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.
