We're done!

I'll start with an understatement: this has been a very good week.

On Wednesday morning, after conferring with the sarcoma group at Dana Farber, my medical oncologist at Hopkins gave us some great news. Just to make sure that nothing was going to change (we were a bit wary...), we've kept quiet for a couple of days.

Based on my clinical course and examination of my tumor specimen, I've been given a diagnosis of angiomatoid malignant fibrous histiocytoma. Despite the long and frightening name, this is REALLY good. The bottom line: I'm likely to do very well (i.e., the cancer is not likely to come back) and I don't need adjuvant chemotherapy.

I assume you might have a question or two...

What is an angiomatoid malignant fibrous histiocytoma?
As we're getting used to these days, angiomatoid malignant fibrous histiocytoma is a rare cancer. It was first described in 1979 and, originally, was thought to be a type of malignant fibrous histiocytoma (often abbreviated MFH). MFH is a type of sarcoma (i.e., cancer of connective and supportive tissue) that is typically seen in older adults and has a significant risk of local and distant recurrence.

Since 1979, several studies have found that angiomatoid MFH tends to behave very differently than a more typical MFH. For example, it's seen in young patients and is most likely to be located in the skin. Importantly for us, it has a far better prognosis than MFH. For this reason, some pathologists place the term malignant in quotes and some have dropped it all together.

Is this still cancer?
Yes - absolutely. This tumor has come back in some patients, both locally and/or distantly. However, compared with my previous diagnosis (Ewing's family sarcoma), the chance of this is low. It still could happen, and we'll be watching closely in case it does.

Why don't I need adjuvant chemotherapy?
Chemotherapy can have side effects, both during treatment (e.g., severe infections due to a weakened immune system) and later in life (e.g., heart, liver, or kidney damage). If the risk of cancer coming back is higher than the risk of these side effects, then - generally speaking - it's worth receiving chemotherapy. However, if the risk of cancer coming back is smaller than these risks, then it's not a good idea. I now fall into the latter group.

What kind of follow up will I have?
For the first two years, I'll have a clinical exam, CT scan of my lungs, and an MRI of my left hip/butt once every three months. Then, until five years, I'll do this every six months. Finally, until ten years from now, we'll repeat once a year.

What's next?
My Hickman catheter comes out Friday (good riddance), I'll keep shaving my head (we've grown to like it), and I get to start changing diapers again (yes, even cancer had it's perks). Especially now, we are so very appreciative of everyone's support and prayers - it's been truly overwhelming. Thank you.