This story will be ongoing as it isn't over yet. I am still diagnosed as NED, which means "No Evidence of Disease" -- or as I like to say "No Expiry Date"!

Me waving my wig at you!


My IBC journey
I knew about IBC (Inflammatory Breast Cancer) before my diagnosis. When I woke up one morning with a red swollen breast I had a "gut" feeling that I was in trouble. I was 52 at the time. I told my GP I had cancer, he said "No Heather, you have mastitis," which is just an inflammation of the breast.

He ordered antibiotics, which of course did not work. When I asked how a 52 year old woman gets mastitis he said "A cat scratch or a bug bite." I cheerfully accepted his diagnosis because I have cats and they do climb all over me. Since I had never had a mammogram or an ultrasound, he ordered one just to be safe.

Insistence pays off
I had to wait five weeks to have the mammogram because mastitis is not considered an emergency. When I finally went in for it, the technician told me that they would decide whether or not I needed the ultrasound based on the results of the mammogram. If I needed it, it would be done at some point in the future.

I dug in my heels then and said "I will not leave this mammogram room until you get the radiologist in here and he or she looks at me and puts it in writing that I do not need an ultrasound".

That did it. A radiologist came, saw me, and did an ultrasound immediately. He knew something was wrong by the difference in density of my breasts, but didn't know what it was. He recommended I see a surgeon.

A surgeon's opinion
I waited eleven days to see one. By that time, I had enlarged lymph nodes. The surgeon was an angel. She immediately knew what it was and did a needle biopsy. She told me to go have a cup of coffee and when I came back, she would have an answer.

That was Tuesday, June 20th, 2000 -- at 11:00 am. I will never forget her words when I came back. She said "A few years ago, I would have told you to go home and write your will. Now there is hope." I saw the oncologist on Wednesday and started chemo on Thursday. There was no question of delay -- the oncologist wouldn't let me.

Five years later
I had six rounds of FAC, three weeks apart. (Fluorouracil, Adriamycin, Cytocin), a modified radical mastectomy and 25 rads. I've been on Tamoxifen for the last five years and am switching over to Femara. I do have souvenirs of my treatment -- quite severe lymphedema and pesky nerve endings aka "chest pains" but they are a small price for being alive.

For those just starting the IBC journey -- grab onto that hope and hang on tightly! It is possible to control if not beat this cancer

See also

• Shared stories
• Sharing experiences
• Giving back
• Being a cancer survivor