Frustration...

Current status: waiting to schedule third arm surgery (fourth surgery in all). Waiting has been a common activity for the last six weeks.

In mid-May I had an arm and shoulder MRI that showed an enlarged lymph node in the armpit, and probable residual tumor in the left forearm. This was pointed out by Dr. Pollock at MD Anderson Cancer Center in Houston, who had received a copy of the MRI when we went there for a second opinion. When I mentioned it to my orthopedic surgeon here, he discussed another surgery to remove any remaining tumor (but that the abnormality seen in the MRI could also be post-surgical edema), and to "clean up" around the tumor. While this would involve removal of muscle tissue around the nerve and perhaps the nerve lining (I'm still unclear as to whether there's a separate lining that's not the sheath cells), it should not impact long-term function. He also pointed out the enlarged lymph node (which he said could very well be due to the previous arm surgery) and suggested we see another doctor to see about a lymph node dissection done at the same time as the next arm surgery (the orthopedic surgeon doesn't work on lymph nodes). So last Friday, I saw the lymph node doctor, who said he didn't see any abnormal lymph nodes and that nothing further needed to be done. I should be relieved. But I only felt frustrated and confused. It's true that it's extremely rare for MPNST to spread to the lymph nodes, especially in the absence of spreading to distant organs, but I would rather err on the conservative side! So Friday afternoon I emailed Dr. Pollock, who of course responded within a half hour - but he was in the OR so gave me his cell and asked for me to call that evening or the next (Saturday!) morning.

Saturday I talked to Dr. Pollock, who suggested an ultrasound of the lymph nodes, with an ultrasound-guided needle biopsy of the enlarged lymph node if it was still present. Regarding the arm surgery, Dr. Pollock himself would do it, but he would have a reconstructive surgeon on hand in case removal of additional nerve or muscle was needed, necessitating a nerve or tendon graft, and also a neurosurgeon, in case microsurgery of the nerve was required. They would also want another arm MRI shortly before the surgery. This sense of coordination and pro-activeness, on top of Dr. Pollock's responsiveness, got me thinking more about going to MD Anderson for the surgery. Unfortunately, Dr. Pollock will be out of the country from the 19th June until 2nd July, pushing everything back even more.

I still wanted to talk to my doctor here in order to help me make the decision. I paged his nurse, who is usually very good about getting back to me, on Monday afternoon. No response. Paged her again on Tuesday, after which she called me. I updated her on the above, and asked 1) if they would consider moving forward with an ultrasound even if the lymph node expert said there's nothing to worry about, and 2) are additional surgeons on hand in case they are needed (she did say that this doctor does his own reconstructive surgery (which makes sense since he's an orthopedic surgeon and Dr. Pollock is a surgical oncologist specializing in sarcomas), but that sometimes he does have a plastic surgeon available - but that this would not likely be necessary in my case), in order to prevent needing a fourth arm surgery. I didn't ask about 3) what happens to my care at the University if I choose to have the surgery in Houston - where do I go for follow-ups, will they still see me? And can I still do the radiation here (I'd really prefer not to spend 5-6 weeks in Houston this summer!)? Anyway, I was told she'd discuss with the doctor during clinic the following day, and either she or the doctor would get back to me toward the end of the day. So yesterday, my phone rang around 5:30, and it was the nurse, telling me she hadn't had the opportunity to discuss it with him, and that she would be in training all day today (Thursday), but that it would be first priority Friday morning.

I'd been hoping to talk to the doctor early in the week so that I could make a decision this week. Hmm. It is, however, yet another example of why I'm so frustrated by the U and so impressed by MD Anderson...