Kimís Story (Dx January 15, 2003)
(as told by her husband)
In order to tell my wifeís story about having IBC, I need to go back a few years.
In May of 2000, my wife, Kim, was dx with Stage 2C ovarian cancer. She had a hysterectomy and six cycles of chemotherapy. In June of 2001 she was pronounced cancer free. Almost two years later, we would hear a different pronouncement.
In early December of 2002, a routine CA-125 blood test (CA 125 is a protein in the blood which is elevated in the presence of ovarian cancer cells) to check whether the ovarian cancer had reoccurred indicated a significant increase. Normal CA-125 should be less than 40. In December in June of 2001 it was 4. Now it measured 101. We were devastated as we thought the ovarian cancer had come back. The oncologist said that a high CA-125 by itself didnít necessary mean the ovarian cancer had come back. He said Kim needed to have a CT scan of her abdomen and pelvis. The CT scan came back negative for any visible reoccurrences. The oncologist said that an elevated CA-125 could be the result of an infection or possible a new cancer somewhere else. He sent her to have a PET scan, which also was negative. The oncologist said it could be a sign of microscopic cancer and to come back in January 2003 to repeat all the tests again. He said there was nothing to worry about yet since the CT and PET scans didnít show anything.
Meanwhile, in late December 2002, Kim felt a lump in her breast. She went to her gynecologist and he sent her to a breast surgeon. The surgeon ordered a mammogram, which was negative, and a CT scan of the breast. The CT scan showed the lump. The surgeon said it was a benign cyst, not a tumor, and aspirated it. The fluid was clear, a good sign according to the surgeon. The surgeon told my wife to come back in a month.
In early January 2003, my wife noticed another lump. But this time, the breast itched, was red and swollen, and dimpled like the skin of an orange (classic signs of IBC). Kim called the surgeon and was told she probably had a breast infection. The surgeon called in a prescription for an antibiotic and told her to make an appointment for the following week. A day later, Kim developed a 101 temperature. I called the surgeon and she said Kim probably had another cyst that had abscessed. The surgeon said to go to the emergency room. The surgeon arrived at the hospital and said she would operate to clear out the infection from the abscess. When the surgeon came out after the operation, she told me that she was worried because there was little infection in the abscess, mostly blood and dead tissue. She said she took several biopsy samples that pathology would look at. We would know the results in a few days.
Two days later on January 15, 2003, we were told she had inflammatory breast cancer. This hit us like a brick wall. All along we thought her ovarian cancer had come back, but the increase in the CA-125 was because she had breast cancer, not because of a reoccurrence of ovarian cancer.
Two weeks later she began chemotherapy. Kim was put on an AT regiment consisting of Adriamycin and Taxotere for 6 cycles, one cycle every 21 days. After the second cycle, it was evident that the AT regiment was not working when she developed another tumor. Kim was then put on a Gemzar and Carboplatin regiment for 6 cycles, one cycle every 14 days. After the second cycle, Kim developed a reaction to the Carboplatin. For the next cycle, Cisplatin was substituted for the Carboplatin. Kim was also put on an oral form of chemotherapy called Xeloda.
Throughout the chemotherapy, the only side affects Kim had were extreme fatigue, and, of course, hair loss. She never got nausea. To help with the fatigue, she had Procrit shots twice a week to help increase the production of red blood cells. She also had a shot every 14 days to help increase white blood cell production (but I canít remember the name). The chemotherapy also did a number on her blood chemistry so she took massive does of iron, magnesium, potassium and vitamins C and B complex. She had one platelet transfusion and two blood transfusions.
On August 4, 2003 Kim had a single modified radical mastectomy and lymph node dissection. Three of the 15 nodes were positive for cancer. She had no complications from the surgery and did not develop lymphedema. On September 10, 2003 she started the first of 28 radiation sessions. The last radiation session will be on October 20, 2003. After that, she has to get staging studies done again, i.e., CT scans, bone scan, and a PET scan, to see if there is any residual cancer present. Kim will get a monthís rest and then she will have to go back on chemotherapy again in December, 2003 for four cycles since the cancer was still in her lymph nodes.
After almost 10 months of treatment, we can now just barely see the light at the end of the tunnel. We are looking forward to the day when she is told she is ďNEDĒ Ė no evidence of disease!
-Kimís loving husband, Michael