I have become a staunch supporter in advocacy and have helped others to do the same. I want to continue to work on that path, to help others empower themselves.
On May 26, 2015, my husband pushed me into going to see a doctor for nausea and lower back pain. The MD thought it was my gall bladder and sent me for an ultrasound of my abdomen. The ultrasound technician told me to wait in the hospital waiting area for the results. I received a call a short time later indicating there was a mass on my right kidney and a CT was scheduled for the next morning.
I received my diagnosis on May 28, 2015. My world changed that day as I became a cancer patient. I had always thought I was the lucky one in my family – that I was not going to have cancer like all the rest of them – that changed. The urologist told me not to worry – that kidney cancer is treated surgically and that he would do the nephrectomy in two weeks, then as soon as I healed from that, another surgeon would go in and remove the nodules in my right lung. Simple as that and I would be done. He performed a ureteroscopy and cystoscopy that day as well to make sure it was not in the bladder or ureter – it wasn’t. During the weeks leading up to surgery, I had all kinds of labs, scans, and other appointments to check for my ability to have surgery. It was a whirlwind.
On June 9, 2015 I had my right kidney removed; I stayed in the hospital overnight then was sent home to recover. It took several weeks for me to be up and about and I returned to work (part-time from home) at about the 1-month mark although I did not return to the office full-time for another month or so. At my follow up appointment with oncology I was again told treatment was surgical only.
I began having CT scans every three months after this surgery and when I asked about the lung nodules, I was told they didn’t know what they were, and they would do surveillance. After the January scan showed them to be consistently growing, I asked the doctor for a surgical consult. The cardio-thoracic surgeon suggested they be taken out with a right lower lobe removal. This was scheduled for about a month out – in April of 2016.
Following the hospitalization for the lobectomy – I was told it was metastatic RCC and that they got it all – clear margins. I was told I was NED – hallelujah!
Unfortunately, I had breathing complications following the surgery and was sent to the ER for treatment. Part of the work up was a CT scan to look for blood clots, bleeding, etc. That scan found a new nodule in my right upper lobe and NED was gone.
I saw an oncologist who told me very little about the cancer, I asked for a second opinion who told me I had 5 years to live and finally ended up with the chief of the department as my oncologist. I also consulted a specialist during this time as I needed to have a RCC expert review my case. He changed my scans back from PET to CT and suggested very specific labs to have done every three months.
I spent the next three months not only trying to recover from the lobectomy but trying to figure out what the complications were that had so impacted my breathing. Come to find out, my vocal cords were working incorrectly which can happen after a long intubation. This required speech therapy and lung rehab – a monitored physical therapy exercise regimen. It took several months but I finally got most of my strength and ability to breath and talk normally back.
I was again placed on surveillance with CT scans every 3 months along with labs. It was a very anxious time as the nodules (3 of them) were consistently growing 1-2 mm per scan. My oncologist wanted to continue watching them even though I kept talking about my anxiety over this and asked what treatment was available. On July 20, 2017, I saw a specialist in Seattle Washington. After a thorough review of my records and a long discussion he recommended me for IL2 treatment.
For me to obtain the IL2 treatment required travel. I spent 4-5 days in the ICU for each of the 4 rounds – taking 7, 6, 6 and 4 bags of IL2 respectively. This was not an easy thing to do. IL2 is bad enough, but when you must fly to receive the treatment it is that much worse. Due to the drugs they gave me to counteract the side effects, I don’t remember a lot, but what I do remember was very rough. I lost my appetite following the first dose and could not eat for several days. I ended up with c.diff after one of the rounds. I had vision issues after one round. I had horrible itching for weeks afterwards. But luckily, upon completion of the IL2 regimen in December of 2017 – my disease stabilized. There has been no shrinkage over this last year, but no growth either. I am now over a year out from IL2.
My most recent scan found several nodules, small and stable. I know in my heart that stable won’t last forever and that growth will happen. I just pray that it takes a long time.
KCCure thanks Terri for sharing her kidney cancer story.