ysc seattle

It’s Not the Same

Yesterday I spent the day manning the door at a wine-tasting representing 16 different local wineries. Every year, this  event chooses a different charity to which the proceeds are donated. This year, the beneficiary was the Seattle affiliate of the Young Survival Coalition, which supports pre-menopausal women with breast cancer.

Most people, as they came through the door, were thrilled to learn that the proceeds of the event would benefit @YSCSeattle. One woman, however, was not.  She took exception to the fact that this charity focused on the needs of young women. “It’s all the same!” she insisted. I started to launch into the standard spiel, when she fixed a look on me that clearly said she would not hear more  on the issue, and any further discussion was unwelcome. I let her pass with a smile, and turned my attention back to the door.

Since she wouldn’t hear me then, ya’ll get to hear me now.  I’m here to tell you, it’s Not the Same. (Just let me be clear here: these opinions are my own, I am not speaking as an agent of YSC Seattle.)

It’s not the same

Cancer affects everyone differently, and it’s a devastating diagnosis regardless of age. I don’t know exactly why this woman took exception to the age focus of the Young Survival Coalition.  I would have asked her, had I been able to engage in conversation; short of that, I can only guess.  Perhaps she felt it was an issue of ageism, that young women are perceived as more valuable than older women. I can imagine her frustration if that is the case. But understanding how a young woman’s breast cancer is different from an elderly woman’s cancer reveals issues that are much more complex. An elderly woman’s life is just as valuable as a young woman’s life, but the issues they encounter as a result of their cancer are quite different.

We go through a number of different stages through the life cycle, and cancer affects people in each different stage of life differently as well.  A three-year-old diagnosed with breast cancer may relate better to other toddlers with cancer than a group of 30-year-olds or a bunch of 80-year-olds.  Regardless of where we are in the life cycle, we tend to relate better to peers within our own age group who have similar experiences and challenges.

The truth is that the vast majority of the services provided for women with breast cancer focus on elderly women.  Aside from those sponsored by the Young Survival Coalition, I was the youngest by a good 20 to 30 years at most of the cancer related activities in which I have participated. Young women with cancer have different needs, socially and medically.

Lets talk about that for a minute

  • Young women with breast cancer tend to have much more aggressive cancers that are diagnosed at a much later stage, meaning it’s more frequently deadly.
  • Most studies exclude women under 40, meaning those with the more aggressive cancers are not included in much of the breast cancer research.

Well, that’s a little frustrating.

There are other issues as well.  What happens if you are diagnosed with cancer at the height of your career?  When women still have to work twice as hard to even approach equal pay with men, adding a cancer diagnosis significantly impacts your ability to make a living.  And with health insurance tied to your job, that further complicates things.  Sure, there’s FMLA that is supposed to protect your job, but that’s only if you work for a big company. And COBRA extends your coverage if you can manage paying 103% of the full cost, on top of your co-pay and the 20% the insurance doesn’t cover. These rules are there to protect employees, but it doesn’t always work. There are ways around them, and corporations can afford lawyers, employees can’t.

Then there is the whole issue of saving for retirement. We had to empty out our retirement accounts at 40 years old to get through my year of cancer. That means we’re starting over from scratch, zero retirement saved up at this moment.  We’ve already accepted the fact that retirement is just not going to be an option, we’ll just work till we fall over.

Now, imagine the single mom trying to balance a career, raising her children, and cancer in light of all that.

It’s not the same

And it helps to be able to discuss these issues with others who have gone through it as well.

Then there is the sex issue. I’m not so naive as to assume that elderly women don’t have sex.  Considering that I hope to live long enough to be an elderly woman, I’d like to believe there is plenty of good sex involved. I’d also like to think that in my 80s my husband and I will be celebrating our 50th wedding anniversary.  I could be way off here, but I imagine that the impact of a mastectomy on a 50 year old marriage might be a little different than for a woman who just got married, or is planning a wedding, or still looking for the love of her life. I understand that is a huge assumption on my part, but I think it’s one worth considering.

Now let’s talk about fertility.  I don’t know how 80 year old women feel about their fertility, or lack thereof, but 20- or 30-somethings with a rapidly-ticking biological clock tend to think about it quite a bit. To have it suddenly and abruptly threatened or destroyed adds another layer of stress to the young woman facing a breast cancer diagnosis. Once you’ve survived cancer, your dreams have to be rewritten.  Adoption? Sure, for those who are willing to adopt out to a cancer survivor. But don’t forget that cancer has already depleted finances, so the exorbitant fees charged for adoption are even more difficult to overcome. Surrogacy? Also an option, provided you are financially able to preserve the eggs before treatment and pay for the fertility services and the surrogate after treatment.

Most women diagnosed with cancer at an older age have adult children.  That is a completely different situation from a woman who is diagnosed with breast cancer while she is still breast feeding her baby, or worse, while she is still pregnant. Imagine having to decide whether to proceed with chemo during pregnancy, or postpone it until the baby is born.

My breast cancer negatively impacted my daughter’s health. We had to emergency wean her for the mastectomy, and she lost two pounds; that’s a huge loss for an infant. It was several months before she was really thriving again. After the mastectomy, I couldn’t pick her up either, compounding my feelings of guilt while my baby was failing to thrive. What got me through this difficult time with my sanity intact? Being able to connect with other young women who had been through what I was going through. Being able to see that it is possible to raise bright and vibrant children while going through this dark experience made all the difference for me.

A room full of elderly women with breast cancer would never have been able to help me get through this in the way that the young survivors did.

It’s Not the Same.

And I’ll bet an 80 year old woman would not be very comfortable sitting in our support group either.  She might have trouble finding someone with whom she could relate as well.  The Young Survival Coalition doesn’t focus on age out of disrespect for elderly women, in fact reaching old age is one of our goals. We focus on age because young women are an underserved demographic of breast cancer survivors, and this is a way to get them some sorely needed support.

You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

 

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