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Jun 16, 2018 Latest post:
Nov 1, 2018
In March 2018, I rolled over in the middle of the night and experienced very sharp pain in my right abdomen. Thinking it was possibly appendicitis, Kaiser advice nurses sent me to the ER the following day. An ultrasound was done and a 10 cm mass was found on my right kidney. I went home after more testing (CT Scan) with papers saying "highly suspicious of Renal Cell Carcinoma." Generally, 95% of these kidney masses are cancerous. We met with the urology surgeon a few days later, and surgery for a radical nephrectomy (kidney removal) was scheduled for 3/23, almost exactly 3 weeks from the ER visit. Before my surgery, I had my 50th birthday and had a large party at The Firehouse Art Center. It was fantastic!
The surgery went ahead as planned. It took about 5 hours, and much of it was done laparoscopically. I have a 4 inch incision over my belly button and 3 small incisions. My tumor had spread a little bit into the fatty tissue by my liver, and the surgeon had to scrape about 1% of my liver off. The adjacent adrenal gland would not come apart from the kidney, so that was removed too, even though there was nothing wrong with it. My blood tests were all very good through all of this. Everything was functioning as it is supposed to.
I did well in the hospital. The staff was surprised at how much I walked. I went home 3 days later. I did well at home. I tried to walk a lot but was very fatigued. The meals and help that people provided for us were absolutely wonderful! The fatigue continued for much longer than I expected. I was so used to being active and energetic and expected to bounce right back. I'm starting to feel more energy at about 3 months.
The biopsy report was pretty sobering news. About 80% of renal cell carcinoma (RCC) cases involve the clear type of cancer cells. My cancer cells are the non-clear type, and are characterized as chromophobe with sarcomatoid features. That combination accounts for only about 5% of RCC cases. My cancer is characterized as grade 4 (grades range from 1 to 4), which means it is a very aggressive type of cancer. The bad part about the rare cancer is there is not much data on it and they really don't know the best way to treat it. RCC in itself is notoriously hard to treat. Traditional chemo and radiation aren't effective. There have been big strides in the last few years with new treatments, but it is still not something that is typically cured. I was told the surgeon got negative margins and the tumor was encapsulated. That was good news. I was given a 50/50 chance of recurrence. That was not good news. After surgery, with no metastasis (aka spread or mets) the treatment is watch and wait. I was told we would do a 3 month scan to see if there is any recurrence, and we made an appointment with an Oncologist at Kaiser.
We met with Dr. Lammers at Kaiser. The first thing he said to us was, "If I were you, I would get into a clinical trial." He said he didn't have one for me, but he would keep looking. We liked him a lot. He seemed knowledgeable and proactive. He said he would consult with a RCC specialist at UCHealth in Denver, Dr. Lam. UCHealth is a big, well respected teaching hospital. Before we left that day, he said, "I found you a trial." UCHealth called me at home later that day to start getting the ball rolling, and we had approval from Kaiser over the weekend.
We spent the next few weeks traveling to Denver (about a 1 hour drive) for appointments and getting things set up for this trial. No metastasis was a condition for acceptance into the trial. My first scan was 2 months after surgery. They found a 9mm nodule on my lung and 2 other tiny nodules. There was no way of knowing if this was cancer or not. I did not have a baseline scan of my lungs. They decided we needed another scan 4 weeks later to see if there is any growth.
Unfortunately, the spots did grow during that month. Two of them grew .5 mm and there was one new tiny one. That was very bad news. It is definitely metastasis from RCC. The Friday I did the scan, Dr Lammers called with the news right away. He said this can be treated and we are very very lucky to have found it this early. The fact is, if I hadn't tried to get in that first trial, we probably wouldn't have known this was cancer until it was 6 months later. That night Dr. Lam from UCHealth called me 3 times. She got a hold of me at 8pm. She wanted to fast track me into another study she was doing. Its a targeting chemo drug + immunotherapy. Cabo + Keytruda. She had made me an appointment for 9am on Monday morning. I already had some of the testing done because of the first trial (mostly scans). Monday we met with both doctors. Dr. Lammers had thought there was a different trial that might be better for me but at the end of the day he found out that that one was closed, so we decided to go with Dr. Lam's study. We still have a few hoops to jump through, but should be able to start next week. Dr. Lam told us that she wrote this study specifically for a patient who was out of options. She said that person is in a very different place them I am. I would be the 6th person enrolled. I think its amazing to have a doctor who is that proactive for her patients.
I posted on Smart Patients about my trial and other RCC patients/caregivers were very encouraging and quite jealous! They made me realize how lucky I am to be close to experts and good opportunities. I don't feel very lucky right now, but there are small things to be grateful for.
The fact is, RCC is treated like a chronic disease. I will most likely be on some kind of drug forever. When one stops working, we will try another. These have many side effects. That is my future. The hope is that there are so many new things being developed and treatment options will only get better and better. There are no guarantees. I am hoping to get the most time possible. Smart Patient people said that I have an advantage of being so proactive and smart and that will help my chances a lot.
This is a long haul. Dr Lammers described it as a marathon. I was advised to apply for disability. I may not be able to work.
We are still finding our footing with this news. We don't know how the drugs are going to affect me. It is hard to make any plans. We are still pretty shocked, but we will get to a more happy optimistic place soon. It has been hard on Eric and the boys.