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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: Nov 12 5:54am | Replies (395)

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@mayo101

Thanks so much for the input. It is good to be able to connect with someone who has gone through the experience of having LCIS. My surgeon seems to leave the decision of double mastectomy to me and sometimes I don’t know if my decision to go with it stems from fear or rational thinking. I know that this route is discouraged these days since there is medications, tamoxifen for example, that they say is just as effective. I am a worry wort by nature and taking a medicine that increases risk of uterine cancer will add on to my worries. Also, reading about your experience and others with lobular cancer gives me the sense that this cancer can be tricky unless it is taken care of early. Most people think I am being too aggressive going the route of double mastectomy for just LCIS. What do you think? Thanks any input you can give me.

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Replies to "Thanks so much for the input. It is good to be able to connect with someone..."

@mayo101

First, who are 'most people'? It's good to talk this out with people you love, people you respect, doctors, family, etc. but the decision still has to be the one that will give you the most peace. Unfortunately, that means you are still stuck with this very hard decision. On the plus side....the double mastectomy means a lesser chance of cancer recurring BUT on the negative side....it's a major surgery and there can be downsides there too. When I was struggling with lymphadema (due to the surgery) my physical therapist was a young woman who had been diagnosed with Stage 0 ductal cancer and she had a bi lateral mastectomy. That seemed extreme to me but then she shared that she had seen so many women struggle with lymphadema from the node biopsy she decided to remove her breasts so she wouldn't have to do that part of the procedure and so she'd never have to worry about cancer. That's really aggressive. My point in telling her story to you......everyone is different and no matter what course you take, there are ups and downs. I might suggest you visit the part of Mayo Connect where they discuss the use of the aromatase inhibitors like Tamoxifen. They are not without side effects during use and after use. I personally couldn't tolerate any of them and luckily have not needed them (as far as I know). It might help you to see what other woman have experienced with those. And p.s. even women who have bi lateral mastectomies are recommended to use the estrogen inhibiting drugs. Please stay in touch and reach out anytime if you need to share or even 'vent'. Hugs to you...