Breast Cancer In Their Own Words: 5 Women Speak

  Last year I wrote a blog post bemoaning the pinking of America in October.  I argued that the focus on breast cancer, while noble, actually diminishes the overall focus on women’s health care in terms of cancer occurrence in women.  Pinking also perpetuates the long-held objectification of breasts.  A woman is more than her boobs, especially where cancer is concerned.

I participated in a breast cancer social media forum on Twitter in early October, 2011, because of my work as a cancer survivorship advocate and LIVESTRONG volunteer leader.  The topic was the yearly pinking of America.  It was clear from that forum – where tweets were flying at a rate of 4 per second – that a backlash against pink is beginning to take root in America, and I began to wonder how deep the emotions run.

I asked 5 women I know – all breast cancer survivors in various stages of survivorship, all with very individual experiences – to share their thoughts on these 3 questions:

  1. Did / do you feel obligated to “pink up” and do you feel ostracized if you don’t?
  2. Do you wear pink and if so, why? What does it mean to you?
  3. Would you change anything about the breast cancer movement and if so, what?

We conducted our chat via Facebook Messenger over the course of one week in early October, 2011.  I hoped to use the responses as a small part of a planned article on the various colors of cancer. However, I was completely unprepared for the intensity of the responses, and I struggled with how to appropriately convey the passion and gut-wrenching, brutal honesty these women shared with me.

I am humbled to share our conversation in its unedited entirety.

Meet the women:

Carrie N. is a married mother of 2 from Beaumont, Texas.  She is a stage 4 breast cancer survivor currently in clinical trial treatment at MD Anderson Cancer Center in Houston, Texas.

Carrie C. is a single mother of 1 and published photographer from Wichita, Kansas and Houston, Texas.  She was diagnosed with ductal carcinoma in situ (DCIS), the most common form of non-invasive breast cancer.

Rica M. is a single mother of 2 from South Salem, New York, and a volunteer Leader for LIVESTRONG.  She was diagnosed July 19, 2011 at age 37 with stage 1A in situ and invasive intra-ductal estrogen responsive positive cancer of the right breast with a positive BRCA 2 gene result.  She underwent a double mastectomy and is currently undergoing chemotherapy.

Stacey G. is a married mother of 2 from Katy, Texas and is a school nurse.  She was diagnosed with ductal carcinoma in situ (DCIS), the most common form of non-invasive breast cancer.  She underwent a double mastectomy and her cancer is currently in remission.

Kathi C. is a married mother of 1 from Richardson, Texas.  She is a 5 year breast cancer survivor and works in hospital administration for one of Texas’ largest healthcare providers.

 Carrie N.:  I was so unashamedly sick of pink that I was almost militant about it.  Everyone kept dropping stuff off at the house that had the pink ribbon on it, “hope”, pink balloons, pink this, pink that…I really thought I was going to go nuts.  The best was a pink sequined hat with a dark pink sequined “pink ribbon”…yeah, like I was going to wear that to the grocery store.  It was a constant reminder that I was sick and different from all of my friends.  Now, I wear it as a badge.  My cancer is stage 4 and I am going to have to fight like hell now, now matter what is going on this month.  I want to be the poster child for why you should get mammograms regularly and early.  I want to be the symbol of courage for my children.  I want Jonathan [Carrie’s husband] to be proud of me.  Actually, I think the majority of humans that live here in Beaumont with me are proud of me and my continued effort to make cancer history.  I head back to MD Anderson [in Houston, Texas] on Friday to start another year of treatment.  I am praying to God that He will heal me completely…no matter what color I have on.  I am glad that this community goes all out to support me and my intense battle to save my life.

Rica:  Yellow, to me, is the universal cancer color.  In my opinion, Komen has killed pink for the cause.  Personally, I associate pink with Mary Kay [Rica is a Mary Kay consultant].  Right now, I’m wearing a Think Pink t-shirt and Think Pink pants. Why? Because I bought these years ago for Mary Kay PJ parties.  I’m not sure what color is “right” anymore for breast cancer.  Maybe a BOLD pink, a DIFFERENT pink.  Anything but a shade that Komen can, or should, be able to use, market, and exploit.

Carrie N.:  Rica, I agree with you about the exploitation by Komen.  I am afraid to voice my opinion because it is not PC.  If people ask if they can donate money for breast cancer research in my name, I ask them to give locally to the Julie Rogers “Gift of Life” Program here in Beaumont, TX.  This program provides free mammograms, prostate screenings, and is a huge community educator.  I am glad I am not a cult of one with my feelings toward Komen.  I haven’t been turned off by the [American Cancer Society] and have had a good experience with their efforts so far.  I lived in Austin when Lance [Armstrong] started LIVESTRONG, so I am huge supporter of his efforts.

