Streams

Survival, Overrated?

Thursday, May 08, 2008

Surviving an ordeal with breast cancer can lead to life-changing epiphanies -- or not. Shelley Lewis, news producer and author of Five Lessons I Didn't Learn From Breast Cancer (And One Big One I Did), tells us her story and the value of revelation-free survival.

Guests:

Shelley Lewis
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Comments [31]

eva

Cesar,
Thank you for sharing your wise doctor's advice. His insight is so thoughtful, and must have given you even more courage. I'm glad to hear that you're doing well.

May. 08 2008 01:26 PM
Cesar Carrasco from New York City

Want to congratulate Shelley Lewis. It was very refreshing to listen to her experience as a woman with cancer who has not felt she fit in the "philosophy" of the cancer survivors' movement, and at the same time embracing her feelings and perceptions of what she needed to do to continue living emotionally/psychologically healthy.

I've been HIV poz for a couple of decades and very much involved with the HIV support, and survivors/activists on the late 80's and 90's. If there is something I could never achieve was a state of acceptance of a probable death in my mid 30's. Much less to embrace the then prevailing "survivors" attitude and philosophy that AIDS was here to teach something. Among other things to see death as just a transition; something one should strive to accept with grace and peace of mind. I remained angry (at life, god, etc) and frustrated because of the slow progress in medical research and government leadership boosting anything that could save my life. At the same time I also remained steadfast about living life to the fullest, and certainly not preparing (at least consciously) to check out. Once, when I shared these thoughts/feeling with my doctor, he told me something so wise and so wonderful. He said to me that perhaps my anger and frustrations, and inability to achieve some form of nirvana state was probably my own way to staying alive. This may sound terribly simple, but believe me, staying alive was something extremely precious for me then.

May. 08 2008 11:55 AM
Lee Moore from New Jersey

I congratulate Shelley on her position. But I am a Traumatic Brain Injury (TBI) survivor and I wish TBI would get some of the attention given to those who go through breast cancer and it's treatments. . Survivor is appropriate for TBI, according to Shelley's definition - brush with death. The numbers of TBI survivors is only growing as soldiers return from Iraq. (estimated at 10,000 to date). There are 1.5 million people each year who sustain TBI. And most are not properly diagnosed. 5.3 million Americans are living with a disability as the result of a TBI. I'll stop. Thanks for letting me go on. But while breast cancer is a terrible and scary thing, everyone is aware of it and no one, except those affected, know about TBI. Bob Woodruff began his reports when he was well enough, but where are the reports now? I'll stop, I'll stop.

May. 08 2008 11:46 AM
Dennis from Inwood Manhattan

Brian-

You can't understand why Corzine would quit the Senate to become governor of NJ. A senator cannot get anything DONE! Why do you think Senators Kerry, Clinton, Obama, McCain run AWAY from their record?

May. 08 2008 11:35 AM
Helen from Sunnyside, NY

I've just passed the 21st year of my lumpectomy and radiation. I still never say that I am cancer free, that I battled breast cancer or that I am a survivor. However, I strongly believe in support groups. It has been 20 years since our group formed. We have stayed together and have been there for each other through other cancers and much more.

May. 08 2008 11:31 AM
Kate from NYC

Something that is rarely talked about is the link between breast and ovarian cancer. Somewhere around 30 percent of women who beat breast cancer later develop ovarian cancer. It happened with my mother. There is a connection, but there doesn't seem to be much discussion of it. Perhaps less "walks for the cure" and more research into the cause?

May. 08 2008 11:29 AM
Amy Heller from Harrington Park, NJ

My mother had breast cancer in 1966 and had a radical mastectomy (back when radicals were really RADICAL), had another separate breast cancer in 1976 (another mastectomy) and then died of the disease in 2003--even though she had no breast tissue left.

Sadly, even survivor's may not ultimately survive this awful thing. My mom's revived after more than 25 years cancer free.

I hope that this doesn't happen to any of you.

May. 08 2008 11:28 AM
Amy from Manhattan

Shelley, thank you so much for saying these things! So much I could say (pink? bleh!), but I'll stick to 2 things:

I think "survivor" was 1st introduced as a substitute for "victim," possibly originally for women who had been raped. It does have some value in that sense, but maybe it's time to mave on from that. (Andrew's suggestion in #7 is great!)

On the other hand, I felt the same way about "battling cancer." First, it's a cliche; 2nd, I felt that you don't fight a disease, you treat it. But when I said this to my mother, who had breast cancer, she said, "I feel like I'm in a fight every day of my life." And I couldn't argue with that.

