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.
@kellytzoumis I so very much agree with you. Cancer and the resultant fear is exhausting at every level. I really am glad that you found us here on Mayo Clinic Connect. No one expects us to exude courage at every step. In fact, I would say that there are few expectations here other than sharing your own story and supporting one another. I have been on a few other sites such as the the Cancer Survivors site on cancer.org. Maybe it's because I started my cancer journey here but I prefer Mayo Clinic Connect.
I started with lichen It turned to cancer. In a few weeks I will be having my third surgery and this time it will be a radical vulvectomy with reconstructed plastic surgery. I can identify with you there are almost no support groups for this and I have spent many days looking for one I too feel very alone. I live in Toronto Canada. And I hope you reply to this
Helen, Volunteer Mentor | @naturegirl5 | Oct 7 5:35pm
@sandra1954 Welcome to Mayo Clinic Connect. I'm very happy that you found us. I did not have lichen sclerous or vulvar cancer. I am cancer survivor for endometrial cancer. Since you posted on this Discussion you will find that there are members here who have experienced what you are going through and so I hope you won't feel so alone.
Thank you. It helps to read at night before bed about others. We need to be more open about vulvar cancer. I have not been able to say it out loud except to my hubby and doctors.
I started with lichen It turned to cancer. In a few weeks I will be having my third surgery and this time it will be a radical vulvectomy with reconstructed plastic surgery. I can identify with you there are almost no support groups for this and I have spent many days looking for one I too feel very alone. I live in Toronto Canada. And I hope you reply to this
If you are comfortable, how long did it take to go from LS to cancer? I just started and I keep getting reassured that LS rarely goes to cancer and it takes a long time. I also am told that if I use clobetasol twice a week, it should prevent the shift.
If you are comfortable, how long did it take to go from LS to cancer? I just started and I keep getting reassured that LS rarely goes to cancer and it takes a long time. I also am told that if I use clobetasol twice a week, it should prevent the shift.
Thank you. It helps to read at night before bed about others. We need to be more open about vulvar cancer. I have not been able to say it out loud except to my hubby and doctors.
I had Vulvar cancer, my Dr.
Remove my left Vulva and my Clitoris. I still have problems with my vagina, they had me doing beta chamber 2hours a day 5 days week for 3months to increase my blood to my vagina area I was not getting blood circulation. It helped me alot..I am older 67 when I started my journey and now 69 close to 70. I am still seeing my cancer obyn. I am thankful that I am here. I have 9 grandchildren 2sons. I will do my best to get better. Just have faith and don't be ashamed of this cancer. I needed to talk with my family and close friends. They helped me to fight this cancer!
I have been trying to find a support group for 2 years now that can help me lichen first than cancer Soon to have my third operation for radical vulvectomy with reconstruction surgery and although this is a long recovery I am petrified that the cancer will come back I need some positive feedback
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.
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@kellytzoumis I so very much agree with you. Cancer and the resultant fear is exhausting at every level. I really am glad that you found us here on Mayo Clinic Connect. No one expects us to exude courage at every step. In fact, I would say that there are few expectations here other than sharing your own story and supporting one another. I have been on a few other sites such as the the Cancer Survivors site on cancer.org. Maybe it's because I started my cancer journey here but I prefer Mayo Clinic Connect.
It does help.
I started with lichen It turned to cancer. In a few weeks I will be having my third surgery and this time it will be a radical vulvectomy with reconstructed plastic surgery. I can identify with you there are almost no support groups for this and I have spent many days looking for one I too feel very alone. I live in Toronto Canada. And I hope you reply to this
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1 Reaction@sandra1954 Welcome to Mayo Clinic Connect. I'm very happy that you found us. I did not have lichen sclerous or vulvar cancer. I am cancer survivor for endometrial cancer. Since you posted on this Discussion you will find that there are members here who have experienced what you are going through and so I hope you won't feel so alone.
Thank you. It helps to read at night before bed about others. We need to be more open about vulvar cancer. I have not been able to say it out loud except to my hubby and doctors.
-
Like -
Helpful -
Hug
4 ReactionsIf you are comfortable, how long did it take to go from LS to cancer? I just started and I keep getting reassured that LS rarely goes to cancer and it takes a long time. I also am told that if I use clobetasol twice a week, it should prevent the shift.
There is so little research.
It took two years and I was using clobetasol and t was biopsies every year and the third year showed cancer
Thank you for sharing.
I had Vulvar cancer, my Dr.
Remove my left Vulva and my Clitoris. I still have problems with my vagina, they had me doing beta chamber 2hours a day 5 days week for 3months to increase my blood to my vagina area I was not getting blood circulation. It helped me alot..I am older 67 when I started my journey and now 69 close to 70. I am still seeing my cancer obyn. I am thankful that I am here. I have 9 grandchildren 2sons. I will do my best to get better. Just have faith and don't be ashamed of this cancer. I needed to talk with my family and close friends. They helped me to fight this cancer!
-
Like -
Helpful -
Hug
2 ReactionsI have been trying to find a support group for 2 years now that can help me lichen first than cancer Soon to have my third operation for radical vulvectomy with reconstruction surgery and although this is a long recovery I am petrified that the cancer will come back I need some positive feedback
-
Like -
Helpful -
Hug
2 ReactionsSandra
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
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Like -
Helpful -
Hug
1 Reaction