation aside!
IMO, Do NOT look for an ultra-sensitive PSA test as it provides no useful diagnostics and only adds to the anxiety when you see that third digit move around. Many Doctors regard it as noise and is why they don't use it.
Again, waiting sounds crazy, but you've done both curative treatment lines and need to see the fruit of your labor, and although testing every month is nice to "see" what's happening, like the ultra sensitive PSA testing, not sure exactly what useful diagnostics it will provide.
It may be hard to do it, and it's certainly hard to get the brain to agree, but the need to relax, to breathe and understand that you have the ability to control the disease going forward is important. Yes, timing is critical in some instances, but there's really no need with the exception of a very small patient cohort that prescribes "immediate" action is required! I don't believe you fit into that group, of course my opinion only and I'm not a doctor.
But timing is important (for diagnosis) in regard to if the PSA continues to climb and doesn't level off, even the most sensitive tests available for you, are a ways off... Meaning a PSA of at least 0.5ng in order for it (G68-PSMA-PET) to be at it's sensitivity threshold that's useful is required.
So breathe, do what you do, live and don't constantly think about it all, don't drag chains or anchors, it gets heavy! And when you do let the stuff slip into conscious thought, push it aside, reserve time to think about it, but mentally regulate it. It can control you, if you let it, it can consume lots of time and become a heavy weight. But that is borne out of Fear and "Fear" is a manifestation of the mind... Fear does not exist otherwise and is a nerve impulse fight/flight reaction to a stimulus. I only mention this because your OP appears to present what probably we all go through or have gone through when diagnosed and or progressed.
Just deal with the facts, don't get caught up in "what if's"... Wait, yes, wait, until the disease presents itself in a manner that is and can be, diagnosed as accurately as possible, that will then offer a clear path to what might be the best option to take. That option should reflect what you want to obtain from the treatment as this is different for everyone. Some value Mortality over Morbidity, or vice/versa, like the disease itself, is different for everyone.
Lastly, of course the standard recommendation to make sure you're at a Major Cancer Center and one of Excellence! It is there that you'll get the best of everything, doctors, the teams providing your care, access to treatment and studies if necessary, etc. Travel if necessary, don't skimp! There was actually a study that showed those doctors with the most experience resulted in the best statistical performance by their patients.
Being diagnosed with prostate cancer (or any cancer) is quite a shock to the system. So, hang in there and don't panic. First of all, you should know that I was diagnosed 9+ years ago with a PSA in the 40s and rising fairly quickly, along with a Gleason 9. And, it had already spread to 2 vertebrae, a lymph node, possibly 2 ribs, and a large tumor in my hip. I am still around and still responding to treatment. Secondly, I have been on this site for a few years, and am telling you that Tall_Allen is EXTREMELY well-informed and all of his info is science-based. So, if he says there's no reason to get any tests now, then that's the case. However- perhaps you should get the scan Tall_Allen indicated some surprise at you not having gotten already. I continue to respond to Lupron and Abiraterone and hope to for many years to come. I hope you have a strong positive response to treatment too.
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