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The invisible breast cancer patient

5/9/2016

15 Comments

 
Picture
Taken by slip'n'shoot; used by Creative Commons license
Neither young nor old, she easily blends into a crowd.  At first glance, her soft graying hair would seem to place her in the senior citizen category, but a closer look at her face reveals the absence of fine lines and wrinkles that should go with the hair.

When you listen to her talk, you hear her proudly talk about teenagers … not grandchildren, but her own children.  Motherhood came late for her … early 40s … yet she doesn’t generate the same sympathy as someone a decade younger with the same age children.

Her parents are no longer able to help care for either her or her children.  In fact, this woman is a member of the sandwich generation in which she not only cares for her teenagers, but also cares for her aging parents as they navigate the uncertain path of dementia and other age-related issues.  

Like many who are stricken with metastatic breast cancer, she was forced to medically retire from a career she spent decades building.  When she laments that loss, there are those who are unaware enough to say, “At least you had time to build a career.” 

As doctors try to figure out how to slow down the disease ravaging her body, they continue to check for any mutation that could give clues as to why repeated treatments are failing.  Test after test after test comes back negative for mutations.  She does not qualify for clinical trials due to either too many prior treatments or due to the fact that she doesn’t have the “x-factor” the clinical trial is targeting.  In short, her garden-variety, very average, hormone positive breast cancer isn’t “interesting enough” to warrant further study from a clinical viewpoint. 

You would never be able to tell this woman is sick simply by looking at her.  She has lots of energy, but her life is slipping away.  She can tell the differences in her body from one year to the next and deep down, she knows, barring a breakthrough treatment, that her time is limited.  

Yet, she is seldom talked about or seldom seen.  When one looks closely at stock photos for breast cancer awareness fundraisers, she’s the invisible one in the crowd.  If she’s there, she won’t be flashing a brilliant smile of survival, but will be standing off to the side, wincing at the pain of it all.  She wonders how women older than her feel … those already in their 60s and 70s … and the seeming lack of awareness that the average age of diagnosis of breast cancer is 61 and the average age of death to metastatic breast cancer is 68.  This means that half of the women who die of metastatic breast cancer are older than 68 years old ... but too often, the only ones talked about are those under age 50.  Even at events that feature those with metastatic breast cancer, her presence is unnoticed.  The focus continues to be on those younger than her.

The invisible cancer patient’s life has value, even if she is not seen or heard.  She has little to no social media presence and lives a quiet life out of the limelight.  Deep inside, though, she feels herself disappearing, day by day, until one day, she is but a memory and an epitaph on a tombstone that reflects the rays of the setting sun.  If you listen closely though, you’ll hear her voice in the wind saying, “I made a difference to those I loved and they made a difference to me.”

(The above is a compilation of stories of multiple women who don't fit the young patient model and their frustration with breast cancer agencies using "youth" to generate sympathy for donations.  Their impressions are that if a breast cancer patient is older than 50, it's assumed she's lived a full life and that she should be grateful for living that long.  Women in their sixties and seventies truly feel a lack of sympathy from the general public that appears to give a general shrug of apathy for their diagnoses.)
15 Comments
Kate Anderson
5/9/2016 04:47:41 pm

This is for me - at last! I was diagnosed at 63 and I'm 65 now. I grieve for those who are younger and have children, but I never married and have no children. I still matter!
(And I said all that without using filthy language.)

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iwantmorethanapinkribbon
5/11/2016 01:16:06 pm

Yes, Kate, you do matter! I always look forward to hearing from you. I love your little stories and the tiny pictures you give of your life. Please keep them coming. <3

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Nancy's Point link
5/10/2016 06:38:07 am

Thought-provoking read. Cancer at any age is horrible. I will admit, sometimes it seems others feel my mom's cancer wasn't as bad a deal since she was "old" - in her 70's. Sometimes I tell myself, at least my kids were older when I was diagnosed. From a younger patient's perspective, both are sort of true, but again, cancer at any age is horrible. We need unity. We need to stick together in the shitstorm that is cancer. We just do. No one should ever feel invisible. This is one reason I wrote my "Walls We Build in Cancer Land" post. http://nancyspoint.com/walls-we-build-in-cancer-land/

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iwantmorethanapinkribbon
5/11/2016 01:17:27 pm

Quite succinctly? Cancer sucks. Thanks for your post ... I did read your post on walls. Walls are so very real in Cancer Land. I wish they weren't, but they are. Sigh.

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Michele Schellberg
5/10/2016 11:08:32 am

I resemble that article.Yes, I raised my child, had the career until 6 months after the diagnosis when my employer suddenly had a reduction of force that affected my group. FMLA was over thus I just had to accept what happened and move on. Cancer is cancer no matter what age you are and I think its a crying shame that the walls exist. As I approach my 61st birthday I've made a vow to myself that there be no pity party. I am going to celebrate my life and thank god for another day.

