Fifteen years later, I am astonished at how my life has been impacted and changed by a kidney cancer diagnosis. In 2005, I was 45, with a husband and young daughter. After complaining about a hard lump on the left side of my body, I was diagnosed with a 13 cm mass on my kidney.
I had a radical nephrectomy; pathology confirmed stage 2, clear cell renal cell carcinoma. There is actually a great prognosis overall for people with localized disease (cancer that hasn’t spread outside of the kidney). I showed no evidence of disease (NED) for 6 years until there were tumors found in my lungs which changed my prognosis of long term survival drastically.
After my initial surgery, had I known about clinical trials, possibly I could have been a candidate but at the time it was like visiting a foreign land, and I was lost. My hope is that now every patient is aware that these are an option. It is the only way we are going to find a cure.
I’ll never know if adjuvant therapy would have stopped my cancer from recurring because in 2005 research had not been completed and was not FDA approved at that time. Fortunately, since my diagnosis, evidence has shown that it can delay or possibly prevent recurrence for those with large tumors such as mine. I am so grateful to see that adjuvant therapy is now available if the patient chooses to have it.
Since the recurrence in 2011 to the lungs, cancer has metastasized all over my body. Brain, liver, pancreas, spine, bones and lymph nodes. I entered a clinical trial for the immunotherapy, Opdivo, prior to its approval. I also have been on different targeted therapies, had several lung surgeries, Gamma Knife to brain lesions, radiation to femur and pelvis, arm and spine. Cancer damaged my right humorous so I have had a rod placed there.
After all that though, I know it could be so much worse. I have no restrictions or constraints and no significant pain. I enjoy a pretty active life although I did retire two years ago.
We moved to the beach and I saw my daughter graduate high school, college and get married, so it hasn’t all been bad! And I keep getting good news, bad news, then great news yesterday as I was told that all my brain lesions are no longer visible two years after treatment in addition to the lung nodules!! I still have bone lesions in addition to scattered lesions throughout, but they are remaining stable as I search for the next new treatment.
The future of genetic testing and individualized medicine are truly on the way and I believe I have a good chance of living much longer with a good quality of life as I consider this a chronic disease for me. I do so because I planned for my death thru every hurdle. Fate has proved that wasn’t the case, so now I prepare for a great life instead!
As long as I can, I promise to keep marching forward in honor of those lost and for everyone else out there diagnosed with cancer. My dream is that I will be able to update you with more successful stories in another fifteen years.
That’s our dream too, Karen.
Karen Gibson is an ambassador for KCCure and lives in Florida.