May. 08 2008 11:27 AM
Jenny from Brooklyn

Link to the Ehrenreich article:
http://bcaction.org/index.php?page=welcome-to-cancerland-2

May. 08 2008 11:26 AM
Andrea from Ramsey, NJ

Shelley, thank you so much for sharing your experiences. It is so refreshing to hear someone who handled her disease on her own terms and in her own way. I'm a two-time cancer survivor (ovarian & pancreatic). I also eschewed support groups and extensive 2nd opinions.

I am me. I am not my disease. I got the treatment I needed (surgery, chemo, radiation) and got on with my life.

May. 08 2008 11:25 AM
Mike from lower Manhattan

Correction:
The Ehrenreich essay is titled, "Welcome to Cancerland," not "Adventures in Cancerland."

May. 08 2008 11:24 AM
Nancy from manhattan

Good for her! I live in a Manhattan co-op, and kept my cancer a secret from all of the other residents. Our son was then 7, so this was miraculous! A good wig was a big help, and prevented all those "helpful" comments from the other residents (How ARE you today??)

May. 08 2008 11:24 AM
MichaelB from UWS of Manhattan

Claudia,

Because Breast Cancer as has been done with certain other "key" diseases, has been politicized and icononized. It is something that agendas beyond the medical, can be attached to.

This tends to have the effect that research moneys are not properly distributed according to other factors (i.e., numbers of sufferers, impact of disease, where research is, etc.)

I don't understand -- well I understand it, but I am really put off by this Boomer notion, the woman who said she "was angry" at having learned she had breast cancer.

I feel sympathy for the lady and anyone who is ill, but angry at whom? At what? What if she had learned that she had any other disease? What do we expect in this society, to live forever? As it is, statistically, we live longer than any humans in history and the longer we live, the more suseptible we are statistically to more and more types of diseases.

What else in life isn't fair? Possibly everything.

May. 08 2008 11:22 AM
MD from ny

Survivor emanated from 5 year survival rates which was how the effectiveness of chemotherapy was determined. Patients were the passive people in whom the meds worked vs those in whom they didn't.

I agree with author that the use of the term is demeaning to those who fought to survive in concentration camps, Japanese prison camps, etc. And I'm all in favor of support groups etc.

BTW, regarding previous segment re Benadryln have opposite effect as side effect

May. 08 2008 11:22 AM
cynthia from sarasota, fl

I lost a breast 3 days before my 41st birthday. No radiation and chemo. I walked away ....from what could have been so much more awful. They all were suprised that I didnt want any reconstruction. surgeon wasnt excited that reconstruction would last another 40 years without having to redo it. that was 5 years ago. Never went to group feel good/complaining therapy sessions. Husband so cool with it. I dont tell people anymore. What did I learn? Im happy but when I look in the mirror these last years I am realizing that I miss it so much. Yes I did lose a part of my body.

May. 08 2008 11:22 AM
Gene

My sister-in-law in the 1970s was given 2 months to live. She had 3 young children. But this doctor was doing this new thing with radiation, and she went for it.

Her right side was severely damaged, the bones of her arm and shoulder pitted and prone to break. 30 years later, she could barely move it, but exceprt for some horrendous breaks, had had a wonderful life, and was much beloved of her family.

She and my brother _loved_ that doctor.

The breast cancer came back in the late 90s, and she had a mastectomy. And didn't see a doctor for over a year, when it had returned and metastasized hopelessly.

She and my brother came from an era when doctors were trusted implicitly, and while we were all furious the doctor had not ordered regular checkups--he did give us 30 wonderful years with her.

May. 08 2008 11:21 AM
julie houston

Shelly has the luxury of a "breast cancer community" and is too critical of what's being done for breast cancer "survivors" via support and public knowledge and screenings. She should only have "survived" pancreatic cancer and whipple surgery, a cancer that has terrible "pr" in terms of survival and very little money for public awareness.

May. 08 2008 11:21 AM
nina from new york

I was diagnosed with DCIS when I was 48. What still makes me angry is that our treatment options are all so savage--chemo, radiation, cutting off our breasts. I was/am angry, angry, angry... I couldn't find a support group where I could express this anger. Still can't. I'm expected to be nice and civil, a "survivor." Where are all the angry women? Why aren't less aggressive treatment modalities being pursued? My body is not a battlefield, and I do not not want the medical/industrial complex fighting inside it!

May. 08 2008 11:20 AM
Brian from NJ

The quote, I believe was:

"Egor, -smack- Human Bites!"

