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Re: Bilateral mastectomy support group
Hi Nancy,
I'm glad you posted to this string. For all the months I have been on this site, I hadn't read these stories until now. I have often wondered how many others are out there like me...
I had a bi-lateral mastectomy in Sept 09. Due to my diagnosis, my surgeon and my onc told me to focus on treatment and worry about reconstruction later on if I was interested. I did nothing for about a year and then decided to get prostetics. I generally don't care what I look like around town and really only got them for the dress-up occasions and business trips (I work from home but do travel to an office from time to time and didn't want people focusing on anything but my business ideas).
Not wearing foobs (or having reconstruction) has limited my clothing options but I have found a few options that I like and that I still feel somewhat stylish in. In fact, I wear them so little that my kids and I joke that I'm going to play dress-up when I do wear my 'foobs'. I also find I feel uncomfortable when I do wear them since it's so infrequent.
You mentioned that insurance copays, etc might be too much to deal with. I do want you to know that I have a friend who had a mastectomy who also faced that challenge. She ended up going to Nordstrom's and buying something similar (without a prescription) - she calls them her 'chicken cutlets' (yes, they kind of look like a chicken breast!). It was a low cost solution for her to be able to wear fitted clothing and feel good in dress-up situations. I have heard that specialty lingerie stores also sell something similar if you don't have a Nordstrom's in your area.
Good luck finding something that works for you. I'm sure whatever you decide you will look lovely at the wedding ~ Jen
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6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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