I was diagnosed with metastatic synovial sarcoma in June 2013. Since then, I've been sending out emails updating friends and family anytime I have news to share. To catch you all up to the present, here is the first of those emails. I'll post the others as well.
June 14th, 2013
Hello All,
I have some unfortunate health news to share with you. I've been meaning to get in touch with many of you, but I wanted to wait until I knew exactly what was going on.
About a month ago I had a routine doctors appointment during which the nurse practitioner checked out the back of my right knee as I had been experiencing minor pain for about a year that I believed was a pulled muscle or something similar. After feeling my knee the she decided there was something in there, and ordered an ultrasound. This quickly lead to an MRI. The images yielded a suspicious looking "mass", so my PCP referred me to Dana Farber Cancer Institute to have the pros check me out.
Based on our discussions with Drs. Ready (surgeon) and Butrynski (oncologist), they also thought the mass looked suspicious, saying it could be Sarcoma, a rare soft tissue cancer. At their suggestion, I had a biopsy last week. Yesterday, I went in for a CT scan of my upper body, since Sarcomas often spread in the lungs, abdomen and pelvis. Afterwards, Tom and I met with Dr. Ready to look at the results of the biopsy and the CT scan images. Based on this information, he confirmed that the mass in my leg is a malignant Synovial Sarcoma tumor, an ever rarer type of an already rare cancer (about 1,000 people are diagnosed with it per year in the US, versus all cancers at 1.6 million). While my pelvis and abdomen are clear, they also found several small nodes ranging in size in my lungs, which are likely to be the same Sarcoma.
After speaking with Dr. Ready, we also spoke with Maggie, the nurse practitioner from Dr. Butrynski's office (Dr. B was away due to a family emergency), as well as another oncologist Dr. Morgan (good name). They all said that this type of cancer responds best to certain types of chemotherapy in addition to radiation, so our next steps will be to figure out when and what type of chemo to do, and if we can do radiation at the same time. Ideally, the treatments will reduce the size of the tumor and possibly eradicate some of the nodes, so that surgery later will be easier and more successful. We also discussed the effect of treatment on fertility, so we are planning on meeting with a reproductive endocrinologist to discuss the options we have for that as well.
So, right now I feel like we are in the eye of the storm: waiting to get everything sorted out and scheduled, and soon we will have a plan and treatment will start happening. As you might expect, Tom and I are rather shocked that this is happening (especially because I'm still 14 months away from being 30 and "old"), but being the nerdy information-loving people we are, we are channeling all our energy into learning what we can and actively trying to enjoy every other part of our life as we usually would. We are so excitedly looking forward to June 28th when we close on our first house, and spend most of our time planning all the projects we want to do. I also have a week and a half left of my first year as a full-time art teacher in Framingham, so I have a plethora of end-of-the-year things to keep my mind occupied.
For those of you who have already gotten in touch with us, we truly, truly appreciate your thoughts, prayers, and general support, and while we might not respond to emails or phone calls in a timely manner - or at all - we appreciate hearing your words, and are constantly thankful we have the support system that we do. Thank you.
We will continue to do our best to keep folks informed, and feel free to share this email with others.
Love and sparkly things,
-T&A
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