PAGET’S DISEASE OF THE NIPPLE: is a rare form of cancer and found in less than 5% of breast cancers. 90-97% of cases of Paget’s also have underlying cancer in the breast. Paget's disease causes the skin on and around the nipple to become red, sore, and flaky, or scaly. At first, these symptoms tend to come and go. Over time, symptoms of Paget's disease usually worsen and may include:
- itching, tingling, and/or a burning sensation
- pain and sensitivity
- scaling and thickening of the skin
- flattening of the nipple
- yellowish or bloody discharge from the nipple
Because Paget's disease of the
nipple is rare, doctors often mistake it for eczema (severe skin rash and
inflammation), an infection or injury, or some other skin condition. For many
people, it can take several months to get a correct diagnosis. If you have any
of the above symptoms and they persist in spite of treatment, get them checked
out by a breast specialist. In most cases, Paget's disease affects one breast,
not both.
KATHY’S STORY: In August
2014 I first notice a scaly spot on my left nipple. I scratched at it with my
fingernail and when I took my bra off that night there were spots of blood on
my bra. From then on I watched the spot closely. It didn’t change. In September
2014 I had a mammogram which was completely negative. I continued watching the
spot and trying various creams on it. It would sort of come and go, but never
went completely away. I tried hydrocortisone cream but it didn’t help. I’d read
about Paget’s Disease some time in my nursing career and began researching it.
Something told me that’s what it was. In December I had an ear infection and
went to my primary care doctor. She is very proactive and I’ve heard through
the grapevine that she’s had breast cancer. I showed her the spot and she was
concerned. She had me make an appointment with the dermatologist. I was going
on a trip to Asia so I made an appointment to see the dermatologist right when
I got back. By that visit, the nipple was now changing. It was a bit larger,
red, and had a tiny crevice in the middle that had a bit of fluid in it. The
dermatologist thought I might have an infection so prescribed an antibiotic
ointment. After three weeks with no improvement I emailed her and said I
thought a biopsy was in order. She agreed. In early March 2015 I went in and
had a biopsy done. A week later I received a call from general surgery saying it
came back positive for Paget’s cells. An appointment was made with the surgeon.
Because the disease is so rare and there haven’t been many studies done, it
took a while to decide the best course of action. I had a special MRI done with
dye injected and didn’t get the results for over a week. The MRI was negative
for cancer inside the breast. The only spot that “lit up” was the nipple. At
first the surgeon thought the best course of action would be a mastectomy. I
didn’t want that because of the reconstruction surgeries I would need to do
afterwards, but was willing to do whatever it took to be cured. The day of
surgery, he came in and told me he’d been reading more literature and the most
recent studies showed breast conserving surgery was just as effective as
mastectomy, so that’s what I had done. No cancer was found anywhere else in the
breast or lymph nodes. Just the nipple. I will have radiation follow-up just to
make sure all the cells are gone. I’m fairly sure I’m cured of cancer.
Please share this with all your women and men friends. Men get this,
too. CHECK YOUR BREASTS THOUROUGHLY AND REGULARLY. BE PROACTIVE. INSIST ON CARE
WHEN YOU FEEL SOMETHING JUST ISN’T RIGHT. YOUR LIFE DEPENDS ON IT.
