Died April 16, 1997. This is her story written by her husband, Peter.)
Sheila (46 Years) was a person who lived life to the fullest. She had tremendous compassion for others and did not want others to be overly concerned for her own well being. She was very active in the community and a constant volunteer at the local elementary schools. She organized and ran the school lunch programs for more than 7 years, organized school emergency response systems and was treasurer of the school advisory committees. She finally decided to take time for herself and went back to school to upgrade her skills. She joined the work force in September of 1996 in a job that was extremely interesting and offered her a real challenge.
Sheila first suspected she had a problem in late June 1996 when she discovered a very small lump in her right breast. She went to see our family doctor who scheduled the requisite mammogram. The results of this were interpreted as cyst and she was placed on a series of antibiotics. By early August it still had not cleared up so a different regime of antibiotics was given and she was scheduled for an ultrasound. She was again given the assurance that it was still a cyst. It was after this that she informed me of her fear. The cyst continued to grow and she went back to her family doctor who send her to see a breast specialist. The specialist scheduled her for some day surgery to remove the cyst. When they tried to remove fluid (typical with cysts) they did not get any. She was then scheduled for a biopsy and was eventually diagnosed at the end of October 1996 with Inflammatory Breast Cancer. This of course was a huge shock for both of us. We chose not to inform our kids of all the details until we could learn more about her prognosis but did tell them about the cancer.
Sheila then spent time undergoing staging and was accepted for a clinical trial (which had shown good results during phase 3). The trial protocol required a number of cycles of FAC to reduce the tumor, radiation, MRM and then more chemo. She actually began FAC chemo on December 6. She did not suffer from to many side effects only very mild nausea which the Zofran sorted out very quickly. Although we knew it would happen, it was still a shock when all of her hair fell out on Christmas Day. Our boys thought it was a hoot and wanted to start applying car wax. After 3 or 4 cycles (cant remember how many) produced good results (shrinkage), she started 5x5 radiation and had surgery scheduled.
One week after the radiation began she noticed some small nodules on her skin in between her breasts. A needle biopsy revealed these as positive and also further lumps in her other breast. Because it had started to spread very quickly her Oncologist took her off the radiation and put her back on FAC chemo to gain control. She was also informed that she was no longer eligible for the clinical trial but was told that she was now eligible for an HDC/PBSC clinical trial at the Ottawa Regional Cancer Center (Canada). By the next cycle of FAC chemo it had completely taken over her other breast, with many nodes in under her arm and around the neck. Sheila then began experiencing some pain around the breast, under her arm and in her back. She was put on various strengths of morphine to deal with this. After this cycle of chemo it was obvious that the cancer had become resistant to FAC. Her right breast by this time is very large and hard (she felt that it was climbing up her body to meet her). We decided to try Taxotere and began this on April 8. Her Oncologist said that if this chemo shows some positive shrinkage signs (breast and skin) she will undergo immediate HDC/PBSC transplant. She continued to take morphine and statex, etc. for pain and also continued to work.
Sheila came home from work early on the April 11 with a sickening feeling in her stomach. For most of Saturday, she was experiencing pains all over and eventually excruciating pains all around her abdomen. We had already called the resident "on-call" Onc who suggested that we increase her current dose of morphine that she was getting. Also we should call the home help nurse that we have if the increase didn't help. Well it didn't help so we called and she gave her an infusion of morphine which was also no help. We finally called 911 and on the evening of April 12 Sheila was taken by ambulance to the hospital. She went into emergency surgery at 1am and came out at 4am. Prior to the surgery they also discovered that her white blood cell count had crashed to 0.02. She was diagnosed with a perforated colon and bowel and the crud inside had seeped into her stomach and elsewhere. They performed a bowel resection and removed part of the colon (which was sent for a pathology report). She had also developed septic infections (because of the seepage). On Sunday Sheila was moved to the Intensive Care Unit (ICU) on a respirator with many IVs of morphine, fluids and dopamine try to keep her blood pressure up. She was drifting in and out off consciousness. The ICU also began infusing her with massive amounts of antibiotics to combat the infection that was beginning to set in. On Monday the surgeons began infusing GCSF (Nupogen) to boost her white cell count which would allow her to begin fighting the infection. Although the GCSF managed to bring up her WBC to 5.3 it was to little to late. Her temperature continued to climb and the infection basically overwhelmed her system and her kidneys and liver began to fail. She was also bleeding continuously from the nose and mouth (and possibly internally) as her platelets continued to drop despite continuous infusion. The ICU staff continued to infuse her with dopamine to keep her BP up but she was unable to sustain this on her own. Eventually her internal organs failed and she was only surviving with the machines and drugs. We decided on Wednesday at 8.30pm to begin withdrawing the drugs and life support and her systems shut down at 8.40pm. It was a tough decision but she would not have wanted to continue the way she was. The ICU kept her on heavy morphine and sedation so that she died peacefully and without pain.
Over the past 5 months her Oncologist, this IBC list (www.bestiary.com) and in the final 4 days the staff at the ICU, were a tremendous support throughout this ordeal and should be commended for their dedication. According to her Oncologist and the surgeons involved in the Op Saturday night/Sunday morning Sheila was the victim of a combination of bad circumstances coming together at one time. The combination of all the drugs and chemo that she has taken over the last 5 months served to weaken her bowel lining and colon which eventually ruptured. This and the fact that her WBC crashed to 0.02 meant she had nothing in her body with which to fight the onslaught of infection.
Sheila was a real fighter who did not want to give in too IBC. She continued to work until she was hospitalized 5 days before she died. I think the main lesson to be learned from this are two fold:
1. I believe that the education of General Practitioners in recognizing all IBC symptoms is critical. Early diagnosis, which we as victims and care givers all know is important, must be instilled in all people if there is to be any chance at long term survival. Insistence on follow-up tests to determine the true diagnosis is our responsibility as well as the medical community.
2. All chemo drugs and heavy pain killers can have a devastating effect on our internal systems. We should be more aware of this and insist on continual check-ups of major organs. Although these can be costly, life costs more.
My boys and I are now beginning a new chapter in our lives and offer our best wishes and hope for the future to all IBC victims and their care givers.