Wednesday, May 15, 2013

Day 1,057: Angelina Jolie and Me

I can't count the number of people who have asked me "what do you think about Angelina Jolie?" Those people are not asking me what I think of her acting skills or her tattoos or her large brood of international children. They are asking me what I think about her discussing her decision to have a double mastectomy because she is BRCA+. My first thought is this: What does that have to do with me? She's BRCA+. I am not. I had breast cancer. She did not. It's strange how people think that if a celebrity deals with something cancer-related, you must just UNDERSTAND each other. On the other hand, moments like these are valuable because they open up a conversation that is much wider than any I or any of the normal run of the mill average Jane cancer survivors could elicit. So here's my two cents on what I think about Angelina Jolie, and then here's my 50 cents about what I think about a lot of other things:

Good for her. Angelina Jolie could be awesome or annoying--I have no idea, and neither do you. But one thing is true: She knows how to use her celebrity to get the word out about things. Her situation is one in which loved ones died from cancer, and she found out she was susceptible as well. She made a decision that she sounds very happy with, and her family is happy with it, and she told people about it in an editorial that is quite well-written. She speaks some useful truths: acknowledging that her risk of breast cancer does not go down to zero due to the procedure, highlighting that only a small fraction of women with breast cancer carry the BRCA mutation, discussing the high cost of genetic testing and giving a shout out to lower-income women who don't have access to it, putting in writing the shocking number of 458,000 people who die from breast cancer each year, saying that most women with BRCA have a 65% chance of developing breast cancer (Jolie has been criticized for saying that she reduced her risk of cancer from 87% to 5%--because 87% is too high a number for BRCA+ women. However, if you actually read the editorial, you will note that she gives the correct percentage for BRCA and then says that her doctors gave the 87% number TO HER SPECIFICALLY). She has been criticized for talking about the minimal scarring, the beautiful results and the quick recovery time. But if she had minimal scarring, beautiful results and a quick recovery time, who are we to judge?

Good for her.

It is not Angelina Jolie's fault that the media, women, breast cancer advocates and everyone else under the sun will use her situation to spread false information about cancer, about breasts, about mastectomies. She told her truth and is using her fame to help other people who might find themselves in her situation. If Angelina Jolie undergoes an ooverectomy and volunteers herself for surgically-induced menopause, and then goes out there talking about how difficult it is to deal with the changes of menopause for young (and all) women, she will reach that Goddess-like state of awesomeness for me. And if she doesn't do the surgery or doesn't talk about it if she does, it is none of my damn business. I am also left to wonder why there were so many articles that asked Lance Armstrong about his testicular cancer, without any of them even mentioning his testicles or lack thereof in the case of the one.

So that's my two cents. Here's my 50 cents.

If you put 1,000 women in a room, 120 of them, give or take, will develop breast cancer in their lifetime. Six of the 120 will be BRCA positive. Those 6 women are important. The discovery of the BRCA mutation is one of the most exciting cancer-fighting developments that exists, because it offers a chance for prevention for some women, but also for this reason: Knowing you are BRCA+ IF YOU HAVE BEEN DIAGNOSED WITH BREAST CANCER ALREADY helps doctors manage your treatment plan. It is also important because it is one small window into the role of genetics and DNA sequencing in cancer. It explains only a tiny fraction of breast cancers, but that is better than nothing.

Many of us have nothing. I am one of the 114. More specifically, I am one of the 18 women in the room with triple negative breast cancer, an elusive and mysterious beast.

We have nothing to go on--we know about a slew of risk factors, many of which didn't present in our lives, many of which do not even apply to our non-estrogen-receptive type of breast cancer. If you are a thin 34-year old non-drinker who exercises like crazy and is busy nursing a baby all day, you don't think you will have breast cancer. And, yet--maybe, you find out that you do.

So, given that she knows that she is speaking about a specific situation that a minority of women might find themselves in, I appreciate Jolie's sentiments for what she does NOT say. She does not say that mastectomy was the right choice or the only one. She says it was the right choice for her. I know other women in the same situation who have made different choices. They were not WRONG.

