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HCL and Secondary Cancers

Posted Jul 15 2009 8:09pm
A lot of the HCL blogs and discussion boards that I follow have patients who want to know more about secondary cancers, so I thought I'd do some more research into the subject.

An intensive study was conducted by NIH which examined the risk of secondary cancers in 3104 2 month + survivors of HCL. It found that the cumulative probability of a secondary cancer in 25 year survivors was 32%, but not everyone in the study lived that long. Most patients usually die of other natural causes first, but the finding is a major bummer for the younger than average patients like myself. Statistically, the mean follow up time with patients in the study was 6.5 years. Some died, some moved, some stopped participating out of apathy.

Standard incidence ratio (SIR) is a term used to compare the rate of a cancer among a particular group to the general healthy population; hence, for healthy average Joes, the SIR of a particular type of cancer is one. For HCL'ers, the SIR for Hodgkin lymphoma is 6.61 (6.6 times more likely to get it than a normal, healthy individual). The SIR for non-Hodgkin lymphoma is 5.03. Thyroid is 3.56. Lucky for me, the SIR for lung cancer is less than the normal population, coming in at only 0.63, but that's probably just due to the fact that people stop smoking when they find out they have leukemia -- a macroscopic trend which doesn't really transcend to individual risk reduction. Overall, the SIR for all secondary cancers over the HCL population is 1.24 -- or 24% greater than average.

In fact, HCL isn't the first cancer I've been treated for. I was treated for a basal cell carcinoma ( BCC ) in late July, 2007, so it's likely I've already experienced a secondary cancer from HCL even though it was treated prior to the official HCL diagnosis. BCC is a type of skin cancer which doesn't metastasize but can become disfiguring if left untreated. One of the nurses at NCI told me they tend to see more than the average number of skin cancers in patients with HCL. Be forewarned, I'm going to show you some pictures of my surgery below, so if you're squeemish, don't read on.

My BCC started as a persistent pimple on my left nasal ala -- mainly in the crease between my nostril and cheek. Over the course of several months, it gradually turned into a surface rash that sometimes bled when I showered -- cycling between healing and bleeding. At the time, my platelets were already down to the low end of normal, so this may have exacerbated the bleeding. Soon, I started feeling throbbing in the region and feared that veins to a tumor might be forming so I went in to get it checked out. With one look, my dermatologist knew she had to take a biopsy and sure enough the pathologist determined it was cancer.

As promised, here are the pre-close and post-close pictures from the Mohs surgery. Mohs surgeons are trained pathologists. This is required because the surgery is conducted in multiple phases to minimize cosmetic impact while ensuring that all the roots of the cancer are cut out. The surgeon uses a special dye to examine each sample of excised skin under a microscope and ensure that enough healthy margin exists at the edge of the cancer.

My surgery took 4 phases because it was rooted much deeper than anticipated. I was lucky that it was in the crease of my nose. The doctor did a great job, and most people can't even tell that I ever had surgery. It took extra long for him to cauterize my flesh and stop the bleeding, and he noted that to me when he did the surgery. That led to my Dr.'s appt. in October of 2007 which first noted that my platelets were at the low end of normal (140). Come to think of it, I think that's one of the reasons I demanded a CBC (or "the works" as I called it) at the time. Here's a link to a short video on Mohs surgery.

Anyway, I don't want to scare any of you HCL'ers out there, but you do need to be aware that you should take extra precautions, avoid the sun moreso than others, and live as healthy a lifestyle as possible after treatment.

My next blood test is in two weeks. I follow a lot of the discussion groups and many fellow HCL'ers who were treated at the same time as me are already in remission. I'm jealous but very hopeful that my blood tests will show significant improvement next time.

Cheers,
Jon
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