My lump was found by a routine mammogram. I was resting on the couch after a lumpectomy when the phone rang. My husband answered it and gave me the bad news. It was malignant. I had convinced myself that this lump was nothing. It felt like this was like this was happening to someone else. Sometimes it still does! Of course I cried. We both cried. I had no idea what was going to happen. I suddenly realized that I was mortal. I had a disease that could kill me. My life was changed forever.

Our two married daughters knew about the lump and lumpectomy. When they heard the results they cried and hurried to be my side. We called my sister and brother with the bad news. We waited to tell my mother until my sister was with her.

My husband and I discussed our options with the surgeon. All we could think of was getting rid of cancer as quickly as possible. We did some fast research and decided to go with a modified radical mastectomy one week later. The cancer was invasive, infiltrating, and found in other parts of the breast. When the pathology report showed no cancer in any of the lymph nodes we rejoiced.

Next came the visit to the oncologist. He recommended chemotherapy followed by tamoxifen for five years. I decided to go with the biggest guns offered since the best time to totally annihilate the cancer is at the time of diagnosis. I took four rounds of Adriamycin and cytoxan, once every three weeks, for twelve weeks. Chemotherapy is not as bad as I thought it would be. Medications helped control the nausea. I avoided crowds, wore a facemask in public, and used hand sanitizer after touching doorknobs, phones, etc. I disinfected the house and even used a mouthwash for people with weakened immune systems. We asked friends from all over the country to pray for us and many of them put me on prayer chains.

My daughter and I went shopping for a wig and hats. I cut my hair to a quarter of an inch since I knew it would soon fall out. It hurts when it comes out! The American Cancer Society's Look Good, Feel Better program taught me to use makeup safely without contaminating it. This is important to cut the risk of infection since my immune system was compromised. I used new cosmetics, disposable applicators and sharpened the eye liner pencil after each use.

Before my diagnosis my family had scheduled a January trip to Disney World. My last chemo treatment was just before Christmas. What a wonderful way to celebrate the end of chemotherapy. I’ll never forget the high-fives we gave each other at the Swiss Family Tree House three weeks after my last chemotherapy treatment.

After the chemotherapy was over I was surprised to find a depression settling over me. From my support group friends I discovered this is very common. It lifted after I went back to work and kept busy and active.

After my surgery I was fitted with a prosthesis and mastectomy bras. I always felt a little sadness as I put it on each day. All the methods of reconstruction seemed too damaging. Then my sister saw Dr. Robert Allen on "The View" on television. He used the DIEP flap to transfer the tummy of one twin to her sister! The breast cancer survivor was an athlete with little body fat. Implants had failed, and she suffered through massive infections. The other sister had children and gained some weight, so she had a tummy to donate! (Since then his team of surgeons has done another twin transplant.) I researched the DIEP flap. I asked the plastic surgeon I had earlier consulted about it. He told me Allen was well respected in the plastic surgery community, he had met Allen, read his articles, and it was a good procedure. Dr. Robert Allen is chief of plastic surgery, a microsurgeon, and hand surgeon at Louisiana State University Health Sciences in New Orleans. He reasoned that the breast is mainly skin and fat, so it is not necessary to move muscle to reconstruct the breast with a woman's own tissue. He developed a method to transfer only skin, fat, and blood vessels. DIEP stands for deep inferior epigastric perforator, the blood vessel that comes through the abdominal muscle and feeds the tummy. He reconnects this vessel to the mammary artery in the chest. Fat from the upper buttocks or thighs can be used if there is a problem with the tummy area. As of this writing he has done more than 1000 DIEP flaps with a less than one half of one percent failure rate. DIEP patients use half the pain medications of TRAM patients and do not have the increased risk of hernia and back problems. You don’t have to worry about capsular contraction or leaking from implants. One third of their DIEP patients are replacing failed implants.

My health care finder told me Dr. Allen is a provider for my insurance. I could have the best! Immediately I contacted the office and scheduled my reconstruction. For delayed reconstruction he was booked six months in advance! Women who have mastectomies with immediate reconstruction can be seen sooner by one of the doctors in the practice. I used the waiting time to increase my exercise, lose some weight and get as healthy as possible. Pre-op instructions include avoiding cigarette smoke and stopping blood-thinning medications. Surgical soap is used twice a day for two days before surgery.

