Instead

Today’s theme is based around the word instead. I cannot fathom why some wrong ideology continues to persist around breast cancer and breast cancer awareness instead of shifting to concepts and vocabulary that is more truthful.

Exercise and nutrition do not prevent cancer any more than they can cure cancer.

Instead . . . exercise and nutrition reduce risk and can improve anyone’s health. This is true for reducing the risk of heart disease, diabetes, cancer, and any number of diseases, but it is not a guarantee.

Don’t tell me I look good, or even worse don’t say that I’m pale, look tired, or must not be feeling well. I realize my summer pale shade will fade to my usual pale, but pale is how I look. I’ve been pale my entire life.

Instead . . . tell me it’s good to see me. It’s very welcoming and removes all assessments of how I look or how I’m feeling. It’s that simple.

Promoting mammograms and early detection as saving lives is not accurate. 30% of early stage breast cancers go on to become metastatic. Mammograms and early detection are not cures. There is no cause and effect relationship between early detection and assured survival. Identifying breast cancer at an early stage is certainly preferable as to when it’s already stage IV. There is enormous value in finding it early. A person has a shot at a normal life. Mammograms are neither prevention nor a cure. They do not catch all breast cancers and they do not catch all the ones that they do at an early stage. Mammograms do not reduce risk. Mammograms are good, yet imperfect, diagnostic tools.

Instead . . . people must be informed so they know the chances of recurrence.

  • 30% of cases will have a recurrence. Forgive the repetition.

One reason metastatic breast cancer, or metastatic cancer of any type, is difficult for people to learn about is it’s scary and no one wants to think it could be them. People who have finished formal treatment want to be done. They use the words cancer free and cured freely. There is no way of knowing how I’d feel if I had been diagnosed at an early stage because it wasn’t my reality, but I think I would have been mortified if someone kept shoving the statistics and signs of MBC in front of my face when I was doing my best to be done with it. And shoving is what I imagine it would feel like. Maybe it’s a similar feeling to how I feel when the barrage of pink comes my way almost every blasted day in October. I want it to go away and leave me alone. If I want something pink, I will buy pink flowers or drink Pepto-Bismol.

Instead . . . we all need to be more compassionate and respectful. I include myself in this statement because I can have a tough time understanding how some friends and family just don’t get it.

This idea of otherness rather than togetherness is one reason why there are separate support groups for earlier stage survivors and those with stage IV. Out of sight, out of mind. Different conversations. True, yet some of those conversations are worth having together. If not together, there must be a way to provide information about warning signs. Those with earlier stage cancer do not want to think about cancer returning or it turning metastatic. They want to believe they are cured. There is no such thing. There is remission. There is hope that it is in a person’s past. Hope is not to be underestimated. For many, it will be in the past. It won’t be for that 30%. That’s roughly 1 out of 3 survivors.

Instead . . . people need to be educated so they know what warning signs to look for.

Signs of metastatic breast cancer to other areas may show up as the following symptoms:

  • Brain – Frequent headaches / Vomiting / Dizziness / Impaired intellectual functioning / Mood swings / Balance issues / Fatigue
  • Bone – Bone pain commonly felt in back, arms, ribs, or thighs with no obvious cause.
  • Lymph nodes – Swelling in chest, armpits, or neck areas.
  • Lung – Sharp pains when breathing in / Fatigue
  • Liver – Pain near ribs on right side / Bloating / Weight loss / Changes in appetite / Fatigue

Patients often feel like they need to agree unwaveringly to everything their doctor suggests. They fear they will be labeled as difficult, have less time spent on them, or that they will receive subpar care if they disagree with management. I hope not.

Instead . . . patients must ask questions and be their own best advocates.

Here are some possible statements and questions:

  • I don’t understand. This information contradicts something else I’ve been told. Here is what I’ve heard/read. Can you explain it to me again?
  • What are the risks of this treatment? What are the side effects?
  • Why is this recommended for me? Is there something else to try?
  • Are there clinical trials here or through another clinic/center/hospital?
  • I need (fill in the blank – a hopeful approach, a second opinion, more information, less information, stronger meds, different meds, different communication, etc).
  • I am experiencing (fatigue, neuropathy, lack of appetite, depression, etc.). What can I do to address it?
  • That isn’t what I said/asked. Let me try again.

When someone dies from breast cancer, sometimes the phrase “from breast cancer complications” is used. It seems to be one of many hot button phrases this fall.

Is metastatic disease a complication?

Reporting death as a result of breast cancer complications needs to stop. Many illnesses that can be fatal can be brought on due to low white blood counts because of a weakened immune system from treatments. This includes the flu and pneumonia. Organs like the kidneys, liver, and lungs fail or shut down. Organ failure is not a complication. Metastatic cancer is the only kind of cancer people die from. My opinion is they don’t die from it so much as they are killed by it.

Instead . . . say killed. Metastatic cancer kills.

Breast Cancer Awareness Month gets under my skin more each year. I don’t think I’d mind awareness so much if it had the right drivers.

Pink products do not cure cancer. They do not appropriately fund (or fund at all) research. They do precious little to raise awareness. Awareness should not be tied to pink merchandise with no other messaging than a color. Do I want a glittery pink dog on a t-shirt? I do not. Is a pink mug with some clever slogan going to make my treatment more effective? It is not. What does all this pink do?

People buy these products in the name of awareness and they are unaware that very little goes to research, and that an even smaller slice goes to research for metastatic breast cancer. Do your research and know how your donation to any charity or foundation where you contribute is being used.

Instead . . . when you see pink merchandise, respectfully inquire about where the money is going and how it’s used. Then educate about other alternatives that support research.

Pink isn’t even applicable to me. It’s as if I’m excluded from the very awareness month that should recognize me.

And there it is.

I don’t truly belong because I don’t have breast cancer.

I have metastatic breast cancer.

Many in the MBC community feel royally miffed (including myself) that there isn’t more of a focus on metastatic breast cancer during October, and I think I’ve figured out that perhaps the intention was never to focus on us. We get a day out of the month. This year it was Oct. 13th.

Thanks?

The colors for metastatic breast cancer are green, teal, and pink. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality. Teal symbolizes healing and spirituality. The pink ribbon represents that cancer originated in the breast. I don’t want a ribbon, or a bracelet, or a t-shirt.

Instead . . . I want the money spent on those items to go toward research for more treatment options for metastatic breast cancer. After a quick internet search, I discovered I could buy a pack of 50 pink breast cancer pins ranging between $40 to $50. How many of those pins are out there? You do the math.

Now, consider the mugs, bracelets, t-shirts, and other pink nonsense.

Next, consider what might be possible if the money spent on all those products were directed to stage IV research.

Stage IV needs more.

Rather than buying pink products, you can donate to my Nifty 50 Fundraiser. 100% goes to metastatic breast cancer research at UW Carbone (also known as the More for Stage IV Fund).

Do that instead.

Author: Kristie Konsoer

I am a breast cancer survivor, living well with MBC since 2012. This blog is a place where I can share thoughts and ideas on how I feel perceptions on cancer must change, and how I am finding a way to live with strength, hope, meaning, resiliency, humor, and hopefully a little wisdom, all while living with what I call a Stage V lifestyle. For me, there is no Stage IV. I am Stage V. I am powerful, I am well, and I am relentless.

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