Erik:  There’s been no real solid local cancer care program [in Beaumont, Texas] other than Julie Rogers Gift of Life (JRGOL).  The Rogers family members are huge community philanthropists.  Most Beaumont cancer patients make the 100 mile drive to Houston and MD Anderson for their care.  JRGOL provides much needed first-line support, but it doesn’t reach everyone it needs to.  There’s still stigma in Beaumont about coming forward with cancer, paying for it, and making the long trek to Houston multiple times a week.

Rica:  For me, Komen hasn’t done much, frankly.  I’ve called them for assistance, support, etc so they’ve had their chance to convert me.  Instead, in response to requests for help, I’ve been added to their bloody marketing list, and I was sprayed with their perfume as I walked through Lord & Taylor.

Stacey:  I was diagnosed in July, 2010.  My mastectomy was in August and I had a reconstruction at the same time.  I contracted an infection and had to have several surgeries to revise the reconstruction, resulting in an eventual complete fail.  My tissue expanders were finally removed.  My ribs and sternum were visible through two enormous holes in my chest wall.  I had two wound vacs, which put constant negative pressure on the wound beds to encourage healing, and a peripherally inserted central catheter, or PICC line, through which I received antibiotics and other medication.  

By the time I knew that my breasts were completely gone and I would never have any again, it was October.  Breasts were everywhere.  Pink, which I thought would be a color that would make me feel hopeful, was EVERYWHERE.  Everyone on all social media were posting all kinds of nonsense about what your breasts look like, for instance, (o)(o), and the rubbish that was what color your bra is and not telling guys…what this did for awareness, I do not know!  Anyway, I came to DESPISE pink ribbons, and that is how I feel to this day.

We should be able to talk about our breasts without making it cutesy to make it more palatable to people who don’t have it.  I think the pink ribbon “dumbs down” breast cancer.  Years ago we couldn’t say the word “breast.”  I feel like the pink ribbon just replaces that.  Breast cancer awareness is not just about bra games on Facebook, and it certainly isn’t a pink ribbon.  Breast cancer is a gut-wrenching loss.  Breast cancer is being 36 and no longer feeling like a complete woman because I have no breasts at all.  Breast cancer is abandoning your dreams of having children with your husband because your oncologists advise against it.  Breast cancer is being 36 and lingerie shopping at wig salons.  Breast cancer is horrible neuropathy, which necessitates medication with uncomfortable side effects for the rest of my life.  Breast cancer is waiting for the next lump, or an abnormal pap, or paranoia about every freckle.

It certainly is NOT a pink ribbon.

And that is my very unpopular opinion, but I stand behind it.  People can criticize it when they wear my prosthetics for one single minute.

Kathi:  I’m 5 years out and my feelings have changed as time as marched on and I have passed the “magic” line in the sand that say my chances of recurrence have reduced.  When I was diagnosed my 3 sisters-in-law sent me a huge bouquet of pink flowers and the card said, “Pink is your new signature color.”  And every time there was a pink ribbon I was all over it.  What it means to me is that I’m not forgotten.  The HUGE October Pinkness makes me remember that paying it forward is my new job now that I’ve survived the tough part.  It reminds me that it’ll never be over and I need to keep up my self-exams and keep true to my regular appointments.  And it means that there are a lot of people pulling for me and my sisters.  It also means that Komen has GREAT marketing people.

If I could change anything about the breast cancer movement it would be to include other types of cancer.  Gavin [Kathi’s husband] is a melanoma survivor and he always jokes that they don’t throw races or rose petals at his feet, they just throw him a bottle of sunscreen and say, “Hey dumbass, put this on!”  It’s never over for us, pink reminds us of that.  I think that depending on who you are depends on how you react to it.

Erik:  Kathi, you hit the key point about paying it forward.  It’s the obligation of the cured.  Y’all being big Dallas Cowboys fans, what do you think of the NFL’s Pink Blitz?  Do you think the message reaches the right people or is it clever marketing?  Do you see there one day being a “colorless” cancer movement?

Kathi:  I like the NFL Pink blitz.  If it makes just one woman or man go get an exam because it’s top of mind then its worth it.  But, it’s clever marketing as well, I don’t fault them for that.  Interesting concept, the “colorless” cancer movement.  I don’t know.

