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Zea's Story

I started noticing some strange symptoms in late November of 1996; an area of the skin of my right breast felt numb, and it looked red. I had also noticed that when I took my underwire bra off the indentation caused by the underwire took a longer time than usual to go away. I had already made an appointment for a general physical, which was coming up two weeks later, so I decided to wait until then to talk to the doctor about it. By the time I got to the appointment, the breast had swollen even more and was becoming very uncomfortable.

After completing the rest of the exam, my GP asked a surgeon to come in (I belong to an HMO, where there are lots of doctors wandering around). The surgeon examined me, and said that in addition to my other symptoms he thought my breast was too warm, and that I might have a breast infection. I remember thinking this was a little strange since I had thought that only nursing mothers got breast infections. (I was 42, and my kids were eleven and seven at that time.) The surgeon wrote me a prescription for antibiotics and ordered a mammogram.

When I came back to see him a couple of days later, he told me that the mammogram results were negative but the antibiotics didn't seem to be having any effect either. He said that he had to check for a rare form of breast cancer, said that I should stop taking the antibiotics, and did a needle biopsy and a skin biopsy right then. Because there was no palpable lump, he made his best guess about where to biopsy! That was on a Friday. By the following Monday, December 16, 1996, I knew I had inflammatory breast cancer.

I now know, after hearing other women's stories, that I am very lucky to have been diagnosed so quickly. It is one of the difficult aspects of IBC that many of us go undiagnosed for long periods of time, giving the cancer a running head start. This is especially so if we *are* nursing mothers, but true even if we are not.

But I didn't feel at all lucky at the time of my diagnosis. I went into psychological shock and stayed there. It was very hard at first. I finally started to come back to myself one day when I got a traffic ticket (the last straw, I guess) and sat in my car crying hysterically for an hour and a half afterwards. I needed that cry; I'd been crying on and off for weeks, mind you, but I needed to really cry-- hard and uncontrollably. After that it got better. I learned that I am tougher than I thought I was. It really is amazing what we humans can cope with when we have no other choice.

Over the course of my treatment I had (in this order) four doses of single agent adriamycin chemo, a double mastectomy with axillary node dissection on the affected side (I had 12 nodes positive), three doses of taxol chemo (I was scheduled for four doses but couldn't tolerate the increasing numbness in my hands and feet), high dose chemotherapy using the "Duke protocol," a stem cell rescue, weeks of radiation to the affected side, and I'm still taking tamoxifen four years later. I just recently chose to have a bilateral latissimus dorsi flap breast reconstruction, so I now have breasts (of a sort) again. They're cute :-)
Along with my conventional therapies, I also did Sioux sweats, Chinese medicine, visualization, lots of vitamins and herbs, and I asked everyone I knew, of every religion, to please pray for me. A good friend even arranged a healing ceremony and invited everyone I knew to come together and pray or visualize as a group. About fifty people came-- Buddhists, Catholics, Jews, Protestants, New Agers, followers of Native American spirituality-- and I have heard that it was an amazing healing experience for everyone involved.

When I was diagnosed what I most wanted to know was that there was hope for people with IBC. Now I can tell you with conviction that IBC can be survived. I am in great health, working full time, and watching my precious children grow up. My relationship didn't survive the cancer-- and that was devastating-- but with some distance I can see that I'm better off without her anyway. What has surprised me is how many fine, caring people came out of nowhere to help me and my kids, sometimes people I had barely known or not known at all before my diagnosis.

I sincerely hope you aren't reading this because you have IBC. If that is in fact what brings you here and you'd like to talk about it, I recommend you join the IBC list. I found the list very helpful when I was in treatment and for some time afterward. There is always someone on the list who understands your experience, and there are many people further along in the journey who can offer their hard won knowledge of treatment options, side effects and complementary medicine.

I hold a prayer in my heart for all people with cancer that they may be at least as lucky as I have been. May you be healed in your body and in your spirit...

Susan Grace

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