Looking for some feedback

I'm 5 months out from robotic prost. Healing has been frustratingly slow but some positive signs, abdominal discomfort finally slowing. One Depends a day which is an improvement, leakage is unpredictable though, sometimes stress from exercise sometimes just a random squirt for reasons I don't quite get. Beginning to get energy back with the help of springtime.
Anyway. I'm healing away 4 months in, my 3 mo. PSA is undetectable, my GP and my urologist/surgeon both say keep the PSA tests comin' every three mos. and we'll monitor it. Both recommended establishing a relationship with an oncologist just so if there is a recurrence we'll be ready to go as some of my stats suggest recurrence somewhere down the road. So I visit the oncologist. We have a nice long talk. He's looking at all the same data my other docs have. He notes the possibility for recurrance but says no treatment now, go home and continue to heal and we'll move ahead as everyone thus far agrees. He remarks that my case has some interesting elements, low PSA I think in particular and asks if I would mind if he discussed my case with other docs in the field something he says is often done. I agree. The next day I get a call that that meeting took place with not my oncol., but his colleague, not my surgeon, but his colleague and a radiologist whom I had met and who had examined me way earlier on as I was considering treatment options. He says, that I should have radiation treatments of some kind. My oncologist agrees to pass that thinking along, but thinks a bone scan is in order to make sure radiation at this point would be the appropriate approach. The nurse navigator,a kind of coordinator, and who has been of great help through out all this calls and says, the oncologist says let's throw in a CT scan for good measure on the same day just to make sure everything is everything. I had a CT just before surgery and it was neg. I'd rather do one thing at a time and do the bone scan get that over with then later perhaps another CT scan if we must. My take is that the radiologist who came on very strong on my first meeting with him early on merely wants to do some more radiology treatment and somehow and these guys are kind of going along for the ride. These guys all have the same data. How did we go from 3 docs saying go home and heal and we'll monitor PSA, to an upcoming bone scan, CT scan and perhaps radiation? It kind of has my head spinning. The nurse navigator says the early stages of treatment and discernment can be this way. Is this true? any red flags here that I'm missing. Would love some takes from the experienced, knowledgeable and savvy folks in this group. I find it most helpful.

Hi Englishteacher, I am also a gleason 8, but was a T2c. My surgeon told me post surgery that if my tumor was not capsule contained that he would advise additional treatment. We didn't discuss what that would be. From what I have read, additional treatment is often taken with a gleason 8-10 if there is any indication that the cancer may have gotten loose. The radiologists recommendation does not seem inappropriate. Also, waiting for a rise in PSA is also a reasonable approach. I don't think you are getting bad advice from either. Perhaps other here more experienced folks here can advise more than I.

englishteacher,
I'm a Gleason 8 and also had EPE. A year after robotic surgery I'm still in the zero club. I wouldn't rush into RT just yet. Monitor you PSA with the ultra sensitive assay every 3 months. If the PSA starts rising then you van go to the next step.

English teacher,
I see a couple of red flags. 1st a bone scan with your psa numbers would show nothing; and your doctors know this. Also there is no way your Ct scan would change in a couple of months; again it would also show nothing. It sure soulds like they are trying to get extra money from your treatments. As a noted doctor once said" Few men die from prostate cancer; but many are making quite a good living from it." This seems to be the case here.
The appropriate course of action is to wait until the psa makes a move as 50% of positive margins never progress to anything.
JohnT

Thanks for your thoughts. My instincts agree with much of what you say here. I had the bone scan two days ago just to have another tool. There was no recomendation for one presurgery, although I did have a CT scan-neg.
Waiting nervously and impatiently for the bone scan results, a born worrier, I got it from my mother's side, my PSA at surgery was 2.5 and I get a Gleason 8. could bone metastasis also defy PSA, albeit undetectable(at least at 3 mos. out.)?

Would you please let me know what kind abdominal discomfort do you have?  I have Davincy about 4 months now and still have mild discomfort pain around belly  due to thi pain and I have asked my family doctor to do all the tests, Xray, CT scan, MRI  and all normal - hope this pain will gone soon? very worry - PSA after surgery is Zero - gleason score before surgery is 3+3=6 localize - 1 dry pad per day - No ED problem

 

Thanks

1218davinci

 

 

Englishteacher said...
I'm 5 months out from robotic prost. Healing has been frustratingly slow but some positive signs, abdominal discomfort finally slowing. One Depends a day which is an improvement, leakage is unpredictable though, sometimes stress from exercise sometimes just a random squirt for reasons I don't quite get. Beginning to get energy back with the help of springtime.
Anyway. I'm healing away 4 months in, my 3 mo. PSA is undetectable, my GP and my urologist/surgeon both say keep the PSA tests comin' every three mos. and we'll monitor it. Both recommended establishing a relationship with an oncologist just so if there is a recurrence we'll be ready to go as some of my stats suggest recurrence somewhere down the road. So I visit the oncologist. We have a nice long talk. He's looking at all the same data my other docs have. He notes the possibility for recurrance but says no treatment now, go home and continue to heal and we'll move ahead as everyone thus far agrees. He remarks that my case has some interesting elements, low PSA I think in particular and asks if I would mind if he discussed my case with other docs in the field something he says is often done. I agree. The next day I get a call that that meeting took place with not my oncol., but his colleague, not my surgeon, but his colleague and a radiologist whom I had met and who had examined me way earlier on as I was considering treatment options. He says, that I should have radiation treatments of some kind. My oncologist agrees to pass that thinking along, but thinks a bone scan is in order to make sure radiation at this point would be the appropriate approach. The nurse navigator,a kind of coordinator, and who has been of great help through out all this calls and says, the oncologist says let's throw in a CT scan for good measure on the same day just to make sure everything is everything. I had a CT just before surgery and it was neg. I'd rather do one thing at a time and do the bone scan get that over with then later perhaps another CT scan if we must. My take is that the radiologist who came on very strong on my first meeting with him early on merely wants to do some more radiology treatment and somehow and these guys are kind of going along for the ride. These guys all have the same data. How did we go from 3 docs saying go home and heal and we'll monitor PSA, to an upcoming bone scan, CT scan and perhaps radiation? It kind of has my head spinning. The nurse navigator says the early stages of treatment and discernment can be this way. Is this true? any red flags here that I'm missing. Would love some takes from the experienced, knowledgeable and savvy folks in this group. I find it most helpful.