More than ten years after I had radiation on my breast, I
developed a skin inflammation on the radiated site. It came on suddenly, a
series of angry red veins branching across my chest where my left breast had
been, with occasional darker, pooled spots, all in a rectangular shape matching
the area where I had been radiated. My skin was smooth, with no bumps or lumps.
It was November 2016, a year and a half after my second bout
of triple-negative breast cancer. My cancer story in a nutshell: I have had
TNBC twice: once
in 2006 and once
in 2015. The second was not a recurrence, but a second primary cancer. For
the first cancer, I had a lumpectomy, chemo, and radiation. The second time,
with a tumor less than half a centimeter, I had a double mastectomy without
reconstruction.
I had absolutely no problems with radiation burns while
undergoing my original treatment, nor in the intervening ten years, although I
do think it highly possible radiation was one cause of my second cancer.
The mastectomy, though, did not go all that smoothly. I
developed seromas for months afterward, the last one being essentially a
blood-filled bruise. The surgeon drained it and, within days, it had healed,
but for a few days, the skin looked a little like the inflammation I was now
seeing. At that time, my surgeon said the skin was weakened by the long-ago
radiation and became even more damaged by the more recent surgery.
I went for a year after that last seroma with what might be
considered normal healing after a mastectomy: some arm and incision pain, but
nothing unusual. Now something was up. But what?
Radiation Recall
Radiation Recall
After checking online, I self-diagnosed radiation
recall, which can occur years after radiation. Most cases are drug-related,
caused when patients are given cancer-fighting drugs such as anthracyclines like adriamycin,
after radiation. I had been given adriamycin, but that was ten years ago. Why
would I now be having a reaction? It had to be something else. Chat rooms were
full of discussions of women with radiation recall, with causes all over the
board: scented lotions, wool, new prescriptions or over-the-counter drugs.
Treatments were equally varied: antihistamines,
steroid creams, and anti-inflammatory
drugs such as ibuprofen.
Some mentioned that chest inflammation could be lymphedema
of the trunk, which made a little sense, as my case was accompanied by pain
in my upper arm. But mine was milder than those I saw online. I had none of the
swelling that was indicative of lymphedema.
The basic message from my research, though, was encouraging:
Radiation recall is not usually a sign of a new cancer and is most likely a skin
issue, some form of dermatitis.
My inflammation looked far, far better than photos I saw
online, which showed chests that were completely red, often scaly. Mine looked
modest in comparison. The closest was this
one, which they call photo recall. Most other images made me thank my lucky
stars.
As I was trying to figure this all out, a friend who is 11
years past her TNBC diagnosis messaged me and said that she has been diagnosed
with radiation
fibrosis. So I researched that, but I had none of the scarring that is
characteristic of that syndrome. Still, it is a late effect for some breast
cancer patients and seems worse for head,
neck and throat cancer patients. Interestingly, a University of
Iowa clinical trial recommended Vitamin E for radiation fibrosis, but
vitamin E turned my skin red every time. That was one of the few direct effects
I could see, and it ran contrary to much of what I read in general about
soothing breasts to help them heal after surgery and to reduce radiation
effects.
At the same time my chest got inflamed, I had throat phlegm
that would not clear up and I remembered my friend Marilyn, who thought she had
bad allergies but ended up having a recurrence of TNBC on her chest wall. I decided
that was what was happening to me—the phlegm, as in Marilyn’s case, was an
indication of a tumor, and the skin inflammation was just verification.
Clearly, I was dying, because that is the conclusion we reach in these
situations, right? But I went to my
primary care doctor for a professional assessment, just to be sure.
By the day of my appointment, the inflammation had almost
disappeared—only a couple inflamed veins remained. The doc had to use a
flashlight to see the reddened veins and was, not surprisingly, skeptical of my
worries. As for the phlegm, she looked down my throat with a scope and felt my
lymph nodes. Nothing again.
“Could this be stress?” I asked her. This happened right
after the election and I am a Democrat, so stress is my best buddy these days.
“If you want it to be,” she answered. I mentally put that on my list of
Obnoxious Things Doctors Have Said To Me.
But she told me that if that inflammation got worse or if
the throat didn't get better in two weeks, to come back.
The next day, the skin got redder, but rather than heading
back to the doctor, I began a diary of possible causes. The phlegm soon
disappeared, so my focus returned to my skin, to this being a dermatological
issue.
