A year ago, I was getting ready for heart surgery. The surgeon ordered a series of CT scans to plan a rather complex minimally invasive procedure. The scan showed I had multiple enlarged lymph nodes, with no previous underlying cause. The hospital then did a full-body PET-CT scan, and it showed even more suspicious nodes--from one armpit, through my deep abdomen, and to the groin on the opposite side. This report was marked "suspicious for lymphoma."
My heart surgery was put on pause.
I then had a biopsy of my armpit lymph node. (At first, they were going to do groin, but the armpit sounded less uncomfortable, so they switched). The diagnosis was follicular lymphoma, stage 3, grade 1-2.
Follicular lymphoma is a cancer of the lymphocytes, part of the immune system. It's a blood cancer since lymphocytes are found in the blood and lymph fluid. It's usually an "indolent" cancer, meaning it grows very slowly. People can sometimes go for many years without treatment. There is no cure. Treatment takes a harsh toll on the body, and treating early--before symptoms arise--does not convey any survival benefit. So in many patients, including me, the best thing is "watch and wait", which probably sounds familiar to those of you who have prostate cancer.
An oncologist reviewed my charts and gave the green light for heart surgery, which was a big success. A few months after recovering, I started regular visits to the oncologist specializing in follicular lymphoma. Every 3 months I get a physical exam and a few blood tests. Once a year I'm going to have CT scans to check on the size of the affected lymph nodes, spleen, and liver, and to see if there are any newly involved nodes.
As to my stage being 3, that's not as bad as it sounds. It just means the lymphoma is on both sides of my diaphragm (the diaphragm is used as a convenient dividing line). Most follicular lymphoma patients are diagnosed at stage 3 or 4. It doesn't mean a dire prognosis like it does in some other cancers--it's simply an indication of spread.
My first regular CT scan is this week. I love that there's very little waiting around for results at the cancer center I go to. I'll have the scan and blood tests early in the morning, and then by lunch I'll have the results in my portal. Shortly after that, I'll go over everything with the doc. Hopefully I won't need any treatment. Treatment, should I need it now, would be immunochemotherapy, a combination of immunotherapy and chemotherapy. The big drug in this, and one that really changed the landscape when it was introduced, is rituximab (Rituxan®). We are now, in fact, living in the "rituximab era" where overall survival (OS) time for follicular lymphoma is now approaching 20 years, which is way higher than it was before the drug was introduced. For most patients, FL is now thought of as a chronic disease. Although survival time is very long, when FL patients die, the leading cause of death is FL, even though most die of something else. A cure would change that, and change the lives of patients who live through cycles of relapse, treatment, and remission.
Anyway, that's the situation from here. Prostate cancer beaten, but lymphoma is destined to be my companion for life. That could change if a cure is found--please support organizations like these:
- Leukemia & Lymphoma Society: https://www.lls.org/
- Lymphoma Research Foundation: https://lymphoma.org/
- Follicular Lymphoma Foundation (a new foundation in the UK--the only foundation solely focused on follicular lymphoma): https://www.theflf.org/
