Nancy: Déjà Vu

My sister, and my best friend, died in 2002 at the age of 54 after a difficult seven-year fight with breast cancer. I was my sister’s support system during her journey and I thought I knew everything about breast cancer. Later, I learned I didn’t. Little did I know that chemo would leave me permanently bald.

My sister’s battle included high-dose chemotherapy and a stem cell transplant. Unlike me, she did not receive the chemotherapy drug, Taxotere, and her hair grew back after treatment. When she found a lump on her breast, her gynecologist, who had delivered both of her girls, said it was probably an infection and to watch it for a month or two to see if it disappeared. Her last mammogram was six months prior. Then she felt a lump under her arm. The rest is history—she was Stage III ER/PR+, Her2/Neu negative at diagnosis. Her recurrence happened at five years from diagnosis. She died an ugly, painful death. Her young daughters and I may have lost her, but she lost everything.

So when I was diagnosed at the age of 58 in 2004, I told my oncologist that I had already died of breast cancer two years before. I obviously was afraid of breast cancer and checked myself daily, but I never felt a lump. My sister and I are both educated women who took care of our health (ate right, exercised, stayed thin and had our mammograms/checkups every year). But all these things didn’t make a difference for us.

I didn’t feel well for a year before I was diagnosed. I had gone to the doctor repeatedly to find out what was wrong. My left breast really hurt, but I was told, “breast cancer doesn’t hurt.” I had my annual mammogram and breast exam just ten months prior to diagnosis. I developed a cold sore, for the first time in my life, about eight months prior to diagnosis. It just wouldn’t go away and spread into the roof of my mouth. I was treated with several rounds of anti-viral drugs.

I also had a basil cell lesion along the bra line of the breast with cancer that had to be excised. I even had a breast exam two months prior to diagnosis, but my internist didn’t find anything or send me on for further examinations. So you might guess that I am angry and also a little suspicious of everything touted regarding early detection and proactive awareness.  It didn’t help my sister and it didn’t make a difference for me.  One thing that certainly needs to change in medical school is for physicians to be taught that breast cancer is not one disease and that the symptoms vary.

The final trigger was when I woke up one morning and noticed that my left nipple was inverted. That’s when I was convinced I had breast cancer. Yet even with that symptom, they were still going to wait two weeks to do a needle biopsy since the ultrasound could only detect something very small. I called my prior gynecologist and she got the ball rolling. I had a biopsy, followed by a lumpectomy and a mastectomy. I was diagnosed Stage 3C, with 11 of 11 nodes positive, ER-/PR-. HER-2/Neu positive. I was told very bluntly that I had a lot of disease with a poor prognosis. I received dose-dense chemotherapy, including four rounds of Taxotere/Herceptin and 35 rounds of radiation.

When the breast cancer spread to my neck nodes, Tykerb was added to my protocol. Again, it took over six months to second diagnosis. My only symptom was the loss of my voice due to a paralyzed vocal cord. Eventually something was detected on PET. When my hair didn’t return after treatment, a number of oncologists and dermatologists told me that they hadn’t seen this happen before. I couldn’t find anything about it on the Internet. My physicians certainly didn’t seem to care or were very empathic. None of them said that Taxotere was the likely culprit.

I know better now. My current breast cancer oncologist immediately said to me on my first visit in 2008, “Permanent hair loss sometimes happens to women who take Taxotere”.  Needless to say, I felt alone, angry and very depressed when this first happened to me. Bald men are considered sexy these days, but bald women are regarded as freaks.

I love sports and the outdoors, so not having hair really presented a huge problem. I searched and searched for an acceptable solution… and it took me over three years to find one. Unfortunately, the solution is very expensive.

I believe the drug manufacturer should compensate me and others affected by this serious side effect. I was never told this could possibly happen. Compensation is not going to give us back our own hair, but at least we can have the next best thing:  to make Sanofi-Aventis, the manufacturer of Taxotere, do the honorable thing for all of us. At this stage of my journey, I want to be a “poster child” for a breast cancer vaccine research project. I think we should be spending most of our breast cancer research money in this country on finding a cure, rather than on finding new treatments to merely prolong life. A cure is what I want for the next generation of women so they never have to experience this nightmare.

Our goal is to raise awareness of the drug company’s non-disclosure among oncologists and their patients. We want to make sure that no more women are left uninformed about this side effect.

4 thoughts on “Nancy: Déjà Vu

  1. Nancy,
    I am so glad I read your story. My case is exactly like your sister’s, Stage III, ER+ Her2neu- 9 of 25 limphnodes with cancer and luckily I have had not had any recurrence until now. I was diagnosed on Sept 2007. Bilateral Mastectomies on Oct 2007, the same month I turned 50. Then chemo TAC (Taxotere…A…C) and radiation 33 sessions. I had no idea of the rare side-effect of staying permanently bald until I found this website. Doctors did not tell me that side-effect. They also failed to tell me that Chemo treatment would make me gain 25 pounds that I have not been able to lose in any way… If I had known… That is sad, because if they tell us in advance at least we are warned.. Same with the Plastic Surgeon who said that the reconstruction was so easy and it would take only like a couple of months. I have been struggling with that for 3 almost years, since the mastectomies. I have a new Plastic Surgeon, let’s see what happens.
    I think doctors prefer not to say side effects because they think we might get scared and that not knowing is better.
    I have researched so much and learned so much but look with the Taxotere, I had no idea. My hair returned but very thin and the forehead line is not so full. I had no hair on the sides of my forehead for about 2 years and there I only have some very-tiny-extremely-thin hairs. Now, after knowing, I think I will never get hair back in those two sides.
    I was devastated when I knew I was going to lose all my hair. I had long straight hair and never have had short hair since I can remember. I was sure it was going to grow again and it did but it could have not and I was not aware of that.
    It is very unfair that oncologists don’t warn you about those so called “rare” side effects… you could be in that small percentage, like happened to you.
    I really understand the frustration you are having with this unfair, not warned side effect and my heart goes to you. I am not going to say like many… “at least you are alive… and with no cancer…”
    I admire you, for sharing your story and warning other breast cancer patients. I am just going to build my website and it is going to be dedicated to share my whole experience and what I have learned with other women like us.
    Big hug and I admire you.
    Beatrice

  2. Thank you for posting your comment. I appreciate your well wishes.

    Good for you—if sharing your experience only helps one woman it is worth it. I admire you too.

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