My Journey with MFS: The Treatment Plan

*MFS stands for myxofibrosarcoma (mix-O-fibro-sarcoma)*

While you would think that many questions about treatment plans would be a priority for me with the medical team.  They weren’t.  I wanted to know more about the complicated relationship between Larry (aka the cyst), MFS, and the refrigerator door incident.    And here is the down-and-dirty…the cyst was NEVER a cyst, it was always MFS.  The refrigerator door was just an unfortunate incident and the MFS was a result of just plain old, bad luck, as one of the Oncologists put it.

We also learned that MFS is very rare, as only 500 people in the country are diagnosed with it each year. 

Treatment is going to be a bit intense and here is what I know today with the caveat, that it only takes one one MRI or CT scan to require a hard pivot to a new plan.

Speaking of scans.  I will be getting CT scans of my chest pretty routinely (like every 2 weeks) for a while and then the scans will decrease in frequency to every month, then every 3 months, then every 6 months and so on.  For the next 5+ years of my life, I will have some routine dates with a CT machine.  Why?  MFS has a high recurrence rate and can metastasize in your lungs so the medical team will keep tabs on what my chest looks like. Fun.

Ok, so what is the treatment plan as of today?

It will start with another elbow surgery to ensure that as much of the MFS cells are removed.  This will be a much more intense surgery as they need to expand the area around my elbow to include an area where my drain from my previous surgery was put in. There is some concern that the drain may have dragged (my words) cancer cells from Larry’s home on my elbow to further up my arm. (Remember, Larry was suppose to be a benign cyst on my elbow and never a rare sarcoma. So putting a drain in made sound surgical sense.) If margins are cancer free then that will conclude the surgery portion of the treatment.  If not, more surgery lies ahead for me until margins look good.

There is a bunch of temporary closures and wound care with the surgery while the soft tissue is sent to pathology to look at the margins. I will skip over those details because..well, it’s probably the part I’m LEAST looking forward to and are just… pretty gross. A plastic surgeon will join the team at this point and I will receive a skin graft on my elbow as the result of the surgery.

Once surgery is done, I will need to heal from it for about 6-8 weeks.  After that, I will undergo rigorous radiation treatment.  5-6 weeks, 5 days a week-kind of rigorous.  

When we were on our third appointment of the day in Boston, learning about the treatment plan, I became so overwhelmed.  Not because of the intensity of the treatment but because of the overwhelming logistics of commuting to/from Boston on a frequency I am not accustomed to, logistics of daily radiation treatments most likely in Boston, and logistics of maintaining a sense of normal for our daughter. 

It’s a lot.  It’s going to be a lot.  As I’m sure my colleagues would agree, I’m not one to delegate easily and like to do a lot of things myself.  And the harsh reality is..I’m going to need help. And I am reminded, that my husband, daughter, and I have an amazing support network and help is just one phone call or text away.

So..I’ve started small. Tasking people with telling others about my news. Team leaders, of sorts, that get all the nitty-gritty details and who can relay to others. And while today, as I write this, I’m not sure beyond that what help needs to look like, I will lean into family, friends who are like family, and strangers who are like friends, and ask for the help.

As always, thanks for following along! ~ Natalie