(My story as best as I can recall)
I was on a vacation in Florida the first week of December, 1997 with my new husband (married Aug, 1996). We went for a friend's wedding and touring the sights around Orlando. I was 51 years old and was post menopausal having had a hysterectomy in 1986. I had also been doing HRT since the hysterectomy. I noticed my breast suddenly became swollen and "hot". By the next day I could feel a lump in the upper outer quadrant of my right breast. I thought it was an infection or blocked duct and went to a local clinic for an antibiotic, which is exactly what they thought and prescribed. The swelling and soreness improved. When we returned to Albuquerque the following week and I completed taking the prescription, the swelling and soreness were better, but not gone. I went to my primary care physician who recommended I see a breast specialist right away. He later told me that he suspected IBC, but had only read about it, not ever seen it. The breast specialist tried a second antibiotic but it didn't work either, and by Christmas week the lymph gland under my arm was also swollen and sore. The specialist/surgeon did a core biopsy the day after Christmas. When I went to see her for the results, she told me "It's cancer and a bad one!" She's not much on the bedside manner, but a very strong advocate for her patients. I was devastated. My husband's first wife had died from breast cancer, and we were both in shock. My husband became my rock of support. He told me that he had seen one-breasted, bald women before and he would love me anyway I looked. By New Year's Eve, I was in the oncologist's office laying out a treatment plan. My Onc felt the treatment should be aggressive since the cancer was. Happy New Year! I have 3 grown children and the hardest part of this whole ordeal was making that phone call to them to say, "Hope your New Year is terrific and by the way I'm starting chemo for cancer tomorrow!"
I had a double Hickman catheter inserted and started my first round of CAF the first week of January, 1998. We learned to LOVE that catheter and I lived with it until July of 1998. We became experts at flushing it every morning and night. Initially, I could just tuck the two ends into my bra, but after the mastectomy, that didn't work. I developed a method of taping tabs on the tips and using a big safety pin I pinned them to a cotton knit loop I wore around my neck. Since I have always had difficult veins, I was grateful not to be stuck repeatedly. Today I sometimes wish I could have it back since it made the meds and blood draws so simple.
I had 4 rounds of chemo, 2 weeks apart. My blood counts stayed pretty consistent with the predictions for "crashing" and recovering. I never had to delay a chemo session. My hair fell out after the second chemo and I wore a wig or tied scarves on my head and continued to work part time. I was employed by a radiology group of 18 doctors. Sometimes my treatments were by a vote! The prescribed meds kept me from being nauseous, but I did have alternating constipation and diarrhea. I developed some type of infection around April 15 and was hospitalized with a fever for several days. My younger brother was a great help to me during this time explaining side effects since he went through chemo 2 years before for Non-Hodgkins Lymphoma. I had found the IBC website, but wasn't up to reading much of the information and never posted, just lurked.
In early May I had a MRM of the right breast. The surgery was not difficult. In fact I had it at 5:00 pm one night and went home the next day, stopping to eat lunch on the way! The breast surgeon was fanatical about exercises and regaining full use of my right arm. She threatened me with physical therapy if I couldn't raise my arm straight over my head so my bicep touched my ear! Some days were pretty uncomfortable to do this, especially when you could hear and feel the scar tissue tearing, but I did it and still have pretty much a full range of movement in my right arm. At this time, we discovered that I was allergic to the adhesive tape used to cover the incisions. When the tape was removed, the skin came with it. From this point forward, I brought my own paper tape to everything! In the middle of all this, we bought a new house and were lucky enough to belong to a wonderful church that moved us. I only had the drains in for about 10 days and wore large shirts without a bra. I was a 38-40 DD so the shirts were very large!
In June, I began high dose chemo in preparation for a stem cell transplant. This was the most difficult part of my treatment although I was only hospitalized for 16 days. This is the only time I experienced mouth sores and a very painful intestinal infection. During this time I had neupogen shots to activate the red blood cells. After the first 2 shots in the mornings at the Oncs office, and due to a recommendation by my brother, we asked for permission to give the shots ourselves at home. I had experienced severe bone pain and just general aching so bad that I was unable to function during the day. I was still trying to work whenever I felt up to it and my blood counts were good enough not to risk any infection. So my husband gave me the injections at night and I took a Tylenol and went to bed, sleeping through most of the side effects. This is what I recommend to anyone that has to take those nasty Neupogen shots. The actual "shot" part in the stomach was fairly simple and painless. As soon as my blood count was sufficient, I had tubes implanted in my neck to prepare for the reinfusion of stem cells which had been harvested a week or so earlier. Many of my friends and coworkers donated blood platelets for me. I suffered chronic yeast infections during this time and endured severe vaginal sores which made it impossible to walk, sit or lie on my side. When I was released from the hospital I went directly to my gynecologist and asked that he see me. Who could turn down a sobbing, bald woman with tubes coming out of her neck! He recognized right away how to treat my condition. I just wished the Onc had recommended something weeks before. He told me he had never seen a reaction like that. I guess some things were just out of his field of expertise because in every other way, he was wonderful. I began taking Tamoxifen sometime during the summer.
In August I began 4 weeks of radiation, front and back and into the clavicle area. I tolerated this fairly well and only toward the end had severe burning. One thing I did have that surprised everyone was a series of very tiny blisters around the area of the rads. Not in the field just on the fringe. We finally determined that I was having an allergic reaction to the India ink they used to mark the radiation field. Sleeping was tricky since both the front and back were burned. I slept on my side propped with pillows. I used straight aloe gel on the radiated area. Since my office was across the street, I was able to work this whole time, going in about 9:00 am and leaving at 3:00 pm for my rads. Then I went home, took a nap, fixed dinner and went to bed.
Labor Day weekend of 1998 we celebrated the end of my cancer treatments. I continued the Tamoxifen. There have been many nights of leg cramps, heel spurs that lasted a couple of years, chemo induced arthralgia and a time when my blood counts went haywire. Cholesterol went to almost 500, liver enzymes were extremely high and tumor markers elevated. After much head scratching, cholesterol meds which wouldn't affect the liver, a liver biopsy, and changing to Femara, etc. we finally tested the thyroid. I now take a supplement daily. Tumor markers, liver enzymes and cholesterol are all back in the normal range. I am definitely 25-30 lbs heavier than I want to be, but don't have the energy to exercise or diet on a regular basis. I find that my old body just won't heal the way it used to. Chronic joint and muscle aches and pains, but I won't let it stop me from doing what I want to do. I still work full time and we travel. My children are producing grandbabies (3 and 1 on the way). 6 YEARS AND STILL COUNTING…….
Unfortunately, my kid brother is not so lucky. He has recurred 4 times and is now (Aug 2003) searching for a new medicine or protocol or clinical trial that will arrest his cancer. He is only 54 and has a ten year old son………….Pray for all of us….