Stomp Out Breast Cancer – Live from Stage IV

Monday, March 2, Beth Fairchild asked metastatic breast cancer patients (particularly us young ones) to speak up, SHOUT OUT, get on social media and let everyone know we are here. Help us Stomp Out Breast Cancer.

The hashtags for the effort are: #bckills #metsmonday #dontignorestageiv #30percent #metavivor #metathriver

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I was a tad bit surprised when I found out how few knew about metastatic breast cancer when I was diagnosed. People asked my friends “didn’t I catch it early enough?” Many people laid blame on me, the person with stage IV cancer, for not having done something correct in my treatment. I should have been cured right? Breast cancer is supposed to be curable… or at least that is what people seem to think.

I found the lump at 30 years old. It was the second lump I had had checked (the first one was a benign cyst). Breast cancer does not run in my family. My aunt had it on my mom’s side, and my grandma had it on my dad’s side. I come from a very large extended family – we are not even meeting the 1 in 8 women at this rate. I don’t have the BRCA1 or BRCA2 mutations. I don’t know why I got breast cancer.

I caught it at Stage IIB! That is early for needing to be able to feel it with your fingers. The tumor was 2.5 cm wide. They found 1 lymph node that had a tumor in it, this lymph node was removed during my mastectomy.

I had a bilateral mastectomy, 8 doses of chemo over 16 weeks. I had radiation from shoulder to tummy, sternum to armpit. I took Tamoxifen everyday. I did what I was supposed to do.

30% of early stage breast cancer patients go on to get metastatic breast cancer. How are some people cured and some people not? No one really knows at this point. It is a crapshoot, a gamble. A gamble in which I didn’t quite get the winning hand.

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Everyone diagnosed with breast cancer lives in fear knowing that they could find out that they are metastatic. 5 years is the big milestone, but many women find out they are metastatic 10+ years after their initial diagnosis. It is a shadow that follows you around. Every ache and cough has to be scanned – checked – you have to make sure. We did many of those types of scans. Many clean scans while cancer was hiding away in the cells of my body.

Major breast cancer organizations donate 2-7% of their funds to metastatic breast cancer research. That is what this ruckus is all about. It isn’t enough. Without a cure for metastatic breast cancer, there isn’t a cure at all. The more we ask, the more we are heard.

Yes, men and women in all stages need support (yes, men get breast cancer too). Women need to get in for mammograms, the earlier you get in tends to lower your risk of having a recurrence – but breast cancer caught early does not guarantee you won’t get metastatic breast cancer. Again, there is no cure for stage IV breast cancer. Not 100% of breast cancer funds needs to go toward metastatic research, but why not a little more? If we don’t find a cure for metastatic breast cancer, we don’t have a cure for breast cancer. Metavivor.org recommends 30% of fund for 30% of men and women.

The rest of my life will consist of treatment, monitoring that treatment for progress of my cancer, if it is doing well I stay on it. When the cancer spreads I change treatment. Scan. Treat. Repeat.

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If you go by statistics, the average is 3 years of life after a metastatic diagnosis. We found the metastases in my lungs 1 1/2 years ago (they couldn’t biopsy the ones in my lungs, so we waited…). I wasn’t officially diagnosed with stage IV breast cancer until October 2013 – by then it had spread throughout my spine, clavicle, ribs, lymph nodes in my chest and we just found out it was even hiding in my ovaries that we removed in November. So how much time do I have left? It is a question I ask myself all of the time.

I am 35 years old. I am hoping money toward metastatic research extends my life beyond the statistics.I want to stay alive beyond the statistics. I plan on sticking my foot in every trial that makes sense. I will be the guinea pig, just please help fund the research that keeps me alive.

So please, share, help get the message out, and much love to breast cancer thrivers in all shapes, stages and sizes. Let’s support everyone, but let’s shift some funding, let’s focus on a real cure. A cure for metastatic cancer and research to prevent metastatic cancer from happening.

Places that fund only metastatic research:

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Author: Mandi

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  • Emily Helck

    <3 So important, thank you for sharing this. Sending all the best.

  • Barbara Benedict

    Yes, spread the funding, find a cure!

    • Love you mom. 🙂

      • Barbara Benedict

        Love you too!

  • Mary

    Yes! Thanks for bringing this up. What is the best way of shouting which could change the situation??

    • Share the statistics! Share organizations that do research for metastatic disease or fund metastatic disease. It is alarming how many people still think breast cancer is curable.

  • lany

    It is unbelievable that people would blame you or anyone else in your situation for “not catching it early” or not doing enough. It is due to their own needs, their need to feel that they have control over their lives (“this would never happen to me..” “I look after myself, if I get cancer I’ll catch it early”) – nope. Sometimes we have no control and for some things there is nobody to blame. Neither doctors, nor the patient, nor the diet, nor the air quality or whatever, things just happen and this is hard for people to accept.
    I wish you all the best in your recovery after this round of chemo, and a very long life, even longer than your statistic-beating target! 🙂

    • Thank you! People are interesting creatures and yes, I think it is a gut reaction of being able to control and avoid. There are a number of people that seem to think that there is a cure for Stage IV breast cancer too. Someday! I hope!