May. 08 2008 11:20 AM
nw from nyc

interested...and sorry if i missed a mention of this...but her book seems very similar in tone to barbara ehrenreich's piece--i think in harper's--welcome to cancerland--in which she's very cynical about the whole breast cancer "movement.". interested in lewis' take on that....

May. 08 2008 11:19 AM
Juliana from Brooklyn

I have a good friend who is a survivor of ovarian cancer. I wonder whether or not the popularity of breast cancer tends to outshine or alienate survivors of other women's cancers.

May. 08 2008 11:19 AM
Dawn from Brooklyn

Ms Lewis is spot on! People should be angry about the fact that causes and prevention are widely overlooked. We have a lot of 'walks' for a cure. We need to get all of those women/men/survivors together and march and protest that we don't know why 'everyone has it'
I also agree w/ the semantics issues. I am expecting a baby and everyone wants to know if I'm 'thrilled' and turns it into a cutesy, silly thing. This is terrifying and I don't want to see a bunch of ruffles and join a bunch of chat groups. I am planning a homebirth without (horror) a doula and I think people deserve to personalize their life experiences & not simplify them.

May. 08 2008 11:18 AM
Elizabeth from Monmouth County NJ

As someone who has gone thru double mastectomies, chemo, reconstruction, etc., I have found that the way you deal with your life while healthy is most likely the way you'll deal with illness: if you are a warrior who faces things head on, you'll do cancer that way; if you need support, you'll join groups; if you're prone to depression, angst, anger, etc., you'll likely react to the diagnosis and treatment in that way... so this book will be helpful for like-minded women, and those who are perhaps less self assured or confident will be more likely to go for the more inspirational memoirs that are out there ... but I do think no matter how you react, you do come out of it stronger and in many ways better, because whether it's a postcard or an invitation from the grim reaper, once you know you're on the mailing list, you can't help but change!

May. 08 2008 11:17 AM
Mike from lower Manhattan

Barbara Ehrenreich wrote an essay a few years ago titled, "Adventures in Cancerland." It covers the same ground (arguing that women should be furious at how our society has created a bizarre mindset towards breast cancer - the survivor mindset with all the cute teddy bears and gimmicky crap) and was published in the Best American Essays collection. Highly recommended. Ms. Shelley is not alone in making this argument and she is not the first.

May. 08 2008 11:17 AM
Andrew from Brooklyn, NY

I have a good ideas as to how she chould refer to herself instead of "breast cancer survivor", how about... "Shelley"

May. 08 2008 11:16 AM
roz leviatin from greenburgh, new york

My husband was diagnosed and treated for melanoma about a year ago. Although we certainly knew how serious this was, the words "survivor" and "oncologist" and "support group" were NEVER mentioned. I don't even remember anyone using the word "cancer." It all was dealt with by dermatologists, and we were struck by how differently this was handled in terms of language than other cancers. Is this usual with melanomas?

May. 08 2008 11:15 AM
Sarah from Ringwood, NJ

I agree entirely
I was diagnosed with breast cancer six years ago. When I called my daughter to tell her, she said "Oh Mommy, you're not going to dies of breast cancer - this is just going to be an annoyance!". She was right. At this point it is like nothing ever happened and I certainly never think of myself as a breast csancer survivcor any more than I thi nk of myself as an influenza survisor or survisor of any of the millions hardhips of life.

May. 08 2008 11:15 AM
Claudia from Jersey City

I live with Crohn's disease, which has no cure and can be halted with grisly surgery, wildly expensive drugs and often no slide into remission and exhaling. Why does cancer get all the books and groups when a lot of women are struggling with diabetes and heart disease and other items which actually kill more women than cancer does?

May. 08 2008 11:14 AM
James from Jersey City

I've grown to hate the phrase "lost the battle with cancer", used to describe someone who has died from cancer. How can we describe an individual's final act as a loss? I sincerely hope this language changes. I love your guest & her wonderful outlook. See also, Crazy Sexy Cancer!

May. 08 2008 11:14 AM
tom from upstate ny

Anyone who has been diagnosed with breast cancer may want to read the book "What Your Doctor May Not Tell You About Breast Cancer". It's your body, your body. Inform yourself.

May. 08 2008 11:14 AM
Christina from Clinton Hill

Unfortunately, the boomers having breast cancer is the tip of the iceburg. WIth all of the hormones in our food- our girls reach puberty much earlier and will be at much higher risk than this generation battling it now.

May. 08 2008 11:10 AM

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