Carrie C:  I wear pink because it compliments my skin tone.  I am a two time breast cancer chick and I’ve had a bi-lateral mastectomy with reconstruction.  I, too, endured staph infections, multiple surgeries and incredible pain with the tissue expanders.  However, I’m through all of that and live a pretty awesome life after cancer.  I don’t give any thought to October being a special month or what color it is.  I could care less at this point.  I know I can’t control what cancer cells may or may not be lurking in my body so I pay attention to what really matters in my life: my daughter, my family, my friends, the world around me and myself.  I don’t get caught up in all the Pink madness as it’s just a color.  I find it interesting other cancers sometimes express hostility toward those of us with breast cancer because we have it “easy”.  It hurts to read and see that because no one I know had it easy but I can’t control their ignorance.  I can only continue to live a life filled with hope, adventure and love sans my “real” breasts.  At the end of the day, they are just fat and tissue that tried to kill me so it’s fine with me they are gone.  I am not my breasts and no one who really love me cares if I have them or not.

Erik:  Can you expand on the perception that breast cancer is an “easy”, “good,” or “popular” cancer to get?  Because as Stacey & Carrie C. have shown, it’s not easy.

Carrie C.  I hear it quite often.  We are the privileged few who get the “popular” cancer.  In other words, our cancer has the most “press”.  Yep, someone a long time ago decided to slap a pink ribbon on our boobs and market the hell out of pink and cancer.  The pink wave just grows and grows. Others resent the attention our cancer is given and have no issue saying it either in writing or to our face.  It happens to me.  However, the research that has occurred in the breast cancer arena due to all the money and press breast cancer receives is DIRECTLY responsible for the advances in medicine and research for many other cancers.  We do not live in a vacuum.  Cancer is cancer.  It may affect different parts of the body but ALL of it will kill you if you ignore it.

Stacey:  Has anyone else noticed how other breast cancer survivors can be judgmental too?  I have been told that I shouldn’t have had a bilateral mastectomy because I “just” had DCIS, although when the pathology came back from the “unaffected” breast, they detected hypertrophy there, which, as you all know, are early cellular cancerous changes.  My oncologist said that if I hadn’t had a bilateral, I would have been back in a few years, and it could have metastasized by then.

Some of the worst criticism I have faced has been from my “sisters” in cancer.  There is a lot of one-upmanship: “mine was double negative”, “at least you didn’t need chemo”, “hey…I would kill to be able to take my implants out at night”.  I have heard it all!

Carrie C.:  Yep. I had cancer in one breast, had surgery.  Couple years later it hit the other breast and I opted for the bilateral.  I get the whole DCIS diagnosis.  That was my diagnosis and I’ve been almost bullied by a few breast cancer survivors who “had it worse” than me.  It’s really sad.

Stacey:  That is sad, Carrie.  I am sorry you went through that.  I have never gotten why women can’t just be kind to each other.  Every cancer anyone has is the worst they have ever experienced.  I must have less estrogen than the average woman.  I don’t have room in my life for that garbage.

Erik:  Carrie, I don’t remember you having it easy after the mastectomy.  I remember you telling me about all the issues with the foobs [tissue expanders], and that was after “successful” surgery and treatment.  None of that sounds “easy” to me.

Carrie C.:  Erik, it wasn’t easy.  That’s my point.  I was told by others who have “worse” cancer that mine was the easy kind.

Rica:  I gotta love how other people assume they know why you choose the treatment you did, or what you should have done.

Stacey:  The one girl who is the worst to me is the sister of a dear friend.  I was bringing her meals every week during her chemo when I was diagnosed.  Then all of a sudden, she thought she was my cancer guru.  I can’t unfriend the bitch because I don’t want to hurt my friend, so I hid her [on Facebook].  And every Friday is WEAR PINK DAY at the school where I am a nurse.  I swear to God I want to go topless one Friday.  They would all poop their pants. And maybe I would get fired.  It would stop their damn pink tirade though.

Rica:  I hear you.  The lady who came to clean [my house] decided to tell me I shouldn’t have gotten the surgery, nor the chemo, because there were these berries in the rainforest, and if I only drank their juice, they’d break up and eat the cancer, and then if I added salt, I’d never have had cancer in the first place.  She seriously wanted me to cancel my chemo.

Carrie C.:  The whole point really is we all experience our cancer differently and what choices we make are up to each of us.  No one has the right to belittle us for the path we take on our journey as we fight the cancer beast.

Rica:  You said it, sista!

Carrie C.:  🙂

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