BREAST CANCER,  BREAST CANCER AWARENESS,  COMMUNITY,  MALE BC,  MEN GET BC,  MENT GET BC TOO,  metastatic breast cancer

A Day In The Life of a Stage IV Breast Cancer Patient

A Thought on Divisions

October 31, 2018

By Leah Taylor

I’ve been thinking about an issue I’ve noticed in the breast cancer community over the last eight years. Eight years you say? Yup, eight years.

Interesting story: about 5 months after diagnosis #1 in my breast cancer story in the fall of 2010, I went to a famous breast cancer website and went to the stage IV area to ask a valid question. (I went to the stage IV area because I was told I had an 87% chance of a second primary diagnosis or a very high chance of mets, etc…due to a BRCA mutation issue.) At that time, I was a new stage IIb, triple negative diagnosis. I was actually new to breast cancer. Because of this staging, I was boo’d out and told I “didn’t belong.” At that time, said website did not have a division for asking for assistance from “higher stage” patients. And, I was too daft to realize there was a hierarchy in the breast cancer community. Silly me.

Another interesting thing: that bru-ha-ha left me with a bad taste in my mouth. Thus, I just have skimmed the website and stood in the virtual corner watching and not participating ever since that happened. It is considered a “go to” for new breast cancer patients. Interesting.

I had already noticed when being introduced to other breast cancer patients the first question I was asked was always “What stage?” I found it a weird question, but played the game when asked. Very interesting.

And, another interesting thing is that I now am the self-crowned queen of breast cancer. I check the boxes in (ER-, PR-, HER2-) (ER+, PR+, HER2-)( HR-, HER+) BRCA1 positive/ and stage IV breast cancer. Yes, you read that correctly. I have been diagnosed with three different breast cancer types, all different primaries, at three different times. And, I am BRCA I positive with secondary breast cancer, so that explains the issue for those in the know. I can verify this, it’s not a lie or a hoax or a joke. Or, the joke might be on me. Lucky me. Lol

***Quick note: Please, please, please don’t feel sorry for me due to my situation. And, anyone reading thinking this is a posibility for you-NO! My situation is very unusual, even for hereditary breast cancer. I am always leary of explaining my situation and scaring newly diagnosed patients. Again: no, no, no, no. Breathe!!! Now that we have that out of the way: you can go back to the main topic again.***

I literally do not fit in any slot in the breast cancer hierarchy independently. I can also check BRCA 1 positive. I can check stage IV. Or, more correctly: Stage IIb with mets. Or, was it the second primary that went metastatic? Or was it the third? I oddly fit in all the big three and don’t care to claim any of them independently. And, why should I? Why can’t I just be a breast cancer patient without having to be put in a slot?

Thus, I come back to the system in breast cancer. I know I can’t be the only person feeling isolated in a very large group of people, can I? Is there a reason for this system? Is this system really helping anyone? I wish I could count on one hand the number of women who have appologized to me for “just having radiation.” Why oh why should anyone appologize to me for their breast cancer experience?

Seriously, people? Aren’t we better than this? Why is minimizing other people’s pain considered appropriate in breast cancer? Sadly, this devisive reality runs across social media, websites, nonprofits, etc…Why? Shouldn’t we be banding together like a giant wave to fix this giant problem?

Can I point out an obvious possibility? Is it possible that these divisions are hurting our cause rather than helping? I know there other people being left out besides us ol’ outliers on the bell curve.

What about men with breast cancer? What about odd types of breast cancer that don’t fit any usual type? Honestly, what are we thinking with all of these divisions in this terrible disease? Are they serving any purpose at all?

We’ve all seen recent complaints from more advanced stages about the walks from the big agency and the pink overdose. I’ve been to one. They serve a purpose. But not everyone feels included.

We’ve seen complaints from men. Most men diagnosed have no connection to the pink explosions. Look, lets be honest, these are valid complaints that clearly show the divisions and problems in our community.

Can I point out another obvious thought? Is it possible that these divisions are keeping us from getting closer to the cure? Is it possible this archaic thought process is helping kill us, literally and figuratively, as a group?

Listen, as the self proclaimed queen of breast cancer I feel I have the right to call out this odd division in our group. I feel I have earned the right to ask these tough questions. Seriously, ladies and gents, can we just leave the divisions for the researchers and consider joining together as one group?

I want to point out that the HIV community in the the early 90’s made great strides by joining together as one group. Imagine what we could do?

I hope you all realize I am not really the queen of breast cancer. I was being facetious. You know, pointing out the problem by showing you the problem. My stats are very real. But, that’s what they really are, stats. I am just a breast cancer patient, waving a white flag, in hopes of opening a few minds.

Many thanks to Sheryl, Pamela, Grace, and Lauren for helping make my last 24 hours at this amazing hospital much better. You all are the needed combination of compassion and professionalism. Bless you. We patients need you more than you know.

Thanks for listening.Am I barking up the wrong tree, people? Are we able to do the right thing here?  Help a sister out?

          “We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you… we are in charge of our Attitudes.”

                         – Charles R. Swindoll

 

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