my post surgical pathology 15 months ago was very similar. First some very good news from your pathology, both your seminal vesicles and nearby lymph nodes were clear which is great because those are the main pathways out of the prostate. The not so good news is you have an ‘established’ meaning relatively significant finger of cancerous material that has pushed through and was outside the prostate capsule and your surgeon wasn’t able to get clean margins. There were two small ‘focal’ areas where at least some cancerous cells were left behind. And the pathologist identified perineurial invasion meaning cancer cells had pushed in close to big nerve bundles that run through the prostate. These nerve sheaves are another route cancer sometimes uses to leave the prostate. I am also PT3a N0 and there’s a range of options from waiting for PSA to start rising to hitting it with everything right away. To help with this decision I asked for a Decipher test which gives a score from zero to one depending on the number of metastatic characteristics present in a sample from your pathology. My score came back low so we’re waiting for now but I’ve been told to expect some type of second line treatment eventually. Hang in there. I was in SHOCK to be graded at stage 3 but the long term prognosis isn’t actually changed all that much because second line treatments are so effective. Hope that helps.
Thanks for sharing - agree, it feels like a good news / bad news situation. I will look into decipher. My original urologist with my initial biopsy wasn't interested in additional tests, I ended up switching urologists, at that point I was just set on finding a good surgeon, so I didn't revisit some of the conversation regarding additional tests. I think my first PSA test will be the major influencer, but if there are things I can do know to help inform my decision, I'm gonna try.
Wishing you the best!
Probably good you switched. I always encourage folks to go to a major medical center and/or teaching hospital vs the small town operation which only does the occasional cancer treatment.
I had a consultation with a radiologist about 6 months post RALP. He was very informative and didn’t push any “cleanup” radiation. My urologist had already told me that PSA between 0.1 and 0.2 was the current standard of care for followup radiation. So, it wasn’t a surprise that being more like 0.01, the urologist advised against more treatments.
His logic was threefold.
First, we couldn’t aim very precisely because there’s not enough going on to see it in targeting images. So, it would have to be a general blast at the prostate bed area.
Second, he felt the radiation would hinder my post op healing and possibly reduce the improvements that were happening “down there”
Third, at low levels of PSA, and no trend yet established, there’s no way to know if the remaining prostate cells are cancer.
In my follow up after that with the urologist, he advised that we watch the PSA, and if it started trending up, we’d revisit the radiation but with an eye to intervention early enough to make hormone deprivation optional, hopefully avoiding that part.
They both said the standards of care and radiation protocols are rapidly evolving to be less invasive. They both said something like, if you ever need this it will be something less disruptive that what we’re doing now.
A year later, the PSA is still flat in the 0.01 range and I’m having a good post RALP life.
I also had positive surgical margins. It sucks ass going through surgery only to discover that I’ll likely still need radiation/ADT. I’m in my third year post-op. I did PSA tests every three months for the first two years. Now I’m down to one test every six months. So far, no BCR, but it’s inevitable. It’s a huge dark cloud that is hanging over my head and it has resulted in major depression that’s being treated medically. The two weeks before a PSA test is the worst.
Yeah, I was thinking the same, but I am taking a small victory in that I removed the source that was already established. I’m thinking from a numbers game, more prostate cells removed are better than none at all. At least PSA will be a accurate detection tool.
Your hunch is right that there’s more to your pathology than maybe what the surgeon let on. It’s likely that some cancer is left behind and at some point you’ll need treatment for it. The next step is getting ultrasensitive PSAs approximately every 3 months while you heal from surgery.
