With a family history of breast cancer, Cass always expected that she would have to deal with it someday, so she wasn’t surprised by the diagnosis two days before her 62nd birthday, but she never expected the length and complexity of the healing process.
I had been getting mammograms for years, but it turns out, given my genetic history, I should have been getting sonograms too. When I was diagnosed, they told me it was lobular cancer, the same as my mother and grandmother, which is very hard to detect with a mammogram, and more aggressive than ductal cancer. I was so angry, because my gynecologist knew my history and never suggested sonograms. And then there it was.
So, okay, now I’ve got cancer. I just have to deal with it. Maybe that’s not the usual reaction, but I accepted it right away and then I had the attitude, “let’s fix this thing.” Self-pity takes too much energy.
My ob-gyn recommended a local doctor, but my sister-in-law, who is a doctor, recommended I go instead to a teaching hospital where the care might be more advanced for this kind of cancer. I took the films to two excellent teaching hospitals and one called right back with a surgical appointment. It was boom, boom, boom. It all happened very quickly. But nothing went quite the way it was planned.
Treatment Troubles
I had a double mastectomy and expanders put in to support implants. But I developed an infection in my right breast. They had to take the expander out and I had to recover for another month before chemo could start. Then I had chemo every other week for 16 weeks. At first it wasn’t bad, but then everything was hard. Luckily, the hospital had an integrative health program that included exercise, and that helped me regain some energy, even feel human again.
After the chemo, they reinserted the expander and started the reconstruction process. That was so painful. Twice a week they were expanding the cavity, and it hurt. They really rushed the expansion due to needing to begin the radiation as soon as possible.. And after the last surgery, I picked up a bad cold and cough. The pain in my ribs was unbearable at times.
Then radiation started. Mostly that was okay, but two days after I completed treatment, I had such a bad radiation burn and was in tremendous pain again. I hadn’t anticipated that. And it was a huge set back. And treatment for the burn seemed to change weekly. It took about a month for it to finally resolve.
Repercussions and Revisions
I still have a lot of scar tissue and do massage and PT to work on the tissue. Then I was on aromatase inhibitors to suppress any additional cancer. Of course, that is not without side effects either. It leaches calcium from my bones, so I developed osteopenia and have had micro-fractures in my toes just from walking. It also causes joint aches and weight gain and maybe my brain was a bit foggier than it used to be. My doctor recommended I get an injection for the osteopenia, but I wasn’t convinced. Luckily, a good friend suggested switching to a different medicine which my oncologist okayed. Today my bones are stronger.
Months after I thought I was done, I developed lymphedema in my right arm, probably from the infection. Would it ever end? I was so tired of all the after effects. When would it ever stop? Fortunately, a wonderful surgeon had developed a new technique to transfer lymph nodes from my abdomen to my right axilla. At the same time, he removed my right implant, which was about to burst through due to the thinness of the skin. He replaced it using a diep-flap surgery and very careful skin grafting. It is a beautiful breast and I regret not taking this option for both breasts at the beginning of the process.
Assumptions vs. Reality
I wish the breast surgeon had had a conversation with me about the options and what to really expect from reconstruction. The doctors just assume you want implants and don’t present other options, don’t mention the possibility of infections and complications, and yet many women seem to have these problems.
If I had been warned about that, the possibility that I would need three or four additional surgeries, be left with substantial scar tissue and decrease mobility, I would have seriously considered not having implants. I had six months of additional complications due to the implants and am still seeing someone to help with the scar tissue. It really prolonged this whole situation. And as it turned out, my right implant looks totally different from the left. Plastic surgeons need to do a better job communicating about all this.
Support, Strength and Gratitude
Throughout, I was really lifted and sustained by the love and support of those around me. I was pretty depressed through chemo, and when I developed the infection, I just cried. But family members and friends were so supportive. My mother, with whom I had often had a rocky relationship, emailed me every day, my dearest friend from college would come by once or twice a week, and there was a local support group and a private counselor. I wasn’t in a place to impose and tell people what I needed, but people gave of themselves generously.
It was a fight from day one, but this one felt like I could have some control over. When I was married and living with my abusive husband, with coffee cups flying at me and the kids screaming – that was trauma. But this was just me and my life and I could make the decisions. I have always tried to turn my anxiety into action—to learn more or do something to help myself. So I just did what I needed to do. Today I am deeply grateful to have both my health and my life.