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 alarming 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, no pain. Just the very puzzling redness. Ten days later I got in to see my primary care physician. 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 an infection in nursing mothers called mastitis, but that mastitis was unlikely in a woman my age. He also mentioned that mastitis is typically treated with antibiotics, in which case the infection -- and redness -- generally disappears. I told him that I was already on antibiotics for a severe sinus infection, confirming that we likely were not dealing with mastitis.
His exam showed no lumps and no masses -- the "typical" red lights for breast cancer. I was so relieved -- I didn't yet know that you don't have to have a lump to have breast cancer. However, he did note swollen lymph nodes in my arm pit and immediately called a breast surgeon and made an appointment for me.
The surgeon first ordered a mammogram, which 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 performed a stereotactic 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..."
I was next referred to an oncologist had also treated ibc previously, but his previous patients 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.
I started chemo in early May 2001. This seems like a long time from my first symptom, but it took this long to get through the various appointments and tests and for me to be thoroughly comfortable that I was in the right hands with the right treatment plan. My side effects were not severe -- fatigue (a lot), leg pains (mainly at night), nausea (controlled by meds), a rash on my shoulders and back, and neuropathy in my hands and feet. When I read of others' problems, I consider mine to have been mere annoyances. They were definitely tolerable, especially with the outcome the chemo led to!
By the end of the third treatment, the swelling of the lymph nodes was completely gone, as was the internal inflammation of the breast tissue. The oncologist at Anderson called me the "Poster Child" for AT with ibc.
My surgery was August 15,2001. There was no evidence of disease in any of the breast tissue or in any of the 20 lymph nodes removed! I had only 2 more rounds of AT following surgery prior to radiation. I had radiation twice a day (a common protocol for ibc patients at M.D. Anderson) for a total of 44 treatments. For me, the radiation was the worst part. I'm very fair-skinned, and I burned pretty badly.
I have peripheral neuropathy, and I've been treated for chronic pain that has resulted from nerve damage from my MRM and the very aggressive radiation treatment, but generally speaking, life is good. I had a free TRAM flap reconstruction on January 29, 2003, and a revision in June.
Prior to my ibc diagnosis, my general health had always been great, and my family members live to be in their 90s....so I was 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'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. As I write this, it's 2 years and 5 months from diagnosis, and I remain NED.
I 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 know that many of you beginning or currently in treatment are feeling fear, insecurity, and a loss of "self". I've been there, and I wondered if I would ever feel "right" again. 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. I had my regularly-scheduled 3-month check-up with my oncologist last week, and it occurred to me that at last I go to these check ups NOT expecting him to find something awful. That's goodness.
For all of you, I wish hope. Know I think of you daily and pray for peace in your life - Sandy