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@naturegirl5

@andwho I do not have vulvar cancer and so I cannot offer you specific support on this. I am a cancer survivor for endometrial cancer and not in active treatment. I can offer this. Our lives have changed in a way we never expected or could have prepared for. When I was diagnosed with endometrial (endometroid adenocarcinoma) cancer in 2019 and then a recurrence in 2021 I did what @denisestlouie has shared in her discussion on a Life Well Lived.
https://connect.mayoclinic.org/discussion/a-life-well-lived/
I got very practical as it helped me to deal with the tremendous threat and anxiety I felt. I looked through all of my instructions, my will, and my trust, in the event of my death. Of course I was hoping that I would survive - and I did - but there was something existential about the cancer diagnosis that hit me in the face. I knew then as I know now that I am mortal. I followed all of the advice and recommendations from my cancer care team which also included (and still includes) an Integrative Medicine physician who specializes in oncology.

This comes back to me as doing everything I could think of to control what I could control. What I could not control was the diagnosis but I could make and "control" my own decisions on the treatment recommendations.

Some days were and still are harder than others. My recipe for myself is to move. If I sit still for too long my mind goes to dark places. When I move the anxiety comes down and I feel better.

Does any of this help?

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Replies to "@andwho I do not have vulvar cancer and so I cannot offer you specific support on..."

Thank you for this post. I just did the exact same thing in terms of filing a will, beneficiaries and deed upon death, various powers of attorney.

I was going to extend the AI pills but have to rethink the risks. Mayo was helpful. I am balancing 2 potential cancer locations. There is no science on connections from aromatase inhibitors and LS pre cancer cells. Thus, my team of doctors do their best but have no data to base recommendations. The result is contradictory approaches which leaves decisions to me.

I have already adopted monitoring daily and application of ointments for the Lichen Sclerous. And, I do MRI and 3D mammos annual plus 90 day blood panels. As a PCO, I am insulin resistant and now taking mounjaro (lost 55 pounds) because beside the obvious burden on the body, estrogen is stored in adipose (both subcutaneous and visceral).

I find these posts so helpful.