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My husband, 73 years old, has been diagnosed with a 3+4/7 one core 80% volume, 14.5 mm, perineurial invasion, PSA 8, isoPSA test 24.5. Oncotype results soon. Has not had a MRI yet, but biopsy was MRI-guided. My husband also sees a hematologist for 4 genetic blood disorders (prone to clotting). He is on a blood thinner. Has had a couple of back surgeries and has stenosis, foot drop, and one kidney (donated 50 years ago to his sister). Lots of coordination and input is going to be needed for treatment. As all of us know the waiting is difficult...post biopsy discussion then a six-week wait to get results of oncotype-DX (Yuck!). I think the six-week wait (Doctor appt) is excessive, but believe the next step will be to discover if the cancer is anywhere else and that is the time frame needed for accurate test results (MRI/PSMA) after biopsy.
We have requested the urologist to release the oncotype results to us prior to our next visit. No word yet. I really want to be prepared with questions. Our mtg after biopsy gave limited info, basically just the Gleason score and a little discussion of possible treatments. Pathology report was sent to us a couple of days later that gave more detail. Had I had the results prior to the meeting I would have had a ton more questions. I also believe my husband is going to need a multi-displinary group of specialists to decide what is best for him given his other medical issues. He has prescheduled doctor appointments with his primary doctor and his hematologist that occur before our next appointment with the urologist. So my questions is what can I do to speed things up. Do we get the primary doc and hematologist more involved now, or do we wait and let his urologist handle everything? Also when do you get a second opinion, when all the current data is in, or after a team (if one is set up) discusses. Any thoughts would be appreciated. Kind of drive my husband crazy, but he does appreciate my concern.
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Self refer, if you can, to a genitourinary oncologist. They specialize in prostate cancer and have the latest information on prostate cancer.
Many urologist are less informed. Many oncologist are less informed.
He needs the best of the best of the best.
Checkout the ANCAN.org website.
They have support group videos on YouTube which will show you the kind of people they are. Watch the advanced support group videos.
Best of care to him.
Thank you so much!
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1 Reaction3+4 is the lowest Gleason score that oncologists are even willing to call "cancer", and while the perineural invasion adds a bit of extra risk, overall they've caught your husband's prostate cancer almost as early as possible, and I hope his prospects will be good. Obviously the missing kidney will be a concern when choosing medications.
Best of luck!
Yes, we hope we have caught it early! Thank you!
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1 Reactiondlt, he'll want to see a radiology oncologist and a surgical oncologist. You don't want to see either without the PSMA/PET, but you could get on their schedules, so there isn't just another delay. The PSMA/PET can be done 3 days to a week after the biopsy. It it has already been done that long ago, ask doctor to write the requisition.
You don't have to wait for a visit. As soon as the PSMA is complete, ask for adt. I'd want orgovyx. They'll want him on orgovyx for two months before treatment. (unless parameters have changed, anyone?) But once you start ADT, he has begun treatment. I like early ADT because perineural invasion is the cancer escaping the prostate.
It's best to slow it down.
Meanwhile the internet. I'd suggest looking at Amir Kisan and the MRI guided 5 fraction treatment. He would have been my choice of oncologists, but UCLA didn't then; it does now, have a working machine.
wishing you both lots of luck
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Thank you for your response. We actually sent a letter to his urologist today, explaining our concerns about the delays and how can we speed things up. Because of his blood clotting disorders, he has been seeing a hematologist/oncologst for 15 years. I don't want to step on the urologist toes, but want to get things done so we can make a decision for treatment. Will read up on Orgovyx. I will inquire about scheduling the PSMA/PET when he responses today or tomorrow. A friend of ours was put on a medicine immediately, although he is a Gleason 10. Thank you so much for your information response. Very appreciated!
@dlt22513, I'd thought I'd check in to see how you and your husband are doing. I couple of weeks have passed, so perhaps you can share a bit more. What turned out to be next? What did you learn?
Went to urologist to discuss Oncotype-DX GPS results after 3 weeks of waiting. Had to request an appt if there was a cancellation, as original appointment was 6 weeks. Two weeks of trying to contact them to get results earlier. He said it came back not performed. Not enough to evaluate. Urologist said this is a 7 A and some people do nothing. I had to remind him he has perineural invasion and an ISOPSA of 24.5. That is why we were doing the GPS. We are switching over to Comprehensive Care and will be seeing a radiation oncologist 9/8. They submitted a referral for a PSMA. Hopefully, this will be enough to move forward. Looking into possible Cyberknife.