Trying to connect with Lichen sclerous and vulvar cancer women.

Sandra

I would like to be one of those people for you. My LS has not progressed to cancer yet. But I am a breast cancer ER+ recurring cancer patient. And, I just ran into the gynecologist yesterday to check out a new white growth and a little cluster of 3 moles which I don’t remember. And, my gynecologist said I only need to see you 2x a year and I said can I come every 90 days!

So I get the living scan to scan in my breast cancer monitoring, and now LS showed up I check myself daily because I have to moisturize and 2x a week use colbetasol.

I just got snappy with my hubby last night because of the pressure. I have to make a decision on whether to stop my aromatase inhibitors that put me an an estrogen deprived state. Of course, no science available so my docs at Mayo and home disagree on course of action (among and between each group).

Here is something we can relate to-
I HATE it when people say - oh you cured, as if cancer is gone and never will return. Women are happy to ring the breast cancer bell at the centers after radiation. I HATED it.

Once you have cancer, the person has to be vigilant, hyper aware to because we know catching things early has serious consequences.

So, yes I relate to what you are saying. I stay up reading articles, joining support groups, and attending summits. Why? Yes, I am a naturally curious person. But that is only a contributing factor. The real reason is there is very little education by our docs. No brochures in the waiting room, no public service announcements on the tv, and very few nonprofit campaigns for awareness. Yes, there are less occurrences of vulva cancer, but it still needs to be part of our education which should be in the schools and our doctor offices. And in our conversations as mothers with our daughters.

I am here and can relate some, but share LS with you.

🙂 xo

Thank you for reaching out I have tried 52 different support groups but none of them can help me with someone who has vulva cancer and I know there are women out there who need this support. I am sorry you are travelling this journey but your dr.should be addressing those little whit spots you have found please let me know how you are doing. Thinking of you sandra

Sandra

I would like to be one of those people for you. My LS has not progressed to cancer yet. But I am a breast cancer ER+ recurring cancer patient. And, I just ran into the gynecologist yesterday to check out a new white growth and a little cluster of 3 moles which I don’t remember. And, my gynecologist said I only need to see you 2x a year and I said can I come every 90 days!

So I get the living scan to scan in my breast cancer monitoring, and now LS showed up I check myself daily because I have to moisturize and 2x a week use colbetasol.

I just got snappy with my hubby last night because of the pressure. I have to make a decision on whether to stop my aromatase inhibitors that put me an an estrogen deprived state. Of course, no science available so my docs at Mayo and home disagree on course of action (among and between each group).

Here is something we can relate to-
I HATE it when people say - oh you cured, as if cancer is gone and never will return. Women are happy to ring the breast cancer bell at the centers after radiation. I HATED it.

Once you have cancer, the person has to be vigilant, hyper aware to because we know catching things early has serious consequences.

So, yes I relate to what you are saying. I stay up reading articles, joining support groups, and attending summits. Why? Yes, I am a naturally curious person. But that is only a contributing factor. The real reason is there is very little education by our docs. No brochures in the waiting room, no public service announcements on the tv, and very few nonprofit campaigns for awareness. Yes, there are less occurrences of vulva cancer, but it still needs to be part of our education which should be in the schools and our doctor offices. And in our conversations as mothers with our daughters.

I am here and can relate some, but share LS with you.

🙂 xo

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!

Thank you for sharing I look at people in the grocery stores and I say they look happy why am I facing radical vulvectomy with reconstructive surgery I have not been able to sit properly for 3 years now and after recovering from all this I am told it can still come back in the same place I am so afraid and I cannot think of anything else but this if any one can help me please reply

It took two years and I was using clobetasol and t was biopsies every year and the third year showed cancer

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!