Trying to connect with Lichen sclerous and vulvar cancer women.

I developed Lichen Sclerous (moderate atrophy) at year 5 of exemestane AI treatment for stage 1a er+\pr+ as a recurrence after hyperplasia (treated with tamoxifen 5 years) detected on first instance. Concerned about not extending AI for another 5 years due to lichen condition since this was a recurrence. And, how to best treat lichen to avoid skin thinning from clobetasol.

I had suffered with lichen sclerosis for quite a few years before being diagnosed with it. Always thought maybe yeast infection or being sensitive to detergents until I developed a lesion on the right side of vulvar. Biopsy came back vulvar cancer stage 1B. A life changer as many I’m sure will say the same.
No surgery had 32 rounds of radiation and 2 chemo treatments. They wanted me to have 5 chemo treatments but I could only stand 2. It is a year later. Had 2 pet mri’s each time came back good. But still live in fear each day. Even the smallest pain in a toe makes you think is it back. Crazy! I do have late side effects from the radiation. But I’m alive . If anyone would like to share their experiences I would love to hear from you so we are not so isolated. Thanks for listening!

For three years I have been going to a good dermatologist with a lesion on the left labia. He diagnosed it as lichen sclerosis and I was put on clobetasol. He tried a few other orintments when that wasn't working. Nothin did any good. Don't know quite why we never did a biopsy until this June but it revealed I have ExtraMammary Paget's Disease. Found out in doc terms ExtraMammary means NOT in the breast. So in the vulva. I am now in treatment for that condition. But it has been interrupted by the sudden loss of vision in my right eye, followed by an 8 day hospitalization. And after that I caught covid and just got home today from a 10 day stay in the hospital. I'm 84, so no spring chicken. Not trying for sympathy. Just stating some facts. Glad to answer any questions.

Hi @kellytzoumis, I hope you saw the helpful posts from @joyceinil and @andwho. Having a gynecologic cancer can be very isolating. I'm glad you found Mayo Clinic Connect. How are you doing?

Does anyone feel the same..,
My life has changed & will never be the same.
Any advise on how to deal with this would help!

@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?

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!

Thanks for the posts and connections. I am seeing my gynecologist at home today because I found a white mass and collection of discolored dark cells over the weekend. I respond well to clobetasol twice a week and use moisturizing vulva creams in between. Sometimes I use baby desitin based on recommendations from my Mayo gyn.

I don’t know anyone who has LS other than these digital
Boards. I meet with an endocrinologist this month who is measuring saliva and blood to check for adrenal glad precursors to estrogen because when I end exemestane this month I want to make sure they are not overproducing androgens that lead to estrogen. I am a PCO so this is another factor.

My situation is complicated with recurring breast cancer over 10 years while taking tamoxifen. I end AI this month. Scared out of my mind. Had max radiation already for second recurrence.

I would love to read more and stay in contact with folks jere#

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.

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.