Hello, I got my mastectomy pathology results last week. I’d appreciate any advice or thoughts etc.
They found two additional tumours which was then double the invasive cancer. I also have DCIs and dense breasts. I’ve now got questions over the other breast which was scored 2 in the only mammogram it had back in May. Lymph nodes clear and highly ER PR positive. This has led to doubling the length of tamoxifen advised to ten years. I was stunned for a few days and go back to work next week so kind of feel like lots going on mentally. I’m wondering if any one can share about if/ how extra tumours found affected your treatment and what questions to ask when I see oncology about the tamoxifen. I’m seeing them as the surgeon felt she couldn’t advise more re the drug in my situation (I’m not keen on the drug re risks due to complex gynae history and side effects) Any and all thought very welcome ladies .
It took from May to Sept, Mastectomy in mid October to get a diagnosis and am now somehow in December already before getting pathology back (still waiting FISH test) and the waiting and errors made at original scanning have me less than confident and communication with clinic has been hard throughout. My surgeon is amazing and now I’m thinking maybe I will pursue mastectomy for other breast
I found a lump in April 2023 and, while sizing it with an MRI to find out if I had surgery first of chemo(HER2+ ER+ 8/8 grade 2 20mm) with Herceptin, they found another tumour ( ER+ grade 1 0.9mm) in the other breast. This was classed an ‘incidental’ ( I hate that term, it seemed so dismissive) and that the original plan would be the same as the first tumour was the biggest. I had a bilateral lumpectomy ( told outcome the same as mastectomy ) with radiotherapy as I have two invasive cancers and no DCIS or other areas of concern. Lymph nodes clear on both sides and 5 years of aromatase inhibitors.
I had been at the breast unit the previous year about changes and was told I had ductal ectasia ( stretched milk ducts) so once diagnosed I asked if the cancer was missed. I was assured they would review previous tests to check for any changes.
I would highly recommend thinking of questions you want answering and writing them down. At your appointment, let them know how many you have and tick them off, making notes if needed, to ensure you ask them all.
You can call the BCN nurses 0808 8006000 Mon - Fri 9-4 Sat 9-1 to chat this through with a professional or phone your own breast care nurse.
Dear @marg1 thinking of you, this is the most anxious time for you, waiting, thinking, wondering what way to go. I would wait until you have all your results back, then speak with your team, make lots of notes as we always forget the most important questions. If your unsure don’t make any decisions, think about what’s ahead of you, then make another appointment to meet with the team again.
I’m so sorry I can’t be more helpful, it’s one day at a time at the moment, however I feel sure you and the team will come together with the right decision.
Wishing you well, with happiness ahead. Much love Tili
I really appreciate your support. I have been listing my questions and am pretty good at note taking etc but when given results I then have extra ones come to mind eg around the other breast in the moment. I know the info I get depends on the questions I ask and I only know why my questions are, not what I “should be asking”. I guess I feel so alone within the process as yes the timing/ waiting etc is a bit glacial. I have decided to avoid all relatives over Xmas as I am too irritable/ sensitive for public exposure! I’m aware people just want me to be ok and am trying to connect with other sources of support and wisdom here - really appreciate it
Hi Marg, sorry you are going through this. One thing I wanted to ask was if you had an MRI scan before your surgery? I had, and that was when they found a second tumour. I also have somewhat dense breasts, and neither of my tumours showed up on mammogram. I would request MRI scans at your annual follow ups due to having dense breasts. As others have said, write things down so you don’t forget to ask. Best of luck to you!
.
