The Follicular Lymphoma Saga Continues

Yesterday, I saw my oncologist and he reviewed my most recent annual CT scan with me. One of the biggest issues with follicular lymphoma, as with some other blood cancers, is that it is considered treatable, but chronic and incurable, so remission isn’t quite the relief it could be. Five years ago, I finished treatment and was determined to be NED (no evidence of disease), and since then, until my most recent CT scan, there’s been no sign of recurrence. This scan was, disturbingly, different.

Follicular lymphoma is a white cell cancer, a mutated antibody cell, which is seen in the lymph nodes, a part of the immune system which filters bacteria and viruses from lymphatic fluid; the cancerous cells build in the lymph nodes instead of being filtered out, because for whatever reason, the body doesn’t kill them as invading cells (which is pretty much the definition of every type of cancer — which mutated cells aren’t killed determines which type of cancer it is). Because lymph circulates throughout the body, unless the cancer is diagnosed early, when it’s still restricted to a few nodes that are near each other, surgery doesn’t help, because the cancerous cells are already circulating throughout the body. So, monitoring for follicular lymphoma involves regularly checking on lymph nodes. Two of mine, in the right lower mesenteric area — so between my right kidney and my pelvis, give or take — are enlarged. They should be less than half a centimeter, but those two are 1.5 centimeters each. It could be a lot of things; I could have an infection, or something could be irritating my intestines in that area, or it could be a recurrence of follicular lymphoma. There’s no way to be sure based just on the scan.

My oncologist gave me several options: a fine needle biopsy, a course of immunotherapy, or waiting a few months for another CT scan to see if anything changes. A fine needle biopsy is just what it sounds like: a very thin needle is inserted into a lymph node to get a cell sample; the problem is, if the cells collected don’t show cancer, it doesn’t necessarily rule anything out, it just means that none of them were drawn into the syringe, not that there aren’t any there. Then, too, given where the nodes are, there’s a chance my intestines would be in the way, and could be perforated, and also that, if there is cancer there and it’s restricted to those particular lymph nodes, it could be spread by the insertion of the needle.

Immunotherapy — four rounds of Rituxan (rituximab), a medication that targets and kills B cells, the type of antibody cell that mutates into follicular lymphoma — has its own appeal and issues. The biggest issue is that it suppresses the immune system, leaving the person who gets it at higher risk for infection, so if it is an infection causing the inflammation, it could get worse and be harder to treat. There’s also no way to know, if the lymph nodes shrink after that, what the actual cause was. There’s also the risk of a few cells escaping treatment, and those cells would be more likely to be resistant to future treatments with the same medication.

The third option is to get another CT scan in a few months, to see if anything has changed. This is the least invasive, and it’s pretty common with slow-growing cancers to monitor them for changes, and not provide treatment right away, unless there are symptoms, which there haven’t been. There are side effects to treatments, and treating early can mean a greater chance of needing to treat again later, or needing additional treatment sooner. When I was first diagnosed, I was treated right away because it was at an advanced stage. If this really is a recurrence, it’s so early that I would probably not be treated anyway.

All of this was impacted by a conversation I could hear through the wall between my oncologist and his intern (I don’t think they realize the walls are that thin), about potential symptoms, such as the slight weight loss I experienced after adopting a very active dog.

After considering everything, I chose to wait and get another scan, but it makes me nervous — what if the cancer spreads significantly before the next scan? My oncologist thinks it was spreading for five to 10 years before diagnosis, so I know a few months won’t make a difference, really, but it still makes me nervous. There are so many uncertainties, and I may yet ask for the biopsy; I just don’t know. I’m not sure I want to know; I’m also not sure that knowing would change anything, as “watch and wait” — knowing you have cancer but aren’t getting treated yet, because the side effects of treatment outweigh the side effects of waiting — is common with this type of cancer. I guess I’ll just keep playing with my dog.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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