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Having Pots And Needing Mastectomy. Anyone Else?


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I had a bilateral breast reduction in 2006; not quite the same surgery, but certainly was major surgery in the same area. It took me about 2x as long to recover as a typical patient. Additionally, they were well aware of my autonomic problems and took special precautions when it was time to get me up and walking.

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Thanks MightyMouse! I am looking at having to have double mastectomy and would like reconstruction. It will involve multiple surgeries but the first one is the scariest and longest 8-10 hours. I'm most worried about being under anesthesia that long. I don't handle it well and I've never been under that long.

I know to expect the extended recovery but I'm also afraid that all of this will throw me into an autonomic flare.

It's all a bit overwhelming right now.

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So sorry to hear this Poohbear!! What a major drag.

Don't have any advice for you but am sending you major big HUGS and prayers!!

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Thank you Chaos! It is a scary thing to deal with these choices about treatments and surgeries. It looks like I'm in a category by myself since I've not been able to find anyone else with autonomic issues who has also dealt with treatment and mastectomy so I'll certainly check back here to share my experiences in case anyone else ever runs across these issues.

Thanks for the hugs and prayers :)

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I am terrifed of POTS and being anesthetized. My fear is that I will actually faint during the operation, and the anesthesiologist would not know because my blood pressure would be normal.

I chose to have a gastroscopy without sedation. Big mistake.

I'm sorry I can't advise you on the possibility of a masectomy.

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Sorry to hear such news Poohbear.

Mum went through this and came out the other side 10 years ago, but she didn't have POTS.

I do have POTS. Last week I found a lump in my breast. I went straight away to my GP, who found a second smaller lump close to the original one and a third in the other breast. Off to hospital on Wednesday for further investigation - trying to keep my nerves in check!

Although you may well be an unintentional trailblazer right now, your experiences will be so helpful for others.

I wish you all the very best in your journey. X

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There was someone else on here awhile back who was undergoing treatment for breast cancer but I keep wracking my brain for their name and can't come up with it. Was hoping they'd chime in.....

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