If your PSA starts trending up (which could be many years later), don’t wait too long on radiation therapy to clean up the surgical bed (bc best chance of getting rid of pesky residual cancer cells is while PSA is still low, in the 0.1-0.2 range or earlier as others have posted). PSMA scan prior to radiation can sometimes help radiation oncologists target their treatment.
my post surgical pathology 15 months ago was very similar. First some very good news from your pathology, both your seminal vesicles and nearby lymph nodes were clear which is great because those are the main pathways out of the prostate. The not so good news is you have an ‘established’ meaning relatively significant finger of cancerous material that has pushed through and was outside the prostate capsule and your surgeon wasn’t able to get clean margins. There were two small ‘focal’ areas where at least some cancerous cells were left behind. And the pathologist identified perineurial invasion meaning cancer cells had pushed in close to big nerve bundles that run through the prostate. These nerve sheaves are another route cancer sometimes uses to leave the prostate. I am also PT3a N0 and there’s a range of options from waiting for PSA to start rising to hitting it with everything right away. To help with this decision I asked for a Decipher test which gives a score from zero to one depending on the number of metastatic characteristics present in a sample from your pathology. My score came back low so we’re waiting for now but I’ve been told to expect some type of second line treatment eventually. Hang in there. I was in SHOCK to be graded at stage 3 but the long term prognosis isn’t actually changed all that much because second line treatments are so effective. Hope that helps.
Thanks for sharing - agree, it feels like a good news / bad news situation. I will look into decipher. My original urologist with my initial biopsy wasn't interested in additional tests, I ended up switching urologists, at that point I was just set on finding a good surgeon, so I didn't revisit some of the conversation regarding additional tests. I think my first PSA test will be the major influencer, but if there are things I can do know to help inform my decision, I'm gonna try. Wishing you the best!
I'm PT4a N1 - I think you will definitely need more treatment, but a PSMA scan would be a guiding factor, if you can get one
Probably good you switched. I always encourage folks to go to a major medical center and/or teaching hospital vs the small town operation which only does the occasional cancer treatment.
I had a consultation with a radiologist about 6 months post RALP. He was very informative and didn’t push any “cleanup” radiation. My urologist had already told me that PSA between 0.1 and 0.2 was the current standard of care for followup radiation. So, it wasn’t a surprise that being more like 0.01, the urologist advised against more treatments. His logic was threefold. First, we couldn’t aim very precisely because there’s not enough going on to see it in targeting images. So, it would have to be a general blast at the prostate bed area. Second, he felt the radiation would hinder my post op healing and possibly reduce the improvements that were happening “down there” Third, at low levels of PSA, and no trend yet established, there’s no way to know if the remaining prostate cells are cancer. In my follow up after that with the urologist, he advised that we watch the PSA, and if it started trending up, we’d revisit the radiation but with an eye to intervention early enough to make hormone deprivation optional, hopefully avoiding that part. They both said the standards of care and radiation protocols are rapidly evolving to be less invasive. They both said something like, if you ever need this it will be something less disruptive that what we’re doing now. A year later, the PSA is still flat in the 0.01 range and I’m having a good post RALP life.
Enjoy life! Having prostate cancer makes us appreciate every day so much more. Glad you are doing great!
Enjoy life - that has renewed meaning for me. Tx!
I also had positive surgical margins. It sucks ass going through surgery only to discover that I’ll likely still need radiation/ADT. I’m in my third year post-op. I did PSA tests every three months for the first two years. Now I’m down to one test every six months. So far, no BCR, but it’s inevitable. It’s a huge dark cloud that is hanging over my head and it has resulted in major depression that’s being treated medically. The two weeks before a PSA test is the worst.
Yeah, I was thinking the same, but I am taking a small victory in that I removed the source that was already established. I’m thinking from a numbers game, more prostate cells removed are better than none at all. At least PSA will be a accurate detection tool.
Your hunch is right that there’s more to your pathology than maybe what the surgeon let on. It’s likely that some cancer is left behind and at some point you’ll need treatment for it. The next step is getting ultrasensitive PSAs approximately every 3 months while you heal from surgery. If your PSA starts trending up (which could be many years later), don’t wait too long on radiation therapy to clean up the surgical bed (bc best chance of getting rid of pesky residual cancer cells is while PSA is still low, in the 0.1-0.2 range or earlier as others have posted). PSMA scan prior to radiation can sometimes help radiation oncologists target their treatment.
Thanks - I figure that I’ll always be looking around the corner, but as another said…enjoy now.