The Red Lace Bra (or … The Infamous Red Bra)
by Sandra Savin

My story begins on February 6, 2001 in a lingerie fitting room. At age 60, I was looking for my first-ever red lace bra to wear on Valentine’s Day, which is also my husband’s birthday. As I took off the bra I had tried on and glanced in the mirror, I noted bright redness all around the nipple of my left breast. I was sure it wasn’t there when I had showered in the morning. “The redness must have rubbed off the bra,” was my first thought. Closer examination led to the conclusion that the redness was coming from within my breast.

I had no other symptoms of what I now know to be IBC — no swelling, no warmth, no peau d’orange. Just the very puzzling redness. Ten days later I got in to see the doctor. By now the redness had faded to pink, but it was still clearly evident. The doctor mentioned that this type of redness was typical of mastitis in nursing mothers, but that mastitis was unlikely. He also mentioned that mastitis is treated with antibiotics, in which case the redness goes away. I told him I was already on antibiotics for a severe sinus infection. His exam showed no lumps and no masses — the “typical” red lights for breast cancer. He did note swollen lymph nodes in my arm pit and immediately called a breast surgeon and made an appointment for me.

The mammogram appeared “normal”, except for showing the swollen lymph nodes. Only after the mammogram was compared with my previous one, did we see a new thickening of the breast tissue. So the mammogram was followed by an ultrasound-guided “punch” biopsy of breast tissue and skin in the area that appeared to be most affected. The pathology report came back with no evidence of malignancy. I rejoiced at my good fortune! By now I had researched enough to know that my doctors had been looking for evidence of inflammatory breast cancer, and it was something I surely did not want to have!

However, my surgeon was not satisfied with the pathology report and vowed to determine the cause of the redness (now almost completely gone) and the swollen lymph nodes (one by now the size of a walnut). She did another ultrasound-guided “punch” biopsy in a different location in the breast, and this one yielded the frightening news that it was, after all, IBC. She told me the plan of treatment would involve chemo, an MRM, more chemo, and radiation.

My doctors were amazingly conscientious and clearly had an idea of what they were going after. My doctor’s mother-in-law had recently been diagnosed with Stage IV breast cancer, and in his research into her condition, he learned of IBC. He passed on his suspicion to the surgeon, who was already familiar with IBC as well. I consider this especially fortunate because no time was wasted on “Well, let’s just wait and see …”

My oncologist had also treated IBC previously, but his patient had all the classic symptoms, which I was lacking. Not convinced I actually had IBC, he recommended only chemo (ACT) and surgery afterwards — more typical of the more common treatment for breast cancer. He felt radiation would not be necessary, since there were no lumps or masses. This concerned me, especially after all the research I had done.

So I went to M.D. Anderson in Houston for a second opinion, a full diagnostic work-up, and a treatment plan. Anderson confirmed the IBC diagnosis, confirmed it had not metastasized beyond the lymph nodes, and set up a treatment plan typical for Stage III IBC — chemo (AT), followed by the MRM, followed by more chemo, followed by 6 weeks of radiation, twice a day.

This Tuesday, I will get my fourth round of chemo. My side effects have not been severe — fatigue (a lot), leg pains (mainly at night), nausea (controlled by meds), a rash on my shoulders and back, and slight neuropathy in my hands and feet. When I read of others’ problems, I consider mine to be mere annoyances. They’re definitely tolerable, especially if they lead to a good outcome.

I’ve saved the really good news for last. I had a check-up in Houston this week, and I’m progressing wonderfully. The swelling of the lymph nodes is completely gone, as is the internal inflammation of the breast tissue. The oncologist at Anderson called me the “Poster Child” for AT with ibc. My surgery is scheduled for August 15, I may have to do only 2 rounds of AT following surgery prior to radiation. I will be on Tamoxifen afterwards.

My general health has always been great, and my family members live to be in their 90s….so I have been shocked and scared to death, wondering — how can this be happening to me?! I’m not ready to die, and I want to fight this IBC every way I can. My dad died of cancer in November 2000, and at the time I mentioned to some family members that I felt I’d be ready to die if I had cancer. NOT!!!!! I have come to feel there’s still much for me to do in this life. I’m hopeful that I’ll beat this thing, and I am very much encouraged by the results of my treatment so far.

I’ve been very grateful for the medical care I’ve received — good doctors who took every symptom seriously. I have had the good fortune to have the right medical team, the power and convenience of the internet, many caring friends, an incredibly supportive employer, and a loving and supportive husband and son.

About the red bra … I did wear it once, and it now hangs prominently on a peg in my closet, and every day I look at it and say a prayer of thanks that it is there … and that I am here.

Sandy Savin
story submitted July 2001

August 13, 2002, Sandy wrote a follow-up message:

I, too, want to let folks know that there can be life after IBC. Different, perhaps, than before, but nonetheless something to be very grateful for. I was just sharing with someone else how far I’ve come, even over the last 4 months (I completed treatment in December).

A trip I took last month really shows me how differently I feel now from just a few months ago. A close friend and her husband who live in Memphis rented a flat in Richmond, outside London, for July and August. She is an antiques dealer and combines her buying trips with some sightseeing and fun. Her husband had to return to the states for business the last week in July, and she was bemoaning having to be in the flat by herself while he was gone. Well, I had a ready solution for that! It was my first trip to England, and I loved it. We had lots of “girlie” time (I’m an only child so I never had the experience of sitting up all night talking to my sister) and got to do some sightseeing too.

What was especially significant for me was that the first weekend in March I flew up to Memphis to visit her and another friend who was coming in from California. I was terrified of my ability to take that simple trip (a flight of one hour) alone. Although I had been very confident and had traveled almost weekly in my job prior to IBC, the IBC experience totally drained my self-confidence. I was terribly self-conscious about my prosthesis and could only wear it (then and now) for a short period of time because of chest wall pain caused by nerve damage from surgery, the subsequent chemo, and the radiation. My hair was still not completely in — I looked like a duckling and felt far from fashionable. Well, in spite of my fears and insecurities, I did fine on the March trip and have been in a great women’s psychotherapy group (not cancer-related) since then. I’ve made such progress that in July, I never gave a thought to whether I could handle flying to Europe alone. Yes, I had to take things easy and couldn’t do as much sightseeing as I would have liked. But I did it without fear, and that’s the significant thing. Progress toward regaining my sense of self might have been slow, but the trip to England was really a landmark event that showed how far I had come.

I know that many of you currently in treatment are feeling a loss of “self”. Trust me that with help you can regain much of what you feel you have lost. This awful disease doesn’t have to rob you of the things that are important to you. You may have to take things more slowly than you would like, but you can create a life that is joyful in spite of your limitations. I celebrate each day for the family and friends I have who add so much to my life. IBC has not changed our relationship except to make it stronger. Yes, some “friends” disappeared when I was diagnosed, but I’ve come to realize they were not really friends. Look for the people who want to support you and for even small events (like a lunch together) that make you happy. And we all know the support and love we get daily from all the wonderful people on this list.

One day you may hopefully find that IBC is no longer the center of your universe. Yes, it’s still a significant part of your life, but at least it is possible that it could move from being a 24/7 thing. That’s something I really needed to hear while I was in treatment.

For all of you, I wish hope. Know I think of you daily and pray for peace in your life.

Sandy
Updated 2002