Dawn – “No other options were given to me”

Editor (Kim): This is Dawn’s story.  She is a stage IV breast cancer survivor.  One third of all early stage patients will eventually progress to stage IV, where the cancer spreads to other organs in the body.  Stage IV breast cancer is terminal.  As an early stager myself, stories like Dawn’s break my heart into a million pieces all over again.  Is it not enough to have terminal cancer (which 1/3 of early stagers WILL DIE FROM) but then to have your medical team, who you trust with your body and your life, treat you as though you just don’t matter.  The trauma this causes to a person is immeasurable.  And totally avoidable – good surgeons MUST stand up and speak out against this type of mistreatment, if it’s to end. Thank you, Dawn, for sharing your story.  May it be a light in the darkness for women reading who were victimized in this manner and thought they were alone. YOU ARE NOT ALONE.

I was diagnosed in 2010 with estrogen positive/Her2 negative IDC in my left breast. I had a lumpectomy, radiotherapy and various hormone blockers which were all extremely toxic for me.

In 2014, I was diagnosed again, the exact same cancer in the exact same place.  I was offered a single mastectomy with immediate reconstruction using an implant. No other options were given to me. I had to talk my surgeon into giving me a double mastectomy without any reconstruction. I made it perfectly clear that I wanted a totally flat outcome.

It took a while for all the swelling to settle, with various seromas popping up here and there, and in turn, I wasn’t able to see the true result for some time. When I did, well… I wasn’t happy. Not only did I have a ‘mini boob’ on my right, non cancer side but the cancer side had the appearance of a well-worn road map with lumps, bumps, potholes, extra fat, and even a nicely placed pleat straight down the middle of my chest which is extremely difficult to hide, especially in summer. I have dog ears on both sides.

Now, all my life I have suffered severely with anxiety and social phobia, medicated for over 20 years. Because of this, I didn’t then, and still don’t have the confidence to kick up a fuss/make a complaint/ make a stand…  All the things a more confident woman may have done.  I’m 51 now, and I still suffer quite severely to the point of not being able to talk on a phone.  I understand that even now, 4 years after the operation that I’m still able to go ahead and make a serious complaint, but since being diagnosed Stage 4 with mets (Ed. “mets” is shorthand for “metastases” which are cancerous tumors that have spread to other organs, outside the breast) to my spine and lung I find I’m even less inclined to do so. I just don’t have it in me.

I believe there are probably thousands of women all over the world who have undergone mastectomies and after ensuring their surgeons are completely aware of their decision to be flat, end up with far far less than satisfactory flat results and lack the confidence to stand up for themselves which is why it’s so important that there are women out there like you.

You are our voice.

Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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