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Sep 12, 2017 04:02PM
Hi, I was diagnosed with IBC in July 2015. I had AC x 4 and was only able to tolerate 6 cycles of paclitaxol/ docetaxol due to peripheral neuropathy. (I have severe pain with walking now and balance problems with occasional falls, so I have no regrets that I did not persevere through it.) I developed mets in liver and bone whilst on this and was then told the lung nodule on diagnosis was a met after all. I am triple positive and had herceptin and Perjeta with this. I have been on these 2 drugs ever since and achieved "no evidence of active disease" in August 2016, which was great! I did not have surgery or radiotherapy.
Last month my annual breast ultrasound showed that the original tumour has regrown, and I have 2 new areas around it. I continue to have no new mets, which is great. My oncologist recommended mastectomy and commencing on Tamoxifen, whilst continuing on herceptin and Perjeta, as she said they were controlling the mets. I saw the surgeon yesterday who said I had to have a full mastectomy and would not be able to have a reconstruction due to needing post-op radiation. I queried whether I still had IBC because my breast looks nothing like it did when diagnosed 2 years ago, but she said it is always treated as the original cancer.
Since I have been living with Stage 4 for over 2 years and know my life expectancy is reduced, I am reluctant to have a mastectomy if I cannot have a reconstruction completed in a relatively short time. I asked for biopsies of the tumours to see if the ER/PR and HER2 status has changed, which would mean a treatment change. I also asked for a referral to a plastic surgeon for expert opinion on my reconstruction chances. I would prefer implants as the surgery is easier and completed in a shorter time, but also because I enjoy the gym and do not want to sacrifice muscle which would further reduce what exercise I could do.
I see above that the majority of those with IBC cannot have implants, which is disappointing. I will wait to see what the plastic surgeon says but am thinking that if I choose to forego radiation (due to being stage 4 where quality of life is the priority) I may be able to have implants? Does anyone here have any knowledge/experience/ thoughts they could share please?
7/2015, IBC, Left, Stage IIIC, ER+/PR+, HER2+
10/2015, IBC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2+
8/2017, IBC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2+
2/7/2018 Lymph node removal: Sentinel; Mastectomy: Left
3/25/2018 Whole-breast: Lymph nodes, Chest wall
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)