This relates to one of my personal pet peeves about how we talk about breast cancer. There are so many in our society--including cancer survivors--who talk about certain surgeries or treatment options after a cancer diagnosis as if they are the only right decision. People say things like "I had cancer in one breast but I had a double mastectomy because I'm smart, because I'm educated, because I wanted to do all that I could." The implications there are that those who had single mastectomies or lumpectomies are dumb, uninformed, even lazy. The reality is that breast cancer is complicated. I was told, after a lot of teeth pulling on my part to get the docs to be straight with me, that mastectomy--single or double--would not increase my chance of survival or disease-free life AT ALL. Lumpectomy and radiation would offer the same benefits. I chose to do the latter for a variety of reasons, which I've outlined here before, and I think it is totally reasonable and understandable that other women make other choices. For me, I heard what was under the doctors' admissions of the lack of difference in my chances. My cancer subtype, triple negative, was MUCH more likely to metastasize to a distant area of the body than to recur in the breast. And cancer confined to the breast never killed a single person--not one. If my cancer recurred locally, but didn't spread, I would survive. Mastectomy would not lower the risk of cancer cells that had spread throughout the body. Only chemotherapy could do that, and there was no guarantee that that would work either. In 2010, they offered completely different chemotherapy for TNBC than they do today--but of course, I couldn't know that in 2010.

I have absolutely no idea if I made the "right" decisions, and neither do my doctors, and neither do you. No woman with breast cancer knows that. This disease can rear its ugly head when you least expect it, and that is a truth that millions of us have to live with every day, without knowing if the methods we used worked. We are doing the best we can with the information available to us at the time. As I said to more than one doctor who asked me what I wanted to do, for each one of the literally hundreds of decisions I had to make about my care and treatment plan: "I want to go home."

And that was the one choice that I just didn't have. So let me be the one to say that there is too much emphasis on our POWER over this thing--too much emphasis on what we can control, what is right, what is "heroic."

Let me say this: You are not more heroic or more informed or smarter if you are diagnosed with cancer and get a mastectomy, if you have to do chemotherapy, if you have a positive attitude, if you survive, or anything else. My husband said it this morning: "It's heroic to deal with breast cancer--period." This is not a competition, nor a game.

There are 120 scenarios present in the 120 women who find out they have breast cancer. Some might choose mastectomy in part to avoid radiation or chemo and then find out that they have to do it anyway because cancer has spread to the nodes. Some women undergo every aggressive treatment and surgery under the sun and their cancer metastasizes despite their best efforts. Some women do a lumpectomy and radiation only and live long lives without a recurrence. The problem right now is that we don't know who is who. BRCA provides a glimpse, and that is a great stride that has been made in cancer research. But currently, only 1-2% of breast cancer research dollars go toward understanding metastatic disease--which is the only type of breast cancer that has ever killed anyone. That is shameful.

My personal favorite breast cancer celebrity is Robin Roberts. I admire her not just because she is the first famous person I know of to talk at length about TNBC or because she looks so amazing bald. I admire her for her honesty in talking about the difficult things. She has said things like "There is no remission for my cancer," "I'm not out of the woods," "you have days that are so hard you don't think you can go on," and she has shown, to millions of people, the terrible potential effects of toxic chemotherapy as she fights a potentially fatal blood disease brought on by her treatment for breast cancer. Many women will never go through what she has gone through, but she has given a public face to those who already have.

If I were famous, I would talk about triple negative breast cancer, and the relatively high chance of metastasis. I would talk about being a nursing mother at diagnosis. I would talk about sexuality and menopause and my hatred of pink and of slogans like "groping wives means saving lives" and the seemingly ubiquitous feeling that we are, that I am, just breasts and hair and nothing more. I would talk about what is true for me. I am not famous, but that is what I have been doing in this forum for the last three years. I don't claim to represent anyone else. I have talked about this body, this disease, this experience, this woman.

The thing we should all remember about something like cancer is that behind every positive story of empowerment, behind every happy ending, there is so much suffering, fear and death. It is the least we can do for those who experience that reality. And there are many, many people who understand this--including some who are famous, and some who are not.

The other day at my gym, people were discussing the community walk that raises money for breast cancer treatment at a local hospital. A few women were talking about how big this walk has become--more than 12,000 people participated this year, and it started out as just a handful of women walking down the street. One woman remarked that this was inspiring, and amazing. The other woman, older than the rest of us, with a wizened look on her face that told me she probably knows a lot of things that the rest of us don't know, said this:

"Well there are so many because, Jesus. There are so many."


