Loraly Knopp is a stage 4 kidney cancer survivor. She shares with us the anxiety and fear that often occurs for patients when they’re faced with treatment related decisions. This is her story.
As I share my story, I don’t know what to do.
In 1986 at the age of four, I was diagnosed with stage IV Wilms tumor. My right kidney was removed and I received chemotherapy and radiation to metastatic locations in my lungs. The treatment worked and I was cured. I enjoyed a happy, normal life with no medical issues at all until 2004 when cardiomyopathy developed after my son was born. Gradually over time my ejection fraction has improved from 25% to a slightly below normal 48%. During a yearly mammogram in May 2015 something suspicious was noted which prompted my being sent for an MRI. Images of the chest were fine but a suspected cyst was noted on my liver and a scan of the area was ordered. The scan showed that the cyst on the liver was fine, but a mass was also discovered on my left kidney.
At a follow-up meeting in Edmonton, Alberta Canada with my childhood doctor she informed my mom and me that the large mass in my kidney was stage IV renal cell carcinoma because it had also spread to my lungs and liver. She told me that I had been lucky to have survived childhood cancer and had lived to the age of 33 and that I should prepare to die. We were mortified at this news.
In addition to being terrified, I had a feeling of helplessness, and felt that the news was unacceptable; we flew to the Mayo Clinic in Phoenix, Arizona to get a second opinion. After reviewing the imaging studies and test results those doctors felt that I had stage I renal cell carcinoma. While in Phoenix we received a call from a surgeon in Edmonton stating that he had a cancellation and that he could operate on me as soon as I got home. We decided to fly home and to have my remaining kidney removed; I have been on dialysis since July 1, 2015.
When the pathology report came back after the surgery it showed that the mass had been clear-cell renal cell carcinoma, stage TI a. The Mayo doctors had been correct. The suspected areas in my lung turned out to be scarring from radiation therapy I had as a child; no evidence of disease in the liver and lung were found.
I have been undergoing testing to get a living donor transplant since I began dialysis in 2015. No one in my immediate family is eligible, and numerous people had called to try to help. Finally a match was found from the husband of a cousin, but the lengthy process for approval consumed valuable time. When the potential donor had finally completed his testing and I had completed almost all of mine, the dialysis doctor ordered a CT scan to see if there was any reason my blood pressure was so low. While he suspected possible hardening of the arteries we were surprised to find that three lymph nodes were slightly enlarged. This delayed the procedure three months to see if any additional changes took place. While the difference in that scan was very small, in July 2017 a biopsy showed that the lymph nodes located in the lung cavity or the mediastinum were cancerous; once again I was diagnosed with stage IV RCC. We returned to Mayo where the doctors confirmed that diagnosis.
Back in Edmonton an oncologist told me about the availability of Sutent for my disease, but he recommended that I not start it right away since I felt absolutely healthy and had no symptoms. His plan was to wait until I became symptomatic and then to begin Sutent to prolong life as long as he could. I had been told about several other drugs that were available for treatment of kidney cancer by the doctors at Mayo and when I asked him about them and why he was not offering them to me he said it was because Sutent was the first line treatment even though the immunotherapy drugs may be better tolerated for a person on dialysis. After that conversation, he gave me some forms to fill out for a new immunotherapy combination. He is trying to get me approved for that. While I will have to pay a portion of the cost, it will be much cheaper than having to travel to the United States where I have no insurance coverage.
I am concerned about the delay of getting approval and not having any treatment at all in the meantime. While the immunotherapy combination sounds better, should I start taking something right away or wait? I hope something will get rid of this disease quickly; I sure would like to be around for my son a whole lot longer. I am no longer eligible for transplant until all signs of cancer are gone, and the latest scan on October 6 showed that things had slightly grown again.
I have started some natural supplements to try to help.
I am not sure what to do.
Since this story was written, Loraly was able to begin treatment with the new immunotherapy combination and is hopeful that it will combat her disease.
We’re hopeful too.