Annette, you did a lot of research when you were first diagnosed, you almost – as you phrased it – approached it like a journalist. What do you wish you had known in the beginning most?
I got a lot of second opinions the first time I had breast cancer. I kept looking for someone who could tell me that everybody else was wrong. I was also looking for a doctor who spoke the same language, and I finally found one who explained everything to me. He gave me a really useful piece of advice. He said: “There actually is a lot we don’t know. At the end of the day you have to make a decision about the kind of treatment you will have – and then you have to believe in it.” This is really important – that you pick the treatment that is right for you. It’s the same when you’re thinking about reconstruction. For some people, not having breasts at all after a mastectomy is the best idea; for others, reconstruction is the right choice.
I wish I had known all the options that were available to me. I found out in the end, through a lot of digging, but I’d love the information to be available easily for other women.
You drew a decision tree – a model to visualize the consequences of a decision that will also be part of the website. Why has it been helpful?
I made the decision trees in order to outline my choices and their possible consequences, both in the short and longer term. I thought it would make it easier to make decisions if I could find the answers to my questions all from the same source. If I make this choice, what are the consequences in five years – in terms of things like survival rates, needing other operations, having children, costs, recovery time? For example: If I choose to have chemotherapy, what would it do to my chances of survival. What kinds of chemo regimes are there to consider, with what possible costs and consequences. Or, if I choose to have reconstruction with an implant, does it mean I might need another surgery in three to four years?
Seeing it all laid out, made it easier for me to make a thoughtful decision.
What treatment did you choose?
The first time I had a lumpectomy and chemotherapy and then radiation. As difficult as the treatments were, I was surprised to find out that it was also difficult after treatment. I hadn’t known how scary it would be afterwards. While I was undergoing treatment, I was constantly busy. But then all of a sudden treatment stopped and I wanted to keep on doing something to keep the cancer from coming back. It took me a while to relax and let go. For some time after treatment ended, the least little thing made me worried about a recurrance. In the beginning when I got a cold I worried that it meant there was a tumor in my nose – and I had to remind myself: no — it is just a normal cold.
After my recurrence, I chose to have a mastectomy, in part because I already had my lifetime dosage of radiation on my breast; and I also opted to have reconstruction. There were a lot of options to consider: implants, no implants, reconstruction using muscles or flaps and in the end, I chose to have a DIEP flap reconstruction at the same time as my mastectomy.
You had a recurrence 18 years after you were first diagnosed. What had changed in terms of research and options?
The internet has made it a lot easier. The first time I physically went to doctors and went to libraries and friends came with me when I interviewed the doctors and took notes. Over the last 18 years, treatment options and survival rates have improved dramatically and a lot has also improved in terms of breast reconstruction, although I was surprised to find out that the improvements haven’t kept up with the incredible advances we’ve had in cosmetic surgery in general; and many women are offered virtually the same options I received so many years ago.
Has there also been a sense of getting your body back after being in the hands of the medical profession for a long time?
Absolutely. The whole procedure is very invasive– you are poked and probed and your body and time don’t feel like yours any longer. Both times I was interested in getting back to my pre-cancer, pre-recurrence life. Being a breast cancer survivor is definitely part of who I am, but it is not who I am. Breast cancer is one of many „life scars“ I carry. There’s a small one on my hand from when I ran into a glass window very young, one on my knee from falling of my bike when I was learning to ride, and now a small scar on my breast, where I had my reconstruction.
You said that the forums have been a very important addition to the dialogue with your doctors.
Yes, I found connecting with women who had gone through the same things very helpful. For example: My doctors couldn’t tell me how exactly my hair would fall out – would it happen all at once or gradually? Or how it would grow back? Women who had gone through the process could tell me.
One of the things we want to do with the foundation is to make it easy for women to connect to each other, to establish a safe place to ask questions.
The foundation has a strong message on beauty: That wanting to be beautiful after breast cancer is not frivolous or unthankful. Why do you think there is this sense of asking too much when it comes to the question of beauty after breast cancer?
