Louise: My Surgeon Refused to Even See Me

Editor: Louise had to fight her surgeon to get the single mastectomy she wanted, instead of the lumpectomy her surgeon wanted. She suffered a serious complication, a persistent seroma, which affected her aesthetic result. Later, when she inquired of her surgeon about revision, instead of referring her to a plastic surgeon… he simply refused to see her. Louise was crushed because she was so unhappy with her aesthetic result and was now, essentially, being told there was nothing to do about it. Then she came across NotPuttingonaShirt.org and realized that she deserved better. Louise is currently awaiting her revision surgery with a new doctor.

I had a single mastectomy in 2018. I knew I didn’t want reconstruction but had fought so hard with my surgeon who wanted to do a lumpectomy, I didn’t have the strength to argue any more. I was just grateful he had, in the end, agreed.

When I woke I was horrified with what I could see. I wasn’t flat at all, in fact I was almost the same size as I had been. It turned out to be a huge seroma which, so I’m told, stretched the skin so much and with radiotherapy following, was never going to lie flat. It is a mess, even 2 years later.

Louise suffered a severe and persistent post-operative seroma at the mastectomy site.
Louise’s result after the seroma healed and post-radiation therapy.

Recently I enquired of the same surgeon what options I had for further surgery. Without seeing me, he has refused to do anything. Disappointed is putting it mildly.

I then found NPOAS and cried! I had no idea my mess could be sorted, or that I could ask for a second mastectomy[sic] for symmetry. I sought recommendations of other surgeons at the same hospital, and was lucky to have an appointment very quickly. I haven’t had to fight, beg or seek counselling. I was listened to with compassion and understanding. My options for revision and symmetry were discussed, it was a 2 way conversation. She – I decided a woman maybe be more sympathetic to my request – agreed she would perform the surgery. I signed the consent forms and I am waiting for a date for surgery.

“I haven’t had to fight, beg or seek counselling. I was listened to with compassion and understanding.”

I am so grateful to the ladies on NPOAS for sharing their stories, and to Kim for giving me the confidence to seek another opinion.

A note on mastectomy vs. lumpectony: While it’s often true that mastectomy does not provide additional survival benefit to the patient… survival is not the only endpoint that matters. Many women choose mastectomy over lumpectomy not only for the somewhat nebulous “peace of mind,” but to reduce their risk of local recurrence (albeit a typically small reduction), which could mean additional surgery/radiation/chemotherapy in addition to the psychological trauma of a second diagnosis. This is why shared decision making (SDM) is so critical. Listen to Dr. Ted James, head of Breast Surgical Oncology at Beth Israel Deaconess in Boston, on SDM:

“Survival is not the only endpoint of significance… if we inform the patients, if we engage in a process of shared decision-making and then support them in a decision that’s really tailored for their preferences and priorities, that is ideal,” said James. “As long as that process is being adhered to, I think the right things are being done for the patient.”

Dr. Ted James (BIDMC) Forbes

Disclaimer: Any and all information published by Not Putting on a Shirt (NPOAS) on behalf of a third party is for informational purposes only and should not be taken as a substitute for medical or legal advice from a licensed professional. Views expressed and claims made by third parties do not necessarily represent the views of NPOAS.

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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