Hello,
I recently underwent what I understood would be a simple lumpectomy to excise a 5mm tumour (IDC) together with a SLNB (x2 nodes). The first surgery involved a perioperative re-excision which resulted in the removal of a much larger volume of tissue than was discussed (46mmx41mm35mm).
The following night I was readmitted for the surgical evacuation of a 100cc haematoma.
Close to a week later during the results apointment, I was relieved to hear from the fellow that all the pathology had been removed and that I had good margins and clear nodes. I received a referral to the radiation oncologist recommending radiation therapy with boost. When I asked about the boost I was told it was additional radiation to the tumour bed. Once in the reception area I wondered about this and read the histopathology report to discover that the anterior margins were focally involved.
I was concerned about this but due to the busy nature of the clinic, I was unable to speak with the surgeon or nurse that day. The following day I spoke with the nurse who explained that a decision had been made to leave the residual pathology. I was uncomfortable with this and asked to speak with the surgeon. An appointment was made with the surgeon for two weeks time. I was experiencing significant nerve pain in the armpit and had also developed cording.
During the call with the surgeon, she explained that a skin re-excision of the anterior margin was not recommended but that if I was unable to sit comfortably with the residual pathology she would perform the surgery.
I was able to see her in person to discuss the particulars a week later. My preference was to have the surgery which was made available a day and a half later. In theatre the surgeon made a comment indicating she was displeased with me.
She did not come and see me following the surgery. I saw her briefly a week later to have the wound checked and she advised me that the nurse would check it again the following week instead of her. She said she would see me in six months.
While the team are great and other people have had good experiences with this surgeon, my journey has been a tumultuous one. I am grateful that the surgeon responded quickly to the initial bleeding complication but my trust has been eroded by: the lack of transparency around the results; the perceived hostility shown around my decision to have the re-excision as well as what I believe to be an unprofessional comment made in the theatre.
The radiation oncologist was professional, helpful and personable and let me know that I had made the right decision. As they were now aware that I had clear margins I would not need a boost.
Now that the surgical treatment is over and I await radiation therapy, my experience plays on my mind. So much so that I am considering changing to another surgeon for follow-up. I would also like the option of potentially having cosmetic intervention in future for the volume loss in the affected breast.
I would appreciate hearing from anyone who has made the decision to change teams and know how and at what point in their journey they did this. I am also wondering whether I should just endure one 6 month and 5 annual follow-ups. Thoughts?
Thank you xo
but the most important thing was/is my absolute trust in my team. I got the level of care and competence I was expecting. They were so quick to react to any problem I had, I felt safe. I also had a hematoma by the way, so you have all my empathy! It’s scary. My surgeon was so apologetic, she stood up for when I was very distressed and held my hand.