Hello! My father (61) was diagnosed with prostate cahcer in August with PSA 13 and Gleason 7.... - we are in Boston - he couldn't be seen for several months - had his prostate removed about 6 weeks ago - surgeon and pathologist thought they got it all, told us they took out an extra lymph to be safe but felt they got all of the cancer.
Gleason score updated to 9 post removal. Not good. Then today his PSA came back 7, 6 weeks post surgery. Obviously a bad sign but have no idea what's going on and doctor offered very little explanation - there are obviously cancer cells still in his body but his bone scan came back negative and they did get all of it per the pathology report.... Could the prostate cancer cells have traveled elsewhere in his body in 3 months? Or could there just be cancer cells left in that area despite the pathology report saying otherwise? Or could the cancer have originated elsewhere and spread to his prostate? He is going for the PET scan asap per his doctor (I wish he had done it prior to surgery now). It's only been 6 weeks post his surgery but a psa of 7 post prostate removal seems terrifying and like a really bad sign... So many unknowns and just desperate for answers/hoping he's taking the right course of action... if you've read this long
- thank you - and appreciate any advice you
have / if anyone has ever been in a similar situation 🙏🏼🤞🏼
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Ccullen91011
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unfortunately he decided to do surgery prior to psma pet because the bone scan done in September was clear and at that time it was Gleason 7 (upgraded to 9 post surgery) . I’m so scared it’s mestestized to his bones in the last several months. Do you think that would be possible? Thank you so so much 🙏🏼
If it happened, it may have been years ago. It generally takes a very long time for metastases to occur. Most likely, there is cancer in the prostate bed and/or pelvic lymph nodes that can be cured with salvage radiation + hormone therapy, as I said.
Thank you so much for insight. Yeah his bone scan was clear from what he told me when it was done several months back so 🤞🏼 think it’s just scary how high the psa stil is post. Thank you so much! Can’t even say how grateful I am so far for this community
Bone scan early Sept clear. They ran it twice when I was there. Psa was 13 pre op Gleason 4+3, post op 4+5 psa 7.8 at 5 weeks, pathology all clear margins on cancer and left and right lymph notes, dr feel it may have spread through seminal vesicle but not sure. Going to spend all day Mon getting into PT scan earlier and booking medical oncologist appt and various treatment. Already talk with Mass Gen scheduler and could not get psma pet earlier than 1/24
Suggest you wait for the PET scan results. That will dictate whether your next move should be a meeting with a radiation oncologist or a medical oncologist.
He was told his bone scans were clear … and he did have mri of prostate area (?) but only showed within prostate (didn’t do full body)…. Could that make sense that the bone scans could be read to him as clear without any other tests beside local mri done? I just want to make sure he’s not getting false info
Sorry so many questions . I’m probably misunderstanding - my dad told me: I had a bone scan, no CT - could that even make sense? They expedited bone scan when he was Diagnosed because his back hurt …. But at this point they did think contained to prostate from my understanding …. But only did bone scan from back hurting . He was told it was “clear”
Retest PSA with a different lab asap. Lab errors happen. You wrote: "...his PSA came back 7, ....". Labs report PSA to, at least, one decimal place. For a round "7" you either trancated the decimal part or it was reported as 7.0 which is kind of "fishy" having only a 10% probability of being intentional. This makes me suspicious of a reporting error.
FYI, "persistent PSA" (this is how is called if not close to zero post RP) has been reported here up to 0.6. Let's hope that your dad couldn't reach his reading glasses and a decimal point separator preceding 7 slipped his attention. 7.anything is too high.
Sorry to hear about your dad. He’s probably going to need salvage radiation and some hormone therapy. I’m surprised there was no PSMA PET before the surgery. You said you were in Boston. I don’t know what your dad’s situation is, but perhaps you could seek treatment at Sloan Kettering in NY. They have locations in Westchester, so about a 5 hour trip, but it may be worth it. You will get the best treatment.
Petscan will show where the cancer is now but if prostate has been removed and the PSA has gone up I would be of mind that it has spread. I had my prostate out March 2021 I also did not have a Petscan before although I was told I could have it.I think COVID had put paid to that as our hospital was overrun with COVID, I only had a PSA score of 7 with a gleeson score of 3/4 after operation lab reported one lymph node of the four that was removed had cancer in it and they rescored gleeson to 4/3 which apparently is normal. Had Petscan can back I had cancer in 15 lymph nodes with now a PSA of 11. Put on two weeks hormone tablets then three month ADA injection and Enzatutamide (Xtandi) which I have been on for 28 months, please don't despair there is no guarantee that having a Petscan before removing prostate would have helped if they found the cancer was already out they still would have had to treat it and it probably would not be curable just like me manageable. The benefit of having the prostate out is the organ generating the cancer has been removed which there are trials on doing this as normal practice so he like me could be ahead of the game, I would suggest if it is bad new get him in enzatutamide, eating well and remove red meat plus alcohol, red wine is ok. Exercise is a must, I swim six days a week. Good luck
If it has spread- there are still many treatment options. Has he seen an oncologist or was his surgery done by a urologist? If he hasn't seen an oncologist I'd find one at one if the great centers in Boston- I know Dana Farber is mentioned in this group often. Find an oncologist that specializes in prostate cancer. Completely anecdotal- but I read on here often that men have only seen a urologist and urologists aren't cancer specialists so just putting that out there. My husband is Gleason 9 with spread to bones at diagnosis in 2017. He's doing well- so keep lots of hope!
sorry to hear - similar to my experience where I had PSA 4 after what was deemed “successful” surgery and a starting PSA of 11 Gleason 7. They called it recurrent and that was 5 years ago.
There are still lots of options. You may want to explore an advanced PSMA scan to see if there are any specific spots, and likely salvage radiation with a period of ADT and an advanced anti androgen. Treatment intensification has usually performed best in trials. This site has lots of good info.
It was a long journey -- I initially completed radiation in 2019 and 18 months of ADT with Zytiga and thought it was all behind me. PSA had gone undetectable, but not too long after I finished everything my testosterone came back and so did low-volume but fast-growing PSA. At this point I went again for intensive treatment and completed focal radiation on suspect hot spots, 6 months chemo, and a year of ADT + darolutamide.
It wasn't fun, but it wasn't the worst either - just tired, down at times, etc. Finished all that last April. My T is back and PSA remains undetectable so I'm feeling great, no lasting side effects, and hoping this time I get luckier and it's behind me for good. Still, I try to be realistic and expect that it will come back again in time and that I'll need to go through another round of treatment some day. Good news is that there are lots of developments and new treatments coming all the time, so the longer you kick it down the better.
You are presently in a panic mode..... which all of us have experienced at one time or another.....There are many arrows in your quiver that your dear dad and the M.O. can use to fight the beast. Take a very deep breath and sail straight ahead. Your Dad will be around for many many years, so enjoy each other and try to laugh....
last question here!! Does anyone know - are bone scans generally accurate? I’m thinking he should have his results read by multiple doctors but I’m not sure if that’s how the scan even works
Bone scans show areas of uptake of a radioactive substance. It does not specify cancer only abnormalities. Arthritis will show an uptake as well. I had a Psa of 5664 and my bone scans lit up like a Christmas tree. MO showed me my previous scans as well as my latest and I just sat there in awe at how well I have progressed. PSA still declining and now at 1.26. Exercise and pray then pray again. Your dad is blessed to have you by his side. You got this. God Bless.
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