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iwantmorethanapinkribbon
5/11/2016 01:18:50 pm

Happy birthday, Michele! I think a lot of women fall into the same situation where they end up being discriminated against not only because of disease, but because of their age with that disease. I hope you have a grand day.

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Sharon Armstrong
5/11/2016 08:42:30 am

I am 56, 2.5 years into my de novo stage IV diagnosis. EVERY. SINGLE. LIFE. lost to this disease matters to me. Men, women, young, old, in between, every single one. No life matters more or less. What matters is coming together to demand more research for the only breast cancer that KILLS US. ALL of us who are given this death sentence. Metastatic breast cancer doesn't care how many kids you have or don't, how old or young you are, what your gender, race, religion or sexual orientation is, it's an equal opportunity killer. I will not be invisible. I will go on kicking and screaming until a metastatic diagnosis means a good quality of life, managed as a chronic disease. Division will not keep us from dying. We need to stand up together, ALL OF US to make research a priority.

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iwantmorethanapinkribbon
5/11/2016 01:21:41 pm

Sharon, I couldn't agree more. It's simply unfortunate that the ever present "youth and sex sells" has permeated our non-profits, including research foundations for metastatic breast cancer. I wonder what it would take for all the walls to come tumbling down?

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Denise Paulsen
5/14/2016 08:12:31 pm

When I read these tremendously well worded thoughts that slay, and there are a few other Stage IV blogs that I follow, it fills me with absolute rage that these beautiful wonderful women will be helplessly taken by this particularly common nowadays disease AND WE'RE NOT TALKING ABOUT THIS TRAGEDY EVERY BLEEPN DAY!!!! so that everybody knows the amount of suffering these women go through and begging for a cure or at the very least a balm to soothe this as a chronic illness to be managed for years to come. It blows my tiny mind we hear so little about THIS KILLER but if LITERALLY ONE PERSON contracts the Ebola virus in the whole of the USA the media swarms this story endlessly until we're all abuzz. And don't forget for a single second how many people are simply devastated, Vickie, by what's happening to your precious life. You reach so many people with your powerful voice. I may not pray for you. That's not my bag. But I weep for you. My sorrow is boundless. xo

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iwantmorethanapinkribbon
5/16/2016 08:33:59 am

Thank you, Denise, for your words of encouragement. Some would say that the current Cancer Moonshot (in the US) is a focus on cancer, but most would say, with a cynical voice, that it's mere lip service and a political maneuver. No, we're not outraged enough and in many ways, we're all invisible when it comes to dealing with the tragic consequences of metastatic disease.

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Caroline link
5/16/2016 07:14:52 am

At first reading your post I was a bit confused. I never thought of breast cancer as the young woman's disease. But then I realized that what you are saying is too true. Youth and beauty are used to point out the 'injustice' that that these 'poor young women' are stricken too soon in their lives with breast cancer to sweeten up the pot for money to be thrown at the organizations by donors. And a pink ribbon makes it more 'girly'. And youth and beauty look better in a picture.

The youth and beauty hides the truth of the disease that most women with breast cancer .are diagnosed later in life - 60's and 70's - and they should not be ignored. We cannot let them be lost in the crowd. They deserve as much focus as any other person. The lack of support systems from their families and friends should not let them slide into invisibleness. They should not slip away quietly and alone.

And research dollars and focus should go more to the typical breast cancer patient than just the young ones. These problems are more societal than anything else. But change is needed.

Reply
iwantmorethanapinkribbon
5/16/2016 08:35:37 am

Thank you, Caroline, for your well-phrased comments. It's been a while since I thought about the pink ribbon as a "girly" and "youthful" statement, but you've nailed it with that reality. Pastel pink used to represent the birth of a baby girl, but now? Whenever I see that color, I call it "breast cancer pink."

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Kate Anderson
5/16/2016 10:32:23 am

You might find this interesting:
Ladies' Home Journal article in June 1918 said, "The generally accepted rule is pink for the boys, and blue for the girls. The reason is that pink, being a more decided and stronger color, is more suitable for the boy, while blue, which is more delicate and dainty, is prettier for the girl." Other sources said blue was flattering for blonds, pink for brunettes; or blue was for blue-eyed babies, pink for brown-eyed babies, according to Paoletti.

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bhopal cancer hospitals link
5/30/2016 03:40:33 am

I would also like to share an amazing site with you guys if you are looking for a day care for your kids.

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Lita Eitner-Engand
7/25/2016 09:15:30 pm

What really sucks about all this is that - according to Social Security - most women without any disease will leave to be 86+ years old! So if you come down with metastatic breast cancer (that has spread to the bones, like mine has) you probably won't live past 5 years. I was diagnosed at age 57, so I'll likely be gone by age 62. Do the math, and that's almost 25 years that I WON'T HAVE. Women at ANY age count. It's not right to pay so much attention to younger women and say, "Well, that's just too bad for you," to women over 50. I know dozens of older women in their late 70s and 80s and they are vital, active women who still drive, volunteer and contribute to their communities and families. You shouldn't be written off if you come down with cancer in your 50s or beyond.

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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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