I found a sort of pervasive sentiment out there that you should just be grateful that you have had treatment for breast cancer and not worry about the aesthetic after effects. As if trying to regain the way you looked before having breast cancer was frivolous vanity – one request too many. This seems especially crazy to me since we live in a sociey that goes absolutely nuts on cosmetic surgery in general. Suddenly, when it comes to cancer, aesthetics become unimportant.
I don’t think there’s anything wrong with wanting to look beautiful after breast cancer. It would be nice to see more advances in plastic surgery and more thought about all the aspects of reconstruction right upfront, not as an afterthought. I don’t see it as an either or choice– that either you focus on combating breast cancer or you care about the final aesthetic results. Why not both?
I’ll never forget when one of the surgeons I was considering using told that I was setting the bar too high, that with reconstruction, I should aim to have a good „breast mound“ that would give a nice appearance in clothes. Preposterous -for that I could have pulled out a sock from my top drawer! No, my goal was to look good naked.
Not all options deliver the results that a woman wants. I know many women who ended up with implants because that was all that was on offer. But implants can lead to additional surgeries down the road and often give poor cosmetic results because after a full mastestomy, there is no tissue left to put the implant behind and scar tissure can grow around the implants, which I am told can also be very painful.
For you, regaining the integrity of the body has been a big part of achieving normalcy.
Everybody makes her own decisions. Reconstruction helped me feel like I was reclaiming part of my life back, of feeling a little bit more in control. I didn’t want to brush my teeth every morning and look at a mastectomy scar where my breast used to be and think about cancer. I am open about my experiences and do a lot of public speaking about breast cancer, but having a reconstruction helps me set the time and place for sharing – it helps me keep breast cancer in perspective – that it’s part of who I am, but it’s not the only thing I am.
What is your advice to women who are diagnosed?
Don’t hide who you are from your doctors — be yourself. Ask your doctor for time, don’t become a number. I am a big advocate of taking someone with you when you are first diagnosed, someone who can help you listen and take notes. I am so grateful to the people who helped me do this, because I found out that I couldn’t recall big chunks of time in the conversations.
Reach out to a support network. I have been truly fortunate to have an incredible network of supportive friends and family to call on. After my first diagnosis, friends helped me with research; one friend threw a hat shower, after I had lost my hair to chemo, where everyone brought some kind of scarf or hat for me; there was my night owl friend that I could call in the middle of the night, when all the world seemed asleep and I felt really alone.
It was difficult to tell my friends about my recurrence, because I knew how high their hopes were for my continued wellbeing. But I did tell them, and got another life lesson — that you can ask for help again.
I encourage women to seek support, from your friends and family and/or to reach out to support groups and forums. This is not a journey you have to go on alone. I think cancer is best played as a team sport.
Would you say that cancer has changed you?
Yes, I think it has. I often tell people that for me, having cancer was like making a reduction sauce. The process boiled away all the nonessentials and left me with just the essence of who I am – stronger, and perhaps not to everyone’s liking, but honest. I think I am more relaxed about things – not to say I don’t ever get irritated in a traffic jam. I still have my moments. But overall, that kind of stuff doesn’t bother me as much. I learned a lot about letting go, about doing everything that I could, from research to finding great doctors, making informed choices and opting for a healthy lifestyle – and then letting go of the outcome. I wouldn’t say I am glad I had cancer. But I am glad for the life lessons that came from cancer.
In a way you teach them to those close to you, too.
Cancer made me confront my mortality, which in a funny sort of way has been empowering. Like most people I think, I had just never thought about it, sort of hiding behind a fictional feeling of immortality. I’ve discovered an inner strength that I didn’t know I had; I don’t tend to waste a lot of time; and, I have a different attitude towards risk. Caring about what people think is pretty low on my list. I feel very grateful and I think life is pretty great. Life is fleeting, and acknowledging this can make it more delicious. Cancer teaches you to live with uncertainty – make thoughtful decision and then no regrets.
> Link to: Katrin Kruse