  1. We got TNBC in 2010. One year after my husband lost his job & insurance in '09. We're living on Love & a Prayer, with zero income. What hurts me more then how I feel like I was tortured and left to die. Is how people discredit my explanations of TNBC facts. Like you're out of treatment. You're Well as can be. Kiss the ground and be thankful you're alive! I'm in pain from head to toe. Nonstop! My hands drop anything I hold without warning. My feet feel like I'm walking on hot coals and fire as someone pounds my toes with a hammer. My body does the strangest things ever in my life! Hard to describe. I lost more teeth pieces and I can't afford care. I just want to feel human and alive! I want a sliver of Quality of Life!! I wish people understood us!!! What you've written is spot on. Thank you most kindly! I wish you all life's best. I wish there was a way for all of us to have that testing done! I located my Bio mom in time to find her Dying from Breast Cancer. She was just 46. I was 19 & pregnant. I never heard she loved me, if I had a dad or any family. I couldn't share she'd be a grandmother. She didn't live and I never saw her again! Being a Young Motherless mother was hard to do! My husband saw her Dying look on my face when I got TNBC. When I wasn't much older then she was when it claimed her life! He begged me to live! So I'm still here. I'd love the testing to help my married daughters and my grandchildren!! They deserve to know!! Everyone is so beautiful ,great, amazing, inspiring and so special. So worth saving!! We have to have the words out. We have to be able to get the needful tests & care through treatments! There should be Quality of life after cancer, without recurrence! There should be a rainbow after the storms, rain and sun.. Thank You, Angellinda from Custer, WI. The middle of NO where!

  2. Well said, Katy. Thank you for weighing in.

  3. I once worked at Swedish Covenant Hospital and while there, I became acquainted with the Chief of Oncology. He was a pleasant man with a French accent (which I never held against him) and he said, "If you live long enough, you WILL get cancer." Most people die before they get their cancer - heart attack, stroke, bus. They die of other causes - and even old age, as far as that goes. That's called "Not living long enough to get your cancer". The point is that cancer is a mistake in replication of DNA in dividing cells.
    What causes the mistake? Chemicals in your body, maybe. Or a bad gene, maybe. A gene damaged by some form of radiation, maybe. Or maybe it's just an error. Maybe.

    Each case is unique. Treatment is unique to the individual, in many cases. Most cases, maybe. Or it should be. Cookie cutter approaches are probably not the right answer.

    All of us are susceptible. Testing for the most common types of cancer at an appropriate age is the wisest approach to prevention. Given women's special susceptibility to certain types of cancer, self exams and mammograms and pap smears are appropriate at ANY age.

    I am so glad you found yours, and had it treated. It saddens me that this has to be an ongoing concern for you, but truth? It should be a concern for everyone.

    1. I think we can make strides towards risk reduction, but not prevention--at least not yet. And early detection only helps some people. The reality is that 50% of people will develop cancer at some point in their lives. If we all lived to be 200, maybe that number would be 100%. Like all odds, it's a gamble. Only 2% of women with breast cancer fit my demographic (under 35 at diagnosis). The fact of my previous cancer increases my odds of another cancer by 400%. So we are all susceptible, but some are more susceptible than others. You just keep marching; nothing else to do.

  4. I had risk-reducing bilateral mastectomy, but I've never been under the delusion that it was the right choice for anyone else, or that it would decrease my chances of dying from cancer. I did it because I thought the other options sucked more.

    It was a personal choice, for me, and it was right, for me. I can live with it, I can see a future for myself with it. Not true of the other options, for me. Breast surgery is not for the faint of heart, I would never push that on another woman. But if I know someone who's thinking about it and wants advice, I'm all hers.

    1. Amen! The options suck in these cases. Everyone's preferred option would be not to have to make these decisions, or to "go home" as I said.

  5. Love how you word your opinions, Katy. When it comes to medical issues, it's helpful to remember that they call it "practicing medicine" for a reason. They don't have all the answers and our bodies are not all cookie-cutter-copies with the same solutions applying to all.