Thank you to those of you who helped with questions to ask and treatments to explore. We had our appointment with the urologist today to find out the results of my husband's bone scan and CT scan. Good news -- no indication that cancer has spread outside the prostate! But, because it's higher-grade cancer, he should not "sit and do nothing." (Gleason 8, T2b). And he said that typically, with a higher-grade cancer, surgery is recommended (he is a surgeon). Urologist wants DH back in 3 weeks for cystoscopy. He told us we should also consult with radiation oncologist.
My husband has BPE/BPH, has had incontinence issues in the past, and a return of some of those problems led to complaint to PCP, who ordered TRUS in March. PCP said results were fine, but referred DH to urologist, and after waiting for an appointment and having his appointment rescheduled, finally saw the urologist in May. Uro said prostate was twice normal size, and ordered another appointment for biopsy. First available biopsy was mid-June. First available appointment for results of biopsy was late July (last week). DH finally let me know what was going on the week before when I kept pressing him about
the follow up from the BPE (he won't do that again!).
Biopsy results last week and the first time that I had met urologist. I did not like him. I felt rushed and he was almost yelling at us. He told us Gleason score and that cancer was aggressive and that he was ordering bone scan and CT scan to check for spread, but he would be surprised if cancer had spread beyond prostate. Told us to make appointment for 2 weeks out, but if DH could get scans the following week, call his medical assistant (gave us her card), because "we don't make cancer patients wait."
When we checked out, the earliest appointment we could get was 3 weeks out. The next day (Friday), DH was able to get scans scheduled for the next week (2 days ago). On Monday, I called the medical assistant twice to schedule appointment -- no answer, no return call. On Tuesday, I went to the urology group's office on my way to work to get an appointment for Thursday or Friday. I told them I would wait until they could talk to whomever they needed to talk to -- doctor had told us "they don't make cancer patients wait." After about
30-40 minutes, I left with an appointment for Friday (today) morning. This is long, but this may help others realize that persistence can help.
We have not been happy with the ability to get appointments in a timely manner, and we are not happy with the urologist either, so finding a new urologist is one of the tasks we have ahead of us.
When we checked out, the scheduler told us they would call us for cystoscopy, and then she walked us through the back to the radiation oncology department to schedule an appointment with the RO. They were able to work us in today. The RO was much easier to talk to and answered questions, but his therapy was 9 weeks, 5 days a week, which seems really long to me -- more research in order.
So, this is our plan:
Get second opinion on biopsy slides (Bostwick or Epstein?)
Find a new urologist
Consult with Dr. Vip Patel re: surgery
Contact Moffit Cancer Center in Tampa for multi-disciplinary consult
Contact Dr. Debra Freeman, Cyberknife Center of Tampa Bay for consult
Contact Dattoli in Sarasota
Does this sound a reasonable plan? We are trying to get a good cross-section of experts to help make the best treatment decision for my husband. Ultimately, it is his decision (with input from me). I know side effects will be a consideration, but my overriding concern is cure.
Any input you can give us with the benefit of your experience and knowledge will be greatly appreciated.
Post Edited (Larry'sWife) : 8/5/2017 5:36:12 AM (GMT-6)