Searching For a Cause
Searching For a Cause
I had worn a wool sweater the day the inflammation came on,
with a nylon camisole underneath. That seemed like an obvious cause, so I
stopped wearing any synthetics and used only cotton. I have worse only cotton
in the five months since then. No real change, although the inflammation gets
better for a bit, then worse again.
I use organic, unscented laundry soap, but I changed brands.
No help.
I tried steroid creams and ibuprofen but noted no obvious
cause and effect. I upped my dose of antihistamines. Nothing, except I got
pretty sleepy.
I began to suspect some of the supplements I was taking,
including a new multivitamin I began using the day after all this happened. Why
it would have caused anything the day before I started it makes no sense, but I
stopped it anyway. I even moderated my yoga, as it often hurts my affected arm
and I thought maybe that could be related to the rash. So I cut out anything
that put pressure on the arm.
Again, the inflammation got better, then it got
worse, and I could not determine any common factors. I concluded that it must be
a mix of causes, some sort of perfect biological storm.
Then, I got a series of bumps along my incision. One was
about a quarter of an inch in diameter. Again, I was clearly dying. If cancer
recurs, it often comes as a rash at the incision site. This time, I made an
appointment with my surgeon. But, by the time that appointment came, the bumps
had shrunk and the inflammation as a whole had greatly reduced.
He came in somber-faced and I tried to tell him I was sure I
had overreacted, but he wanted to go over my entire medical history before he
looked at the rash. I was there with a recurrence, he thought, and that was not
good news. Once he saw my chest, though, he smiled and said the bumps were
clearly not tumors. Nevertheless, he wanted me to get a chest x-ray. More radiation? I asked. Low doses, he said. He wanted to make
sure this had not spread to my lungs. Reluctantly, I agreed, acknowledging that
by deciding to go to the surgeon in the first place, I at least subconsciously
wanted the kind of answer that additional tests would give.
He called me the next day—my lungs were clear, except for
the signs of COPD, which I knew I had. No tumors.
That day, the skin bloomed a bright purple again. A reaction
to the x-ray? Who knows, but it’s hard to discount that possibility. But it
healed a bit, then bloomed bright and angry again. So I went back to my diary,
back to trying to figure out what was going on with my blasted chest.
I began to suspect the tonic water in my nightly gin and
tonic, a drink I know I am better off without, so I cut it out and replaced it
with healthier black cherry juice without gin. The rash again got better, then
worse. There just seemed no pattern.
Three weeks after seeing the surgeon, I had my yearly
appointment with the dermatologist. He looked at the inflammation, said it was
probably harmless irritation, but took a biopsy nevertheless. Again, I was
annoyed at the extra testing, but equally curious to see what it would show.
The result: my skin was inflamed, but there were no signs of cancer. The
pathologists suggested the inflammation was caused by a new drug or by contact
with an allergen of some sort.
So, three doctors, an x-ray, and a biopsy later, I was right
back where I was with my original Google search. This was likely caused by
something I had injected or exposed my skin to. Except for one thing: after the
biopsy, the rash cleared up almost entirely. More than ever before. Now, three
weeks later, it is still mostly clear—just a few faint lines remain, but those
might always be there. Gone are the red veins, the purple pools.
Why?
A Partial Answer
A Partial Answer
After the biopsy, I was advised not to shower that area—I
had to gently clean it with a cloth. No hot water flowing over it. So, my
dermatologist might have accidentally solved at least part of my mystery. I had
been taking long showers to alleviate my stress after the election and, if all
that hot water wasn't the cause, it was certainly exacerbating my inflammation.
I’ve cut down on my showers, which is an environmentally kind thing to do in
the first place. And my chest now looks almost normal, in the context of chests
that have been radiated, deflated, and deformed.
Eventually, perhaps, I will reintroduce some of the
elements—my multivitamins, yoga arm exercises, tonic water—bit by bit and see
what happens. Maybe I will eventually figure out what caused this, and maybe
eventually my skin will be completely clear and this will all be a weird
memory. What is obvious is that docs have no idea.
And right now, the only dark marks on my chest are the two
spots where the doc took the biopsy. But even they are healing nicely.
Mystery unsolved, except there are no signs of cancer. And
that, as always, is a good thing.
