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One of the hardest things for me to learn after I was diagnosed was to stop people from trying to make me feel better. Why? Often, they made me feel worse, with the best of intentions. I was diagnosed 24 years ago but I can clearly remember some of the stupidest things that have ever been said to me. I beg of you, please stop trying to make us feel better.
“Don’t worry, you are too young to get that”
I actually had two separate doctors say that to me. The first was a surgeon, who tried unsuccessfully to drain the “cyst” he was certain was the cause of the lump in my breast. He looked at me quizzically when I requested a biopsy of my breast lump. I was only 26 years old, but I just had a gut feeling something was wrong. His reasoning for denying my request was because “you will have a scar”. If only he could see the scar I have now.
The second time I was told I was “too young” to get something was after I had been diagnosed. I was with my primary care doctor and I had a “girly” problem. With my health history, I was understandably stressed, and it didn’t take much to get me that way. I wanted to be sure and requested a follow up test to rule out cancer. She looked at me and said it was unnecessary.
I asked her why and she said, “because you are too young to get that”. Flabbergasted, I stared blankly at her for a minute before asking, ‘am I too young to get that particular cancer or just cancer in general? If I am too young to get cancer in general, I feel I am entitled to a rebate.” That would be the last time she questioned any testing I wanted.
“Can I see your scar?”
Come on. I’m not a circus act. I do understand that people are curious. It can be unnerving to hear that someone as young as I was, has breast cancer. You begin to look at your own mortality, and you realize no one is immune. According toYoung Survival Coalition (@YSCBuzz)
“Each year, approximately 70,000 men and women age 15 to 39 are diagnosed with cancer in the US.1”
It is more common than you think and devastating to hear. Our scars are an everyday reminder that no one is guaranteed a tomorrow. Our scars are the proof that we survived something unimaginable, and extremely personal.
So, no, you can’t see our scars.
“Did you end up getting a mastectomy? Your boobs look real”
Let that one sink in. I remember thinking to myself, this can’t be happening. I wasn’t embarrassed as much as shocked. Who asks questions like that? It was said in front of a group of people who were equally shocked at the question. I said something to the effect of “I guess we will never know”, and I walked away.
Breast forms, as they are called, are supposed to look real and they obviously do. They feel real and they even have nipples if you want to go that far. It’s not relevant to us. We are replacing a part of our body that rebelled against us. We want it to look real so that not everyone who looks at us knows what we are going through.
I used to talk to other women who had female cancers. We all agreed on one thing…trying to forget, even for a short time, what we were dealing with, was the most difficult thing to do. I would get dressed every morning and think about my cancer, because I had to put on a breast form.
After a very long time, I forgot during the day about my breast. I didn’t think about it once. When I got undressed at the end of the night, I took off the breast form. I realized I had gone all day without thinking about my cancer. I just lived. It was a turning point for me.
My point is that we don’t want to be about breast cancer 24 hours a day. Maybe today is the day I just don’t want to think about it. It also is a hard hit to your body image. No matter how curious you are, tell us we look great, and leave it at that. We will share our story if we want to.
“I know someone who had the same thing, only she died.”
This one takes the cake. People do it all the time, and they really are clueless about what they are saying, until about 5 seconds later. They hear silence, see your face, and their brain catches up to their mouth. Inevitably, they follow it up with a very sincere, “I’m sure you won’t die”.
People want to connect with you. They don’t know what to say to you and they reach into their past and try to find a connection. There is no malice with the statement. I have heard it numerous times and I did eventually get used to it. At first, it really rattled me. I used to get so upset when someone would tell me “the dead people story”. I started to say, “STOP!”, is this a good story or a bad story? It really made people think.
We want to hear positive stuff. We want to hear about people having the worst cancer ever and living until 100. Those are the stories you tell, or you can just listen. Listening is sometimes the most comforting thing to do for someone going through breast cancer treatment.
What you SHOULD do instead…
We know you want to help. We know you want to say the right thing. It is awkward for all involved. Let the person going through breast cancer take the lead. Let them tell you what they need and be sure to listen, because the answer will be different for each person with cancer. Last, forgive yourself if you say something you wish you hadn’t. You probably weren’t the first and you won’t be the last. You are trying your best, and that is ultimately what shines through.