My Cancer Story/Journey so far:
I was diagnosed 21 years ago at age 44 with low grade indolent B cell follicular lymphoma.
I went for a routine colonoscopy and they found a very small swollen lymph node in my ileum. I had absolutely no symptoms at all. After two colonoscopies in two weeks and four medical consultations I went through CHOP chemotherapy. Today they would have just done "wait and watch." At the end of my treatment even my oncologist said if I had come to him without other recommendations he would have done nothing. Anyway that is history.
Sometime in 2000, I had fluids in the pleural lining of my lungs, which made my breathing more labored. Although all the oncologists that I went to for second or third options were recommending Rituxan and a chemo drug, I opted for Rituxan alone (8 infusions once per week), which was acceptable to the oncologist I had chosen to treat me. I also had radiation to shrink the lymph node in my stomach that was blocking the normal flow of fluids that was backing up into my lungs as well as 30 thoracenteses to drain the fluids from my lungs. Got through that experience and two years later had fluid in my lungs again and got Rituxan (8 infusions once per week) and a pleural catheter inserted for a month and got better.
After that we decided to go on a maintenance regime of Rituxan once a month for two years. It is now four years plus after the maintenance treatment and I feel fine. Since I have no symptoms and my blood work is good my oncologist has not ordered a PET scan. I see him every three to four months.
Low grade lymphoma at this time is not curable so I have come to accept that I will most likely go through some disease again. Fortunately I respond well to Rituxan and since it is only a monoclonal antibody there are not the horrid side effects of chemo and it does not destroy the good cells. I turned 65 years old in September and believe me, I'm grateful for every day of health. It sucks to have cancer and although low grade lymphoma is not curable it is treatable and many new less toxin drugs are on the horizon thanks to research.
Living with my type of cancer is like living with a chronic disease. Fortunately we get remissions and go on with our lives. And of course we hope that our cancer does not turn into a more aggressive form of cancer. My theory on getting treatment is to try the least toxic treatment first and if that doesn't work then explore chemo options. Believe me not all doctors would agree with that, but so far I have managed my disease well and it is 21 years later and I am still on this earth living a full life.