My pre-op appointments with the hospital, nurse, anesthesiologist, and Dr. Allen were on Wednesday, July 19, 2001. Allen made two different ellipses on my abdomen. Which one he would use depended on the blood vessels. He listened for veins and arteries with a doppler and said I had a number of good ones to choose from. The operation consent form said DIEP or SIEA breast reconstruction. SIEA is a surface artery procedure. In 40% of the patients the surface artery is good enough, so they don't have to cut through the muscle to get a deep one. We arrived at the hospital early Thursday morning. While we waited I spent the time briskly walking up and down the halls. I thought it would be a while before I felt like doing that again, and it might help to wake up my blood supply before surgery. It was a great stress reliever! By the time my name was called I was ready to rest and relax. Next thing I knew, as planned, I was in the surgical intensive care unit. My legs were wrapped in plastic devices that gently inflated and massaged them to keep the circulation going. The medication in the IV kept me fairly comfortable. I had a pillow under my knees and one under each arm. I sleep with my mastectomy side arm on a pillow because it is more comfortable and the arm tends to swell because of the lymph node removal. A pillow under the other arm made my IV more comfortable. A warm blanket was kept on my chest to aid healing. Shots of blood thinner protected against clotting. A doppler wire in the new breast monitored the blood flow and temperature strips made sure the flap was healthy. Friday morning I moved to my room. Dr. Allen came to see me each day except on Sunday, when Dr. Scott Sullivan, who assisted in my surgery, came. He thinks they set a new speed record of only 3 ½ hours for my surgery. Their surgical team is called The Flappers. All the hospital staff were wonderful.

During my hospitalization my husband stayed in the McFarland Center guestrooms in the hospital. After my release on Monday morning we moved to a motel. My husband had to help me get up out of bed. It was easier to get up in the hospital because you can raise the head and lower the feet of the hospital bed! We spent Tuesday and Wednesday like tourists: dining, shopping, and seeing some of the sites in New Orleans! Thursday was my appointment with Dr. Allen. The last drain was removed from my stomach incision. I could hardly believe how great I felt! He said I was doing wonderfully and could go home! We headed back to Florida only one week after surgery!

The following suggestions might help those who follow in my steps. Bring extra pillows for use in the motel room. I used two under my knees, one under each arm and one or two under my head. I took a fiber laxative, but still needed a stool softener and an enema in the hospital. The medications are very constipating. Take a warm soft throw to put across your chest at night. A soft, loose, comfortable dress was comfortable for touring New Orleans. The band on my stomach, a wide strip of elastic with a soft fabric strip on one side and Velcro on the other, felt good with a pair of stretch exercise shorts or girdle over it. In the car I sat on my foam bed pillow and tucked a small pillow between my stomach and the seat belt. I definitely felt the bumps in the road! Earplugs come in handy in the hospital. I am a light sleeper and kept waking up at every sound. After that first restless night in my room they gave me a sleeping pill, and I used the earplugs. I clipped the drain and the bulb on the end of it to a chain around my neck. Antibiotics were prescribed as a precaution. At first the new breast is rather high and swollen, but that is normal and aids in developing a natural droop. The incision had a 1/8 inch wide line of what looked like hardened blood with glue or sealer over it. As it healed that came off and the incision looked much smoother. The scar got worse over the next few months and then gradually began to soften and fade. The breast and the scars should continue to soften for about two years.

At home my local surgeon clipped some of the "absorbable" sutures. Most of the incisions had been closed with glue. We traveled 1600 miles to visit relatives. I returned to work four weeks after surgery. I had very little pain. The incision area is numb except on the ends of the stomach incision. I have no loss of muscle strength. I had stomach swelling for a few months due to the disruption of lymph flow.

My second stage, a nipple and a little contouring on the new breast, was done six months later. Dr. Allen also removed some of that extra tissue from my side that had been bugging me since my mastectomy two years before. I talked to nurse Clare while we waited for the operating room. She described how Dr. Allen first developed the DIEP. They studied the arteries and veins in women having cosmetic tummy tucks. Dye was used to see how the blood vessels fed the tummies that had been removed from these women. When they first did the DIEP only half of the patient's tummy was used. That gave them a second chance to use the other side of the tummy if the flap failed. If it succeeded they removed the rest of the tummy. This was done for a year, on the first 50 DIEP flaps.

I am trying to spread the news about this exciting but relatively unknown procedure. I have visited breast cancer support groups to share my experience. I visit many breast cancer message boards on the internet. When a woman asks about reconstruction I tell her about my experience with the DIEP flap and send links to sites with DIEP information. Sometimes we exchange e-mail and phone calls. Many women have called me their angel and thanked me for telling them about this. Women considering reconstruction need to know about this option. If we request it, doctors will learn it. Dr. Allen is recruiting and training skilled micro plastic surgeons around the world. It presently is being done in about 10 places in the USA and many countries in Europe and Asia.

Cancer makes you reevaluate your life and your goals. During my treatment I talked with a psychologist every few weeks. This helped me deal with the shock of living with a diagnosis of cancer. My life is different now. Family is more important. I take off work often, so we can travel and enjoy life. We made a list of things we want to do and places we want to go.

Love, hugs, and health,

Susan