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Trying to connect with Lichen sclerous and vulvar cancer women.

Gynecologic Cancers | Last Active: Nov 4 3:56pm | Replies (34)
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@andwho

Thank you for responding. It’s important to share our thoughts & feelings. I am turning 68 next week and retired. I agree keeping busy is key. I feel better mentally when being busy. I have grandchildren that help me get through my difficult days & keep me going. Even with good pet mri’s I still fear a return. I was diagnosed in May 2023 and since each day I live in fear. Wish this is all a dream!

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Replies to "Thank you for responding. It’s important to share our thoughts & feelings. I am turning 68..."
Retired desert dweller | @kellytzoumis | Oct 7 11:08am

I live in fear too. On breast cancer the fear goes from scan to scan. I often feel lumps in arm pit, then get additional scans.

I just kinda got use to beast cancer treatment and prevention for 10 years, and lichen sclerous (LS) showed up. I can actually see these pre-cancerous cells. This can turn to a variety of cancers which have no good treatment outcomes.

The anxiety fuels me into research and ideas for how to navigate my journey because the science is limited in LS.

It is exhausting mentally, emotionally, and physically. I don’t know anyone with both LS and breast cancer ER+ which calls into question how to treat both because of the connection to estrogen.

I appreciate the authentic conversations here. And people’s willingness to divulge fear. It helps.

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bijou68 | @bijou68 | Oct 13 7:36pm

I know it is easier said than done: but, please, try not to live in fear. My feelings on that : by living in fear, it causes great stress on the body and weakens your body fighting on your behalf. Cancer is very scary... the word from a doctor sends us into shock. All one can do is being vigilant with our body and follow the experts' advice. You have been diligent so you will continue to give yourself the best chances. You are strong and rely on your strength and your loving family! Keep us posted... Hugs and warm thoughts! You rock!

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