Oct 18, 2013 - 9:19 am
So glad to have found this resource. DH was diagnosed about one month ago and had his left kiidney removed. It's RCC clear cell. The tumor size was 9 cm and had the tumor thrombosis, although it had not turned into the vena cava yet. It was stage 3a with a Furhman Grade 4. He is only 49 and had no risk factors or symptoms. In fact, he had a CT scan of his kidneys about two years ago as part of another set of testing and nothing showed up then. He just went to the hospital with blood in his urine (thinking kidney stone) and about four hours later, we heard the news that it was cancer.
After having the misfortune of having consultations with the "general urologists" on call at the local hospital (who need to attend remedial Bedside Manner courses), we were able to get in with a urollgic specialist who did the surgery at a teaching/research hospital.
I am wondering in how much detail did you doc go over your pathology reports with you? At our follow up visit, he told us that the margins were clear and the lymph nodes were clear. No sign of spread. He is not referring us on to an oncologist at this point and the next scan will be in four months and then every six months. We left the office feeling pretty good. Unfortunately, we had doubt cast on our positive feelings by the nurse case manager and another doctor (not a specialist) who is retained by my husband's employer to assist him in getting back to work. Both of them expressed "concerns" and were surprised that the surgeon didn't go over our pathology report in more detail with us. Of course, it's filled with scary medical terminology that we are not qualified to interpret.
So, I've scheduled a follow up appointment with our surgeon but can't get in for another week. We also decided to go ahead and seek the opinion of an urologic oncologist.
What other questions should we be asking? What other resources should we be seeking?