Breast Forms, Mastectomy - Lumpectomy Forms, Enhancers, Pocketed Bras, & Accessories

On November 18, 2003, I completed six weeks of radiation therapy following a lumpectomy for DCIS (see Breast Cancer Becomes a Personal Issue). Just six months later, on Sunday, May 23, 2004, I discovered a lump in the right breast. Because my follow up mammograms had been clear, it was quite a shock to actually find a lump. By 8:30 a.m. Monday morning, I was back at my radiation oncologist. He was concerned by the size, but also commented that we had discovered it early.

That same afternoon I had a mammogram and ultra sound. Three days later I had a biopsy. After a week of waiting for the results, we got our answer – invasive breast cancer. I simply cannot convey the devastation both my husband and I felt. I was so frightened. I thought, “I’m going to die.”

The end of that week, I had my first meeting with a medical oncologist and realized I was going to be facing possible mastectomy and certainly chemotherapy. I was about to discover the joys of dealing with poison in my body!

With guidance from my surgeon and medical oncologist, I opted to try chemotherapy to shrink the tumor first, which would perhaps give me the option for a lumpectomy versus a mastectomy when we did surgery. First we needed to test my heart. I began to research and would discover a great many medical procedures and terms I wish I didn’t have to know. A MUGA scan was scheduled and I passed with flying colors. The next stop: chemotherapy.

We started with “patient education.” First I will say that the shock and fear had not worn off; it was just 2 weeks prior that I had found the lump. To say my husband and I were less than impressed with this process is quite an understatement. The room was uncomfortable; there was no table to lay the huge book on that the nurse was reading from, and all her materials kept falling out of the book and on to the floor. I had to sign off that I was aware of every possible negative thing in the world happening to me, including death. What an upbeat thing to do before I walked back to get plugged in to chemo! At one point I had enough and said I wasn’t going to do chemo. My husband remained very calm (bless his heart – I don’t know where he dug up the strength but I could not have done this alone) and got me through it. The next stop was just a few feet away: the chemo recliners where I was plugged in to my first round of drugs: Adromyacin and Cytoxin.

Now unless you’ve gone through this, you might not be able to relate, but everything was going through my mind: I figured I’d get every side effect they had talked about; I was still convinced I wouldn’t live through it. And of course a major concern was the white blood count. I thought, “I CANNOT get sick.” If I have 100.5 temp it would mean an immediate trip to the emergency room.

We are lucky to know some wonderful nurses, and our nurse friend Julie stopped in that first day of chemotherapy. It was exactly what we both needed at the moment. She was very practical and upbeat at the same time. We also noted that the chemo nurses went from doing their job to taking more interest in me as a patient. They found a peer of theirs that knew us and it changed their attitude. (Note: to this day I still stop in and visit my chemo nurses. They truly helped me survive and I will never forget their encouragement and care.)

As we completed that first chemotherapy session and were leaving the Cancer Center, another nurse friend, Mary, came up to us. She had come for a chest x-ray on her 10-year breast cancer anniversary, which was that very week. She sat in the lobby with us and told us all the positives. It was wonderful to have that survivor discussion.

The reality of chemotherapy hit me pretty fast. Just six days later I had tremendous pain that went around my body (just under the breast area). I ended up in the emergency room, but after all sorts of tests including chest x-rays and breast MRI, nothing was diagnosed. Two weeks to the day after that first chemo, my hair was falling out at such a rapid rate, my husband “buzzed” it off. Being bald is a story itself!

I had the second round of chemo three weeks after the first. I started to get sick; coughing, shortness of breath. They started testing me by scanning the lungs, taking blood work; I even had a brain MRI. The day my third chemo was scheduled, we postponed for 3 days due to concern on the lung capacity. I was extremely ill by this time, and later my husband said this is when he thought I would die; I couldn’t breath. Ultimately, I ended up at a pulmonary specialist who said there was lung damage from the Cytoxin. My lungs weren’t pumping correctly. He also said the first pain I had (the ER visit the first week) was most likely the same reaction.

Needless to say, my chemotherapy came to a halt as we concentrated on the lung problem. I discovered that 1 in 10,000 patients would have the reaction I had. I was lucky; my lungs repaired themselves over time.

By then it had been nearly five weeks since my last chemotherapy. Because too much time had passed, I was advised to have surgery. On August 9 I had a modified radical mastectomy with 9 lymph nodes removed. The result was good. The tissue around the breast was clear, and 7 of 9 lymph nodes were clear. The two positive nodes had tumor cells, as there were some in the veins that move the lymph fluid. My doctors told me this would probably mean radiation after additional chemotherapy. Note: I was told full arm movement would return in 4-8 weeks; two years later I am still doing daily stretch exercises and while I am greatly improved, I do not believe there will ever be 100% arm movement.

Note: following surgery I wore a Reconstruction Recovery Camisole which comes with a soft, lightweight breast form. I was able to wear this until my drain tubes were removed and all during radiation therapy, which was 28 daily sessions following my chemotherapy. The Camisole was a light fit that did not bind the skin in any way – a must until after the skin heals from radiation. Once at that point, I found the perfect breast form and bras. This isn’t as easy as it sounds and we do urge customers to see a certified fitter for the first fitting. Each body is different, and in the case of a single mastectomy such as mine, it can be challenging matching the other breast as closely as possible. Once you know what form works, ordering online is easier, more convenience, and possibly less expensive.

Exactly one month after surgery, I started chemotherapy again. Because of my reaction to Cytoxin, I was given Taxol. This time my treatments were weekly and took about 4 hours per session. I did not put in a port; thinking back, I probably should have. Taxol had its own issues: restless leg syndrome, joint paint particularly thighs and knees, nerve ending twitches, and numb fingers and toes.

The story is becoming longer than it needs to be, so I’ll summarize the rest of the experience. I completed 12 weeks of chemotherapy. Following chemotherapy, I completed 6 weeks of daily radiation.

It’s interesting to look back through my daily logs and see how sick I was. I forgot to mention that I acquired trunk lymphedema and spent time in physical therapy for that and the hand numbness. I also developed osteoporosis related both to the chemotherapy and family history.

I have not opted for reconstructive surgery; I just don’t have a good feeling about it. I am perfectly comfortable with my prosthesis and look totally normal.

The biggest changes in my life have been diet and exercise. My husband has become the chef in our home and finds he loves every minute of cooking healthy foods. We believe in lots of fruits and vegetables, protein and fiber. Throughout treatment I walked nearly every day, even when it was short distances. I believed then and believe now (I still walk or ride bicycle almost daily), that maintaining healthy cells is the most important thing I can do to help my body be prepared to fight off any unwanted cells in the future.

I enjoy every single day now. I don’t put off anything I really want to get done. I don’t dwell on the little things that just don’t matter any more. I am thankful to be alive.

Written by Amy B