For those just joining me – I’m not talking about me in this post – rather I’m talking about what I am hearing regarding my mother’s health. Today we had an appointment with the urologist. He is the doctor that told my mother she had cancer. I wanted an appointment so that he could go over everything again while I was there – but also to answer a few questions. When you first hear the words “you have cancer” you don’t necessarily hear much afterwards, so I wanted to have the doctor go over it all again.
I didn’t quite like the way the doctor worded it – mostly in the presentation of RCC (Renal cell carcinoma) as grave. I didn’t like that. He said, we hope for the best but prepare for the worst. Yes, stage 4 RCC is terminal, but death is not imminent. If the treatments work, then there is a chance for some good quality living before death.
The doctor said that there were two broad types of cancer that will be determined from the biopsy – lymphoma or renal cell carcinoma. The chance of lymphoma is quite low – like 5% – and he thought that was the better of the outcomes because the lymphoma is treatable/curable (again, a choice of words that I don’t completely comprehend as the sense of curable doesn’t align with breast cancer – but it might with other cancers – being cancer free or in remission is not ‘cured’ IMHO). Anyways, if it is renal cell carcinoma then it is stage 4 and it is terminal.
One question I had was why a biopsy rather than removing the kidney? His comment was in part because there were tumors in the lungs, which means if it is RCC it is stage 4 and if it is lymphoma they treat that with chemo – so in either case, surgery is not the first choice of treatment.
I could tell he was not an oncologist, because he used the term chemo when talking about treatment that the oncologist would give. In all the reading I’ve done, it says that chemotherapy is not effective for kidney cancer (unless it is a rare sarcoma), but rather there are very effective immunotherapies and targeted therapies. These are often given via infusion, so people get them confused a lot – and it is often easier to just call everything chemotherapy – but they really aren’t the same thing so I really want for the doctors to be using the right terms.
The other thing I did today was to call the Community Care Access Center (CCAC). These same folks were an immense help when my dad was sick. Back then we wished we had called them sooner, so this time I was not going to wait. I had a great conversation with the intake team and they are sending a nurse over tomorrow to help assess mom’s pain levels and make recommendations to her primary care doctor for pain management. I think that when she is in less pain she will have a lot more energy. I remember just how draining pain can be!
I also asked how long it will take to get the biopsy results. The doctor said about 1 week. With the biopsy late on a Friday, we will probably end up with an oncology follow up the Monday a week later. I also asked what type of biopsy, and he said fine needle – seems like it is going to be CT guided. They will do some freezing but no anaesthesia.
We will have an initial oncology appointment next Monday – but they won’t have the biopsy results that quickly. The initial appointment will be a chance to get a better sense of what we are dealing with and what the treatment options might be given the different options. If nothing else, it is a chance to meet with the oncologist and get a little more familiar with the oncology setting.
It feels like I’ve been here for weeks – and yet it has only been two days. I’m tired – but that is in part jet lag, but also partly just tired.