Today’s post is from the ever-optimistic Dyanne Dillon. Diagnosed with stage one breast cancer less than two years ago, Dyanne swears by using the Think System as illustrated in the 1962 film The Music Man to counter the side effects of ongoing hormonal treatments. Her sunny disposition is contagious.
Tell us about your diagnosis.
After suffering from severe fibrocystic disease since my mid-twenties, I had finally had enough of the ultrasounds, cyst aspirations and needle biopsies and inquired about prophylactic bilateral mastectomy after a biopsy came back with “atypical” cells. A few months later, a tornado blew away my doctor’s office, the hospital, and all my medical records (and a third of my town), and it was put on a back burner. Six months after the tornado, I noticed a new lump among all the other fibrocystic lumps and bumps and began the procedure of ultrasound, mammogram, biopsy, again. I met with a general surgeon and a plastic surgeon, still talking prophylactic mastectomy. But this time, the lump was cancer.
What was your reaction considering so many times before it had not been cancer?
Deep down, I knew before the surgeon called me with the news. The fibrocystic lumps felt like squishy grapes; this one felt like a hard jellybean. And when the radiologist was doing the needle biopsy, I could tell by her demeanor that she was pretty sure it was cancer, even though you wouldn’t have known by her actual words. The surgeon’s voice on the telephone sounded like the teacher in the Charlie Brown specials right after he said the words, “It’s cancer.” I caught bits and pieces of what he said through the “wahwahwah” sounds he was making (stage 1, clear margins, non-aggressive). My then-13 year old daughter was with me, at the sporting goods store where the surgeon finally tracked me down on my cell phone, and I was trying not to alarm her, but she knew, too, she could tell by my voice that it was not good news. We drove home in silence while I tried to process it. When we got home, I told my husband, daughter, and 16 year old son the diagnosis without breaking down, and told them nothing was going to change. There would still be prom and dance classes and volleyball and life would go on as expected. And I tried to believe it in my heart.
What treatment options were presented for stage one breast cancer?
I had the option of a lumpectomy, but I never considered it. I was scheduled three weeks later for a bilateral mastectomy with free tram flap reconstruction. I was in surgery for over 12 hours, but had no complications. The tram flap incision, that went from behind one hipbone, across my abdomen, and ended behind my other hipbone, was painful for the first few days, but only when I moved. And even then, it wasn’t much worse than the pain from a c-section.
My sentinel node was removed and was clear. My tumor was tested and the Oncotype DX score was low enough that the side effects of traditional chemotherapy outweighed the benefits of doing it. It was also estrogen-receptor positive. As a still-ovulating person, that meant my ovaries had to be stopped. I was started on monthly injections of Zoladex. My oncologist and my ob/gyn talked about removing my ovaries, but the ob/gyn was reluctant to do it: he couldn’t do it laparascopically, because of the tram flap reconstruction, nor vaginally, because I had had two c-sections and there was a great risk of scar tissue preventing a successful surgery. The only other option was to open me all the way up, and again, the tram flap would be compromised. I will be on the Zoladex for five years, along with Arimidex, an aromatase inhibitor, daily.
How has your treatment affected you current well-being?
I was 51 when I was diagnosed, so fertility was never an issue. I made a decision that I would not suffer from side effects, but despite my optimism, I still suffer some from them. Weight bearing exercise done 3 times a week is supposed to help with bone pain and prevent loss of density, and I have taken that very seriously. When I take a break from my exercise regime, I suffer pain from my hips down. I have also been fighting a weight gain of 10-15 pounds, and I mean fighting tooth and nail. It does not. come. off. My muscle tone has also gone to mush, in spite of all the Zumba classes, time on the elliptical machine, and work on the weight machines. I also feared vaginal dryness due to lack of estrogen, but thankfully, that hasn’t happened.
How has having breast cancer moved you forward in your life today?
I have always been a positive person, but I think that refusing to dwell on the “what-ifs” helped me immensely. Not that I never broke down and cried. I did. I worried about not being able to watch my children grow, not being there for them. But I shook myself off each time and gave myself a mental slap in the face.
I didn’t want to forget anything that has happened, so I started a blog about it. I also hoped someone, somewhere would find it and be helped by it. Last month, I got an email from a woman who Googled the plastic surgeon’s name and “free tram flap” and found my blog. Because of a strong family history, she was scheduled for a prophylactic bilateral mastectomy in a week and was doing a little research. She even lives in my town. We arranged to meet, and we spent a couple of hours talking about what to expect from her procedure and looking at my “after” pictures. I visited her this weekend, nearly two weeks after her surgery, and she said visiting with me gave her such a sense of calm about the whole thing. It’s probably one of the single things in my life that I am most proud of (other than my children), that through my experience, I was able to help someone else. I also know several friends who had put off mammograms have now had them done because of me. That’s the best kind of feeling!
What sort of challenges do you see ahead of you?
As long as I stay on my meds, take my supplements, and continue my weight-bearing exercise regime, my odds are good that everything will be fine. But there’s always that chance, always that feeling of waiting for the other shoe to drop.
And I can’t forget that this is my legacy to my daughter. That she will have to be vigilant about self examinations as I was. That her future holds lumpy, fibrocystic breasts and an increased risk of breast cancer. That would be the one thing I would change if I could. I don’t care that I lost my boobies. They were bad. They hurt all the time. I have never mourned them, not even once. (The added benefit that the news ones are gorgeous and perky, along with my flat stomach, doesn’t hurt, either.) But if I could take away that risk for my daughter, promise her that she would never have cancer…
Dyanne Dillon says she feels like an eleven year old living in a 50-something body. She is a wife, mom, Pre-K teacher and a self-proclaimed Pollyanna. She optimistically blogs about her breast cancer experience and life thereafter at I Want Backsies, a name inspired by the children’s book A Bargain for Frances by Russell Hoban. You can also find her on Twitter at @yanneda.