Monday, February 6, 2012

Post-Komen Thoughts From a Breast Cancer Survivor

Sorry if I seem to be ranting on and on about this, but as someone who so recently had breast cancer, I guess it just hit a nerve.

I was one of the lucky ones.    One of the first things I learned following my breast cancer diagnosis was that there are "good" breast cancers and "bad" breast cancers.

Prior to last September when I was diagnosed, I had only thought that there was "breast cancer," I had no idea that there are different types and some can be worse than others.

I had a "bad" type.   I was diagnosed with an invasive lobular carcinoma, an aggressive type of breast cancer that runs the risk of metastasizing easily.     I also found out that the type of breast cancer I had would never form a lump.

I never knew that you could have breast cancer and never had a lump.   With all the "breast cancer awareness" out there, that fact there are many kinds of breast cancers that don't form lumps never seems to be discussed.

I was lucky in that I'm an upper middle class woman with decent health insurance (decent in that it pays for screenings), so being the good Girl Scout that I am, I always went in annually for my mammograms.

It was that dutiful behavior that probably saved my life.

Although I had a "bad" type of breast cancer, the main tumor that they found was less than 1 centimeter across.   There where other micro tumors that were less than 2 millimeters spread throughout the breast, but I managed to catch my cancer at an extremely early stage.  Had it gone even one more year, my prognosis could have been completely different, and I would have needed much more intensive treatments.

After my diagnosis, I reached out to breast cancer survivors.  What amazed me despite all the money pouring into breast cancer charities, we haven't gotten all that far treatment wise in the last 20 years.

Here's the basic outline of what happens if you get breast cancer.  First you have surgery, either a lumpectomy or a mastectomy and you may need to have lymph nodes removed (I did).   Then you will definitely have to have radiation, five days a week, for five to six weeks.   Depending on how your cancer progressed, you may need chemotherapy which usually comes before the radiation.

Now, you speak with women who had breast cancer a year ago, or 20 years ago, and you know what?   They tell the same stories.   The treatment of the woman who had breast cancer 20 years ago, pretty much mirrors the treatment of the woman who had breast cancer last year.

We may have gotten to the point that we're finding cancer earlier and earlier but the treatments haven't progressed at all.

And, that's what I think was the Susan G. Komen Foundation's biggest failing.   With all the money they collected, they couldn't find any better options for curing breast cancer than surgery, radiation and chemotherapy??? 

Why is it that a daughter being diagnosed with breast cancer today is essentially going through the exact same treatment regimen that her mother did 20 years ago?

Up until the night before my surgery, we did not know if I needed a lumpectomy or mastectomy.    As I contemplated losing my breast all I could think about was how barbaric it all is.   That we have to rip off women's breasts to save there lives.  This is, after all, the 21st century and this is the best we can do?

BTW, I don't know if you've viewed this brave woman's story yet, but it's worth at least listening too if you're too squeamish to watch:



The entire time I watched this video I just kept thinking, "with all the walks and pink ribbons slapped on useless products, why does this woman have to go through this."

Why do women still have to worry about losing their hair due to chemotherapy?   You mean that after all the money that's been collected, they haven't been able to find any better drugs?  

And, for smaller cancers, like mine, why do I even have to undergo surgery?  Why is it that we're not at the point were an injection could have done the trick?

And, why six weeks of radiation, five days a week?  It's exhausting, and emotionally draining to have to drag yourself to a hospital five days a week for that long to get treatments.   Why hasn't the technology been improved to the point were breast cancer patients only need to go 3 days a week for 3 weeks?  Is that so much to ask?

Yes, the Susan G. Komen/Planned Parenthood revealed some failings in the breast cancer charity world, but the real failings are that women diagnosed with breast cancer are no better off today, treatment wise, then they were 20 years ago. 

I was one of the lucky ones.  I only needed a lumpectomy and radiation.   No chemo for me.   I'm also lucky because I was able to get annual screenings so that my cancer was found early.

What about the women who don't have ready access to early screenings?   What about the women who don't have insurance and for whom getting annual mammograms is cost prohibitive?  

I was also lucky because I had insurance to pay for the bulk of my treatments.  But even with my insurance, I still have over $8,000 in medical bills in co-pays and other costs my insurance won't pay.  

I can swing this $8,000 in unintended costs.  I don't like it.  I'm not happy about it, and it will mean delaying some big ticket purchases (like the new car my husband needs), but what about the families who couldn't cover $8,000 in unexpected medical bills due to someone in the family getting breast cancer.

Or worse, what if they don't have insurance?   According to the bills I got, the hospital alone charged over $35,000 for my lumpectomy.  My breast surgeon charged over $26,000.    I didn't even bother to total up all the other costs, but it probably easily exceeded $75,000.   

This is Susan G. Komen's real failure.   Women shouldn't have to worry about losing their breasts, undergoing weeks and weeks of exhausting treatments, losing their hair and getting strapped with huge medical bills because they were diagnosed with breast cancer in the 21st century.

11 comments:

  1. I have always wondered where all the money goes.. they raise an enormous amount of money.

    I did read one article that said some have had success with injecting huge amounts of vitamin C into the body.. but that they have struggled to get noticed or research funds.

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  2. The most important thing to notice disease to be cured its

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  3. Thank you for posting this video. I have lost friends to breast cancer, have many friends who are survivors and most recently, my mom was diagnosed. I have been a long-time supporter of Komen and have done the Hartford Race for the Cure twice and was planning on participating this spring. I won't be doing that now, and I have found nothing that better expresses my frustration with the politics surrounding women's health issues, than this woman's brave statement. I linked the video to my Facebook page and my friends have picked it up and spread it everywhere. (Love your blog, btw, and best wishes to you in your recovery).

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  4. Awesome blog about cancer disease and about cure.good information for cancer disease and women's health issues.thanks for sharing valuable information.

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  5. This list of notable breast cancer patients includes people who made significant contributions to their respective fields and who were diagnosed with breast .

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  6. hi,
    Breast cancer is a type of cancer originating from breast tissue, most commonly from the inner lining of milk ducts or the lobules that supply the ducts with milk.

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  7. Its like you read my mind! You seem to know so much about this, like you wrote the book in it or something.

    I think that you can do with some pics to drive the message home
    a bit, but other than that, this is excellent blog. A great read.
    I will certainly be back.

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