Spent the morning with Margo at Mayo getting a pre-surgery check from Oncology and Surgery people. Monday, the 11th, Margo will have a “modified radical mastectomy” which, as we understand it, is taking off the left breast and most of the lymph nodes in the left armpit area.
The discussion among the several Mayo doctors including Lymph Clinic, Oncology, Dermatology and Surgery is what to do to keep Margo’s arm and hand from getting worse.
Sometime early last September, it began swelling up and getting hard—what is called “woody.” At first the thought was it may have been from an MRI where the vein was missed and the contrast agent, gadolinium, was injected into the arm—a reaction to that. However, after some tests including biopsies of both arms—one normal and one swollen, both had the same levels of gadolinium, sort of ruling that out.
Margo is the third woman going through this kind of chemo (out of probably dozens to hundreds) who have had an arm and hand reaction of this kind. So, not only do the doctors want to fix the arm, but they are want to figure out what made this quite problematic reaction occur in the 3 cases. That is the research side of things.
The treatment side is what to do with the hand and arm. After 3 weeks of massage and light therapy as well as nearly 6 months of tight elastic wrapping on 24 hours a day, the arm is not really swollen much bigger than normal, although the hand still is, but the arm is still “woody.” That means it feels very hard and tight under the skin.
As this is likely the lymph system with all of its nodes not performing right along with a possible tissue change – called scleroderma--, the question is will removing the lymph nodes on that side make the problem even worse, and should that influence the surgery (take out less nodes).
Since Margo had a lymph node biopsied back in July—and if was found to have some cancer cells, the normal procedure is to take them all out as the cancer had spread to at least the one of them that was checked, and a few others were somewhat swollen. Balancing that is that after chemo, the breast tumor and the lymph nodes all looked like the cancer had disappeared, so maybe lymph node sparing surgery would be better for the arm.
Each medical area worries about the problems they deal with, and then with a flurry of emails and discussions try to figure out the best compromise for the patient—bringing into the discussion their own experience, the latest research findings, and their own biases. Then they present the different options to the patient.
However, presenting that to the patient is somewhat difficult as most patients, including Margo don’t quite understand the special words used. So, in an attempt to help out, I spent a lot of time reading up on everything to do with the surgery, cancer, lymph system, and so on. I also can draw on 25 years having worked at Mayo with doctors so I don’t feel intimidated to stop them and say “I don’t understand what you just said.” I think doctors do think they are talking on the patient level when at times they are not—and too many patients are too shy to speak up and say they don’t know what is happening.
In the end, the patient is given the choice of treatment options, with recommendations from the doctors. Most folks are quite willing to accept the recommendations as they hope the doctors do know what they are doing!
Margo’s choice, is to slightly modified from the original plan. As the surgery is started, some tissue from lymph nodes and breast (as I understand it) are sent to be checked under the microscope immediately to see if there are cancer cells obviously present. If there are, then the normal “take them all” lymph node surgery proceeds; if not, some of the lymph nodes that are normal looking may be spared in the hopes that the arm will drain better.
Margo said, “I would rather have the surgery take them and deal with the arm and hand later than to have the cancer come back because we left some questionable nodes.” So that is the direction from us.
I think the most reassuring part of the whole process is to know that a half dozen doctors with different specialties discussed Margo’s special problems and thought a great deal about what to do and worried about doing the right thing enough to have spent time reading up on current research papers, and consulting widely and even, as Dr. Haddad, the oncologist said, lost sleep over it. Not only that, they reported the arm problem to the Mayo area that looks into why things go wrong, thus making sure Mayo folks will be trying to figure out how to prevent this from occurring with future patients—the quality control aspect of medicine.
Finally, to show that everyone who treats the patient at Mayo gets to be included in the process, not just folks with MD after their names, Jennifer, Margo’s physical therapist who has been massaging and wrapping her arm trying to bring the swelling down sent an email to the surgeon asking if the PT folks could follow on with the PT treatments after surgery (wrapping it while she is still in the hospital) and doing some special range of motion on her that normally wouldn’t be done for a week or so afterwards. The surgeon told us about the request and said that not only could they do it for Margo, but she had another person who could benefit from this too.
Another interesting fact: Most of Margo’s doctors including the oncologist, surgeon and Lymphedema person are women. Back when I started working at Mayo in 1980, there were few women doctors, and very very rarely a woman surgeon. In my own case, my family doctor, Myasthenia neurologist and endocrinologist are all women. They are all great.