Many of you know this, or at least part of this story. But if you didn't know, or want to know all the details, read on!
In early February, I noticed a large lump in my left forearm. I thought maybe it was a muscle knot, I'd had too many experiences of going to the doctor where I was told they didn't see what I was talking about (after which I always thought it was such a waste of a $20 copay), and I was busy with a job search and life in general. It made my thumb and index finger tingle when you pushed on it, and it didn't go away. So finally, on March 21 I went to the doctor. I had an x-ray, which showed nothing since it was soft tissue (but you could still see where the screws from my previous hardware for 2009's elbow fracture), and was scheduled for an ultrasound. I had an ultrasound later that week, at which point I started getting worried. I could see the mass, and when they used Doppler I could see what I thought was blood flow. The mass was around or very close to the median nerve. The ultrasound was followed by an MRI, which was followed by a referral to an orthopedic oncologist at the University of Minnesota. I saw him on Friday, April 1, at which time I was told a surgical biopsy would need to be done (in case it was malignant, they would not want to remove all of it prior to radiation or chemo that would first shrink or consolidate the tumor). However, I was traveling that Sunday to Wilmington, NC, to start my new job with two weeks of on-site training, so we scheduled the biopsy for the Monday after I got home, the 18th.
When they do the biopsy, they freeze the specimen and look at it right away, so that they know whether or not they can remove the rest of the tumor. When I woke up, I was told that the tumor was malignant. A follow-up was scheduled to check the wound and to discuss next steps, and I was sent home. However, I had a lot of pain and couldn't straighten out my fingers, so that Thursday I went back to see the doctor and to get a splint. At this time, I learned that now they thought it was not malignant: diagnosis benign cellular schwannoma (as it originated in the Schwann cells that line the nerve). A follow-up surgery to remove the entire mass was scheduled for the 28th, but I had not yet completely exhaled...
Because I'd had quite a bit of pain after the first surgery, I was surprised when I didn't have much pain after this one - just a lot of numbness. I'd had a local block in addition to the general anesthesia, so I thought maybe it was due to that. But the pain never really came, and the numbness stayed. More than six weeks later, my thumb, index finger, and middle finger are numb. I can't feel anything or do any fine work (I can't pick up a tiny pill or handle a nail clipper).
A week after the surgery, I was called and asked to come see the surgeon the following day. This didn't seem like a good omen. And, sure enough, at the appointment I was told that the tumor was, indeed, malignant. The diagnosis was Malignant Peripheral Nerve Sheath Tumor (MPNST). The pathology had been confirmed by an expert at Mayo, the tumor was high grade (i.e., aggressive), and we needed to act quickly. At this point, there were three treatment options: radiation alone, radiation plus surgery that would remove enough muscle and nerve to leave the arm essentially useless (this was my left arm, and I'm left-handed), and amputation. What I took home was the possibility of amputation.
The next day Scott and I shared the information with my family, and that's when the information and phone calls really started flying. My sister Debra did a lot of research and also put me in touch with another orthopedic oncologist at the U. We started looking for places to go for a second opinion, and a trip to New York to see someone at Memorial Sloan Kettering started to materialize. My cousin offered to find out who treated a friend of his that had also had a sarcoma, this one in his stomach. This is how I got connected with Dr. Pollock at MD Anderson in Houston. In the email chain, I could see how quickly Dr. Pollock responded to my cousin's friend, so I was hopeful when I emailed him to introduce myself...
Sarcomas (and maybe most cancers) are treated by a team of physicians. The team following my case consisted of three orthopedic surgeons (including the one who had done my two surgeries and also the doctor with whom my sister had connected me), an oncologist, two radiation oncologists, a pathologist, and a doctor from the cancer survivor long-term follow-up clinic. I discussed my diagnosis with the doctor from the long-term follow-up clinic, who didn't think it was a good idea to receive further radiation, and suggested I meet a doctor who specializes in neurofibromatosis, a genetic condition associated with roughly 50% of MPNST cases.
In the meantime, Dr. Pollock had responded to my email (about 30 minutes after I sent it) and suggested we set up a time to talk on the phone. During that call, he told me that amputation would likely not be necessary - depending on whether the previous surgery had removed all traces of the tumor plus the surrounding tissue, I would either require follow-up alone (regular MRIs of my arm and chest), or radiation plus follow-up. We started to tentatively plan a visit to both New York and Houston.
My next appointment was back with the orthopedic surgeon at the University of Minnesota. I discussed my conversation with Dr. Pollock with him, and he agreed that he did not think that amputation would be necessary. In the case that nerve or functional muscle would need to be removed, there were options of nerve and/or tendon grafts (from the legs - I guess we just carry a lot of extraneous tissues there!) that could help with arm function. However, radiation impairs the healing process, so it might impact how well the graft would "take."
I was again feeling more encouraged at this point, but we were late for our next appointment, with the neurofibromatosis specialist. We had to wait quite a while for this appointment, and we were in a pediatric oncology clinic. To see all those kids suffering with cancer and treatment...well, things didn't seem so bad any more.
Imagine my surprise when the neurofibromatosis specialist told me that amputation is standard of care for MPNST! Just as I'd been starting to feel better about things, the emotional roller coaster plunged down again. I also learned that I did not have neurofibromatosis (based on the clinical exam they did not need to do a genetic test). Anyway, as soon as I got home I emailed Dr. Pollock, whose response was that amputation was "definitely not" standard of care.
Enough for now! More later...
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