Five years ago I wrote about my mother's knee
surgery. It was not a record-breaker for page hits, but I was able to see that
people were sharing it. I knew how helpful some of those things I learned would
have been to know before, so I got that, and I hope it helped people.
There are a lot of differences with this latest
medical procedure, not the least of which is that my peers are just as likely
to be the patient for a Mohs procedure, whereas we are still mostly a little
young for knee replacements. Also, there were many things about our case that
were atypical. Still, I learned things, some of which could be helpful to
others. Also, it's been on my brain.
It started with what seemed like a surprisingly
tough ingrown hair in 2014. We had showed it to Mom's general practitioner, and
she even got a referral to a dermatologist. We were advised that we could have
it removed but they usually work themselves out, so we left it.
A few months ago, Mom started complaining about it
more. It was on the back of her thigh, so sometimes it would bother her while
sitting. We made an appointment to have it removed, figuring we had allowed
enough time for it to work itself out, so we might as well. The dermatologist
shaved it off and sent it to the lab for a biopsy, and it came back malignant.
Yes, we worried that we had waited too long, but
this was the other thing: in the office, for the first time I saw that the
initial spot had expanded. It had been perfectly round, and now there was a
little bump extending out the lower right.
I suspect that change was connected to Mom's
discomfort. I think the first lesson here is pay attention. Pain means
something. Changes mean things. The meaning may not always be a big deal, but
it can be worth asking.
The second lesson was how valuable MyChart is. At
least, for The Portland Clinic it is MyChart. I think some providers use the
same name, mine for Legacy is different, but look there.
We got some information on the phone, but MyChart
was where I could see the scientific name - leiomyosarcoma - and look up more
information. This was where I could see that the dermatologist had consulted
with a dermatopathologist - which was comforting. Most comforting was the note
saying that in 2011 they had determined that when this occurs in the skin it
has never been shown to metastasize into cancer so the "sarcoma"
suffix is not appropriate in that case. All of the medical staff has been good
about answering questions, but it takes time to process things. MyChart was a
big help.
Although it was not malignant in the sense of likely
to metastasize, it was still fast-growing - a trait common to the condition
whether it happens in skin or muscle. The call notifying us that it was
malignant also set up an appointment to remove and test more. That biopsy also
showed spreading. That was when the Mohs procedure was recommended.
Mohs surgery is a microscopically controlled
surgery, aiming to protect the skin. It is primarily used with skin cancer,
because that is so often on thin layers of skin, and so often on the face, that
preserving as much of the tissue as possible is needed. This is accomplished
not just by the precision of the cuts, but also by testing the area immediately
so you can tell if you got it all. Sending it to a lab takes time, and then you
may not be able to get back to the area it had spread into until the previous
cut heals, allowing more time for spreading. If you look on the Wikipedia entry
for Mohs surgery, leiomyosarcoma is the last of the surgical indications, but
after two failed attempts at removal, it was a completely logical step.
Testing immediately still takes an hour, but the
nice thing about that is that patients can return to the waiting room. We had
two excisions - the first time did not get everything, but the second did - but
then we had to wait for Mom to get her stitches, so we took her out to get some
lunch.
They had indicated that would be a possibility, but I
thought it was strange; they cut you and you go to lunch? Yes! They just
bandaged her each time. Because of the waiting for testing, there are several
patients at once.
Most of the patients had bandages on their faces. I
mention this because bandaging the back of the thigh is more difficult. Every
time Mom pulled her pants on or off, the bandages were loosened. The first time
it stayed in her pants, and I was the one who found it. (I told her to wear a
skirt.)
That was another thing that was different. Most
patients probably were not taking people in with them, but with my mother's
dementia, I tried to be with her as much as possible. For the shaving and the
other excision our dermatologist did, I was with her the entire time. Here, they
sent me away for actual cutting and stitching, but I was there for everything
else. I suspect that was unusual because when I was holding that bandage and
seeing that hole in my mother's thigh, the assistant suddenly asked if I was
okay looking at it, and I didn't get the impression that it comes up that
often. (I'm not squeamish.)
We had to remind Mom a lot, and reassure her a lot
that everything would be okay. I totally believed that everything would go fine
every time I said it, but it was still such a relief after the second excision
when the tests showed they had gotten it all. The emotions may not be logical,
but they are real.
And that is probably the starkest contrast to the
first knee replacement. After hours of major surgery alone in a hospital where
my family kept asking for updates but I hadn't gotten any, I just burst into
tears. Here, I was relieved, but not nearly as worn down. And it was a long day
- we were there six hours - but still completely different.
So I will totally say that Mohs surgery is easier
than major surgery for patients and families, but that's not why you do it. You
do it because it works.
Thank you Dr. Rohrback, Dr. Kao, Keleigh, and
everyone who helped.
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