Treatment
My husband had been seeing a couple of different urologists for kidney stones over the last several years. During that time his PSA was also rising, although it was still < 4.0. Neither of the urologists, not the primary care doc ever brought up the subject of PSA. Ironically, it was a life insurance company that red flagged it after the next PSA was 5.6. Then we found a new urologist and had a biopsy done in April 2010. Cancer was found, all Gleason 8, on the left lobe and it could be felt on a DRE. The new urologist performed a RRP in June 2010. The final pathology was T3N0M0, Gleason 9, extracapular extension, and positive margins. The surgeon told us he was good to go, just come back every 3 months for a PSA test.
I began extensively researching prostate cancer, particularly that related to his final pathology. Everything I read suggested that he was at high risk for the cancer returning (meaning it wasn’t all removed) and that he might be a perfect candidate for adjuvant radiation. We tried to discuss this with the surgeon but he was dead set that radiation would be overtreatment. It was very difficult for me to be the one to burst my husband’s bubble, but I was afraid he would be missing out on something that would help him. I was able to convince him (hopefully by being gentle but more honest than his surgeon about his risk factors) to get 3 more opinions. All said he should get radiation. They confirmed that I was reading the right papers and interpreting them correctly. I was both relieved and saddened at the same time. Again we tried to talk to the surgeon about it but he still said it would be overtreatment. At that same time the first PSA results since surgery came in as undetectable (Aug., 2010).
Right about the time my husband decided that he would have radiation, his next PSA came in at 0.07 (Oct., 2010, four months after surgery). It was the 2nd opinion doc that suggested we even have another PSA so soon, rather than wait the 3 months suggested by the surgeon. In fact, that same doc was actually surprised that his first one was undetectable given the final pathology. The cancer is still there. We still believe that our surgeon is a good one. It wasn’t his fault that we didn’t come to him sooner or that my husband’s cancer is an aggressive G9. I am disappointed that he wasn’t more straight up with us. Now neither of us can really trust him to look out for us over the ensuing years even though we would very much like to. All of the other doctors that we see are out of the area. I’m just glad that we started the process of lining up the next step when we did or we would just be starting the whole decision process of what, where, when, how, who, should we/shouldn’t we.
We decided on a well know radiation oncologist who also put him on MAB (antiandrogen & androgen ablation) for 5 weeks before beginning, and during radiation treatments with IMRT. He will have a 2 hour drive each way every day for the 5-6 weeks and I am worried about how well he will be able to drive himself.
I am also worried about the insurance coverage even though they have “approved” the treatment. The cost is a very big number and we could lose our house if the insurance doesn’t pay for >90%. I want to call them but I don’t think I would get a straight answer and it would only cause more stress.
One last aside. My husband was complaining of groin pain before the surgery (which is unusual as far as we know). The pain went away for 2-3 weeks after the surgery but it is back now. When he had the gold markers put in, the ultrasound doc said he saw something that could be scar tissue or missed tumor. We wonder if this could be the source of the pain. My husband is anxious about what the pain might mean but all the docs he’s mentioned it to either don’t know why or ignore it.
I have encouraged my husband to post his own blog and hopefully he will soon!
I began extensively researching prostate cancer, particularly that related to his final pathology. Everything I read suggested that he was at high risk for the cancer returning (meaning it wasn’t all removed) and that he might be a perfect candidate for adjuvant radiation. We tried to discuss this with the surgeon but he was dead set that radiation would be overtreatment. It was very difficult for me to be the one to burst my husband’s bubble, but I was afraid he would be missing out on something that would help him. I was able to convince him (hopefully by being gentle but more honest than his surgeon about his risk factors) to get 3 more opinions. All said he should get radiation. They confirmed that I was reading the right papers and interpreting them correctly. I was both relieved and saddened at the same time. Again we tried to talk to the surgeon about it but he still said it would be overtreatment. At that same time the first PSA results since surgery came in as undetectable (Aug., 2010).
Right about the time my husband decided that he would have radiation, his next PSA came in at 0.07 (Oct., 2010, four months after surgery). It was the 2nd opinion doc that suggested we even have another PSA so soon, rather than wait the 3 months suggested by the surgeon. In fact, that same doc was actually surprised that his first one was undetectable given the final pathology. The cancer is still there. We still believe that our surgeon is a good one. It wasn’t his fault that we didn’t come to him sooner or that my husband’s cancer is an aggressive G9. I am disappointed that he wasn’t more straight up with us. Now neither of us can really trust him to look out for us over the ensuing years even though we would very much like to. All of the other doctors that we see are out of the area. I’m just glad that we started the process of lining up the next step when we did or we would just be starting the whole decision process of what, where, when, how, who, should we/shouldn’t we.
We decided on a well know radiation oncologist who also put him on MAB (antiandrogen & androgen ablation) for 5 weeks before beginning, and during radiation treatments with IMRT. He will have a 2 hour drive each way every day for the 5-6 weeks and I am worried about how well he will be able to drive himself.
I am also worried about the insurance coverage even though they have “approved” the treatment. The cost is a very big number and we could lose our house if the insurance doesn’t pay for >90%. I want to call them but I don’t think I would get a straight answer and it would only cause more stress.
One last aside. My husband was complaining of groin pain before the surgery (which is unusual as far as we know). The pain went away for 2-3 weeks after the surgery but it is back now. When he had the gold markers put in, the ultrasound doc said he saw something that could be scar tissue or missed tumor. We wonder if this could be the source of the pain. My husband is anxious about what the pain might mean but all the docs he’s mentioned it to either don’t know why or ignore it.
I have encouraged my husband to post his own blog and hopefully he will soon!