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Jul 3, 2018 12:24PM
Jul 3, 2018 12:25PM
I am very sorry that you find yourself here and in this situation. It is indeed rough going. I also have several autoimmune illness', further co-morbidities, and have been disabled and exhausted by these illness for over 15 years (and off and on since age 13). This all influenced by decisions greatly. My greatest focus is on quality of life and I must repeat this to my physicians almost every time I see them (particularly my new ones in the breast cancer world). Since I had bilateral breast cancer a double mastectomy was my best choice. I could have had a lumpectomy on one side, which I would have liked for the lesser surgery, but then I would have needed radiation, and almost all my doctors who know me well felt that radiation would have been a difficult process for me. Exactly one half of the tumor board felt that given my lymph node status I should have radiation and the other half agreed that with my health situation it might not be my best bet. So I declined radiation. You did not mention radiation so I am not sure if you were told it would be needed with a lumpectomy or not, but generally speaking it is standard of care with a lumpectomy.
I also opted for supra pectoral implants for my reconstructive option. Looking back I think I would have chosen to go flat, but here I am with some implants and I am uncomfortable, but not in a high level of pain. If I thought that not having radiation was out of the question then I would have gone flat. The supra pectoral implants (they also require a whole new paradigm for screening) were suggested as a way to avoid a lot more pain, as I generally have chronic pain. I am exactly one year out from my reconstruction and the uncomfortable feelings continue to diminish almost monthly. If this is what I am left with then I am okay with that.
Like dtad (hi dtad, nice to see you!), I also declined AIs from the outset. I was not willing to risk any further quality of life (I am extremely sensitive to medications). I am comfortable with the risk I am taking, although the acceptance did not happen overnight. I do practice time restricted feeding (fasting for over 14 hours in the evening... which has been shown to greatly reduce recurrence), as well as using other supplements, diet, and movement to support myself without AIs.
Although I was overwhelmed and unprepared for an entirely new illness, I did my best to bring all my self care, knowledge of the medical system, and knowledge of self to this new rodeo (but not my first!). I pace myself, and care for myself in ways that I did not before and interestingly my friends and family rallied more than I anticipated. I thought they would be as exhausted as I, but interestingly this was one illness they could understand, as well as fear, and they really showed up in strong ways.
Please let us know how you are doing, and feel free to ask any more questions. I will be thinking of you and wishing you peace and comfort.
May we all be well.
May we all be well
5/11/2016, IDC, Right, 2cm, Stage IIB, Grade 2, 2/24 nodes, ER+/PR+, HER2+ (FISH)
6/10/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
8/15/2016 Herceptin (trastuzumab)
10/15/2016 Gemzar (gemcitabine)
2/23/2017 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
6/5/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant