Has anyone had extreme issues in communication regarding their surgery?
Iv had 2 different surgeons and breast nurses say unkind and unprofessional things to me. They have tried tactics to try to persuade me to their agenda and not what I want.
-tried scaring me by suggesting id have scars on my stomach from using my own tissue for reconstruction despite being skin and bones. Made a referral which proved it was not possible.
-told me bilateral surgury was not possible. Not true, it is at other hospitals.
-told me it was Illegal in the UK to remove healthy tissue. Not accurate.
-told me I would get a psychological evaluation b4 decisions were made. I requested this inpatient. I was told no as my mental health was not a emergency. Then 2 psych nurses came to my ward questioning my reasons for my wishes of double mastectomy and said I would get no psych evaluation and does not know why I was told this.
-was told my breast would fall out if I chose to go to big. I asked for the size I was at my healthy weight.
-was told they can refuse reconstruction if my goals don't align with theirs.
-was told "it be good for my psycho sexual chances in response to not wanting to go flat as im still young.
-was told to only focus on breast with cancer and to eat more and maybe the other breast will eventally look the same.
-was given a second opinion of only 20 min. The surgeon kept checking his watch and when i referred to him as "you guys" he put his hand up saying that was offensive. My cousin had to tell him I was already under stress. This app was to Put me in my place.
Theres much more folks. Iv been treated with alot of hostility. Would love to hear your experiences.
Hi Nat.N26
I am so sorry you are going through this. I haven’t had any experience of communication difficulties of any sort, but just wanted to reach out. It’s tough enough going through a tnbc diagnosis without these sorts of issues. Might it help to speak to one of our nurses to help go through what you have been told and how you might best frame your request? Their number is below. You can also make a complaint about your treatment through your hospital’s patient advisory and liaison service (PALS). Contact details should be easy to find on your hospital’s website.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
