I have a confession to make…

I have a confession to make. Before I was diagnosed with metastatic breast cancer, I would hear that someone in my community had died from breast cancer and I would think: “It’s too bad they didn’t  get annual mammograms. It’s too bad they ignored early detection practices. It’s too bad they died, but it’s really their own fault.”

I was diagnosed in 1992 with early stage cancer–stage 0 or DCIS–the earliest you can have. I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. I never embraced the pink survivor label because I never felt I had gone through that much–no chemo, no radiation, just some disfiguring surgery followed by a saline implant, which was supposed to simulate a real breast.

I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of  annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me.

Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a failproof screening test. My education in breast cancer began the day I was diagnosed with mets and I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone.

The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with “the cure”.

When life throws us some crisis, most people like to see it as a challenge and find meaning in their travails. We are by nature optimists, so if you lose your job, you will find another and maybe a better one or in a different field than you had worked previously and never would have explored without the rude shove out the door. The same happens with disease. Testimonials abound from some that they are better people than they would have been without the heart attack, the cancer, the terrible car accident.  They realized their life had the wrong priorities, that they weren’t appreciating every single day. And people do change. They meditate, they volunteer, they mend bad relationships. While I acknowledge that can happen, I never want to characterize cancer as a gift. I don’t think I need to endure treatments and side effects the rest of my life just to be a better person.

But I’d like to believe that I have stage IV metastatic breast cancer for a reason:  to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the “guilt” myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.

October 13 is Metastatic Breast Cancer Awareness Day–one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring.

I have a confession to make. I have metastatic breast cancer and 40,000 women and men dying every year from breast cancer is unacceptable. It’s too bad that the breast cancer message has been skewed. It’s too bad that few know that an estimated 25-30% of survivors will become metastatic. It’s too bad that there is not enough money going to co-ordinated, effective research on metastases.

It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out. What will you be doing?

Ginny

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12 Responses to I have a confession to make…

  1. Amy says:

    On top of the 25 to 30% who become metastatic are the 5 to 10% (or maybe even 15%) who are metastatic at diagnosis–despite “doing everything right.” I agree that the “early detection = cure” meme needs to be countered. Right now the main thing that early detection does is extend the amount of time you know you have cancer. I can’t really think of that as a benefit.

  2. Colleen Hofmeister says:

    Amen, Sister Friend! Diagnosed AT Stage IV after years of religious mammograms AND sonograms I said to myself, “Huh? But I did what they told me to do…I’m supposed to get some yucky treatment and then live the rest of my life as a “Survivor”! What’s with this incurable angle?” There are FAR too many of us living with metastatic breast cancer and the message has, indeed, been scewed. Let’s all bond together to get the REAL message out there…breast cancer cannot be tied into pretty pink ribbons, it kills, and it is killing us!

  3. katherinembc says:

    Reblogged this on ihatebreastcancer and commented:
    MBCN’s Ginny had 17 years of regular mammograms following her DCIS diagnosis. She writes: ” My education in breast cancer began the day I was diagnosed with mets and I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives…and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone.”
    Read this important post!

  4. Excellent post! I am sorry for what you have to endure. I was diagnosed with breast cancer in 2008. I remember thinking that if I had to have cancer than this was the one to get. After all, breast cancer is trendy. Look at all the pink!

    Boy was I wrong!I now live my life with the shadow of cancer’s return. So, I no longer Think PInk. And, like you, I do not see cancer as a gift –in fact, I wrote my own blog post entitled, “No, Cancer is Not a Gift”. I try to make each day count and support others with this disease as best I can. (Flower Power is my org. and we provide free gardens maintenance and new gardens to people facing cancer in Southern Jersey).

    And, though I usually avert my eyes during the month of October, I plan on observing October 13th and spreading the message that breast cancer kills and we must do more to end this dreaded disease.

  5. Susan says:

    I, too, plan to celebrate Pinktober – all month long – because October is my birth month!!!

    • R Anuradha says:

      I too am an October born and an metastatic breast cancer patient from India. I like the idea to commemorate and remember the problem and trying find ways to solve it for a whole month. At home we don’t have any celebration or commemoration– traditional or modern– that runs for a whole month. Wish best for Pinktober to all, in advance.

  6. MBCNbuzz says:

    Hi all
    thanks for your great comments and Susan,my sympathies to you on a pinktober birthday!

  7. Susan says:

    I also was naive when I first was diagnosed with Stage II and did a lumpectomy, chemo and radiation. Two biopsies after and a year and a half after finishing my treatment I had a recurrence. I had a bilateral mastectomy with reconstruction that took years to correct because I had a radiated breast. But I was spared of mets at the time although I definitely got the message- breast cancer can come back. But when my dearest friend Li had her recurrence it was mets. As she lay sick in her bed dying, we managed to joke about how naive we were about breast cancer when we went through our primary chemo together. While the wrong message has been made we don’t want to lose the generous spirit of those donations that belong with organizations like the NBCC to end breast cancer. We must make sure though that we also find out how to reverse mets once it has happened, instead of coming up with meds that give 2.2 more months of survival. When we have a vaccine, prevents mets, and reverse mets, then we will have something to celebrate.

  8. Sue Diehl says:

    I too had stage 1 but never bought into the whole”you’re in remission” crap. I say “I don’t have cancer right now as far as I know” Someday—when someone is diagnosed with cancer—they will treat ALL cancers as chronic conditions. Once your body knows the formula for making cancer—it NEVER forgets.

  9. Angela says:

    Ginny,
    Thank you for your teachings. You have answered many of my questions that had not been answered yet. Please keep speaking from your heart as loud as you can. You offer so much to the world with your honesty heart.
    Angela

  10. alamik says:

    I agree with all your posts. I am not a fan of the pink and fluffy movement. But I’m confused as to some of this website’s content since this the MBCN is sponsored by the Komen foundation, the very group that spends almost as much on fundraising as they do on research. I didn’t realize that MBCN had any ties to them until a few minutes ago.

  11. […] diagnosed in 1992 with early stage cancer–Stage 0 or DCIS–the earliest you can have,” Ginny wrote in this blog post. ” I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I […]

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