We had our first visit with the oncologist yesterday. He did give us some good news – as far as the CT scans show, there are no signs of bone mets.
There was nothing wrong with the visit. The oncologist was nice enough. He provided the information we were looking for, and he was patient with our questions. I did feel a little like he didn’t like me – like I was the know it all kid in the class that doesn’t really know it all (which I freely admit, I don’t know it all).
I asked about clinical trials and found out that they don’t do any at the local clinic. If we want to do a trial we need to go to Hamilton – and he is happy to make that referral. After a brief discussion with mom and my aunt who is most likely to be doing all the driving, we decided that yes, we want to at least talk to the folks in Hamilton.
The doc said that from the scans it looks like run of the mill kidney cancer. He mentioned the chemotherapy is not recommended with kidney cancer, rather targeted therapy is. The first line treatment will most likely be Sutent (Sunitinib). He mentioned that approvals needed to be made before it could be started – so it would be about two weeks. Sutent is a targeted therapy taken in pill form. The protocol is two weeks on, one week off. Dosage is adjusted based upon side effects. He said that the medication won’t shrink the tumors but rather slow or stop their growth (if/while it works). The one disadvantage to Sutent is that it doesn’t work as well with steroids, which is what mom is currently taking to relieve her back pain. They have been a miracle drug, so it would suck to have to deal with that.
I asked about immunotherapies, and his comment was that they do that second or third line – after the Sutent doesn’t work. At least that is the approval chain in Canada. To me, this felt like recipe medicine that doesn’t take into account the individual patient characteristics. There were no choices given. There is a possibility, if we can get into a clinical trial, that we start with an immunotherapy rather than a targeted therapy. I really hope we can get into the Hamilton clinic to talk clinical trials later this week or early next week (before starting Sutent).
I didn’t like that I cannot communicate with the doctors electronically. There is no way to see mom’s records. If we want copies of blood test results done at the hospital, we need to ask for them. We cannot just send a question to the nurse or doctor via email. We also need to wait on several things before the next appointment. So they will call us for the appointment after they get the biopsy results and approval for the Sutent – so they may know the biopsy results for a few days or even a week before we get to hear what they say.
I certainly feel the passivity in the medical system here. It is still very much paternalistic. The doctors withhold information until it is convenient for them to provide it. This doesn’t allow me to be prepared for the appointment – so I don’t necessary ask any tough questions. I hate that I cannot review the results myself before the appointment. I hate that I cannot self-refer to the Hamilton centre – rather we need to wait for the doctor here to make the referral. ugg.
We asked the doctor about surgery. He said he would review the case with his peers during the video chart review (they call it some kind of ’rounds’ here). They will see if mom is a candidate for surgery. Mom was OK with the idea of it, so I really hope she is a candidate. The onc said that if surgery was indicated she would be referred to surgeons in Hamilton where they have kidney cancer surgeon specialists. That was comforting. From what I’m reading, there are significant benefits to surgery for most types of metastatic kidney cancer – so I really hope that turns out to be the case.
If I am interpreting things correctly, if surgery is an option that would happen first – hopefully within the next couple of weeks. Then once she has sufficiently recovered, they would start on some kind of therapy – targeted such as Sutant or a clinical trial.
Once treatment starts, blood counts will be followed closely at first. Then follow up scans would be done in three months – as long as nothing changes or there are no new symptoms, Sutent is the continued path of treatment. Of course, if mom gets into a clinical trial, all that changes, and all this assumes that the pathology comes back with ‘run of the mill’ kidney cancer.
For the rest of the week we will be dealing with all the other logistics associated with mom’s illness. We have various home care assessments, and we are still trying to figure out optimal pain management.