Shall we burn the pink ribbons?

October is breast cancer awareness month. That means time for people to decorate with pink ribbons, and to post obscure things on Facebook that only a chosen few know are symbolic of the fact that they are concerned about breast cancer. On the other hand, I have seen a lot of anger expressed at everything pink-ribbon. The reason is because for some reason those organizations associated with the pink ribbons pretty much ignore the real killer: Metastatic Breast Cancer.

Now I don’t hate pink ribbons myself. I think most of the people who wear them or display them aren’t donating money anyway. I suspect there isn’t really a terrible lot of thought behind those ribbons either way. But to me, when I see a pink ribbon, it is just kind of like a little hug. It’s not somebody supporting a specific breast cancer non-profit. It’s just a little tiny “I care.” At least that’s how it feels to me.

I understand the anger too, and I understand it because in the course of my life I have come to see anger as rarely a thing in itself, but rather something produced by deeper emotions. Fear. Grief. And believe me, there is a ton of each to go around here.

Having just finished breast cancer treatment, I find I have a kind of a generalized level of anxiety. When you are fighting the battle, you are busy. You are doing something. But then it’s over. Oh, I take a teeny tiny pill every day. And I can’t tell you how much I love that little pill. I fawn over it. I pet it before I pop it in my mouth. It is my friend, my beloved, my warrior. Sometimes I worry because it is so tiny, though. I mean, how could that teeny tiny pill have enough of anything to get from my stomach through the rest of my body to prevent this cancer from coming back? Not to mention, it is so small I can’t feel it going down, so I worry that somehow it didn’t. It got lost.

I also understand people who don’t want to look at the harsher realities of breast cancer. I feel that way myself sometimes. Give me a big puffy pink ribbon to hide behind! Having become part of the breast cancer community myself, however, I have found no hiding. I have seen friends devastated by pain. I have seen them die. I hesitate to say this, because I don’t want anybody ever to be afraid of upsetting me about these things. I am there with you, my sisters. I hold you in my heart and wrap my arms around you, and if I am bothered it is because I feel so helpless that there is not more that I can do. But honestly, I am shaken. I am super skilled at keeping my feelings underground, but there is a little bit of them that keeps peeking out yelling, “Terrified! Terrified!”

Now for me, at this point in time, the sensible thing is to continue fighting the battle, even if it is not through chemotherapy and radiation. There is nutrition. There is exercise. There is positive thinking. There is prayer. At this moment, just weeks after my final treatment, I am suffering from an anxiety induced paralysis, which is absolutely the dumbest thing in the world. You have heard there is nothing to fear but fear itself. When you give into fear you are more likely to bring what you fear upon you. You hear that, Sharon? Now get your butt in gear and get moving! Fight! 

But back to the pink ribbons. What the pink ribbon campaigns seem to focus on is the early stages of breast cancer: prevention and treatment. And you can’t fault that, really. If you catch breast cancer in the early stages it is far, far less likely to ever become Metastatic Breast Cancer. Following are survival rates provided by the American Cancer Society.

  • The 5-year relative survival rate for women with stage 0 or stage I breast cancer is close to 100%.
  • For women with stage II breast cancer, the 5-year relative survival rate is about 93%.
  • The 5-year relative survival rate for stage III breast cancers is about 72%. But often, women with these breast cancers can be successfully treated.
  • Breast cancers that have spread to other parts of the body are more difficult to treat and tend to have a poorer outlook. Metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%. Still, there are often many treatment options available for women with this stage of breast cancer.

So, yes, there is a place for those working to catch cancer at Stage 1! Prevention is the very best cure.

But how about the rest of us? I actually had my mammograms on the currently approved two-year schedule. In 2014 my mammogram was clear. By 2016 I had Stage IIIC breast cancer. Not all cancers are easily detected on mammograms. I had invasive lobular carcinoma. Lobular refers to where the cancer grows, which is in the lobules of the breast, the place where the breastmilk is made. The other kind of breast cancer is ductal, which shows up in the milk ducts. But the other difference is that lobular breast cancer doesn’t grow in clumps. It grows in rows of cells, which can be harder to detect. You can’t feel it in a breast exam, and you can’t always see it. Even after a mammogram, ultrasound, and biopsy, I was still tentatively diagnosed at Stage I, because they were not able to visualize the full size of the tumor with any of these. An MRI revealed it as much larger than they had thought and I was moved to Stage II. During surgery, my doctor removed 11 lymph glands. Some she thought looked suspicious, but many she was positive were clear based on their appearance. But it turned out that every single lymph node had cancer in it. That sneak attack cancer, growing unseen in rows of cells.

So there we are. All the breast self exams and mammograms aren’t necessarily going to protect you from reaching an advanced stage of breast cancer. And then what?

You have the treatments, you have the PET scans. It seems you are clear. But those little rows of cells might still be there, hiding beyond where they can be seen. If they are, and the cancer reoccurs after treatment, it doesn’t come back in the breast. It comes back somewhere else: commonly the lungs, the liver, the brain, the bones. This is Stage IV, Metastatic Breast Cancer. Metastatic means that the cancer has traveled beyond its initial area of appearance and has take up residence in other parts of your body. It is still breast cancer, only it’s not in the breast anymore. If you have ever heard a cancer patient talking about “mets” showing up in their scans, that is short for metastases, or cancer that has metastasized, the noun form of the verb. Cancer in the breast can’t kill you. It is not, in itself, painful. But let that cancer loose in your body, invading necessary organs, and it can. And does. Painfully. At this point, I think the world is well enough aware of the need for self exams and mammograms, and the treatments for early stage breast cancer are obviously pretty good in order for there to be a 99-100 percent survival rate. So now, it is true, the world needs to stop focusing on the pink ribbons and start focusing on the devastation of Stage IV breast cancer.

If you want to help stop people from dying from Stage IV breast cancer, check out these organizations, suggested by my friend Nanea Hoffman, breast cancer survivor and extraordinary human being: http://metup.org or http://metavivor.org or https://thecancercouch.com.

If you have read this far, there is one thing I know. You care. So whether you display a pink ribbon or not, I just want to thank you. In the scary parts of life, it really does help to know that you are not alone.

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