Helen, Volunteer Mentor | @naturegirl5 | Oct 8 3:44pm
When I was in my 60's (I'm not 72-years-old) a nurse practitioner in gynecology told me that at age 70 I no longer needed annual gynecological exams. Well, that was before I developed post-menopausal bleeding and cramps that led to a diagnosis of endometrial cancer. I was 67-years-old at that time. A gynecological exam can and should include not only an internal pelvic exam but also an exam of external genitalia. This discussion is about lichen sclerous and vulvar cancer which are both very real and certainly occur after the age of 70 years old. I agree with you @kellytzoumis that while vulvar cancer may be less common it should be part of our education and we need to continue our gynecological visits as we age.
You know, it is soooo much easier for me to say I have breast cancer than LS. I have not told many people because I am exhausted. However, our young girls should be taught about this as hygiene education and what to look out for. Breast cancer has become less taboo than LS.
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.
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
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
I am trying a Breast Cancer Index test on my tumor to determine if I am likely to have a second recurrence. This will determine if I continue in estrogen deprivation with the aromatase inhibitors for more years. Some docs think this impacts my LS while my 2 gynecological docs agree that estrogen has nothing to do with the LS.
Please feel free to contact me on those bad days or moments. I never judge and understand the uncertainty and feelings wondering is this it?
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.
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
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!
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!
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
I completely understand. We are going away on vacation to take a break while I make a decision on which treatment pathway I will choose. Found out I can’t use any of the recurrence tests because the tumor came while I was in tamoxifen as a recurrence. My hope were shot of thinking maybe some science can help me.
I have to go somewhere beautiful in nature to relax from the fear and noise.
Does the cancer have a name? I started out with what doctors thought was LS and treated it on and off over 10 years with clob. Then I finally got biopsied and the result came back EMPD. At first they referred to that as cancer but they have since backed off the word. Not even pre-cancer. Now it’s a “condition.” And the treatments seem to be the opposite. For LS it’s a steroid (clob) and for EMPD, if you go the Aldara route instead of surgery, it’s immunotherapy. Which has its own side effects. None of this is easy, but I’m starting to get a better handle on things. At least you have kept up with biopsies. I’ve learned how important that is! Best of luck!
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!
Thank you for your encouraging words. I need to stay positive but as you said easier said than done. Especially when you worry about every little ache & pain you feel!! This is the new me I guess!!
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When I was in my 60's (I'm not 72-years-old) a nurse practitioner in gynecology told me that at age 70 I no longer needed annual gynecological exams. Well, that was before I developed post-menopausal bleeding and cramps that led to a diagnosis of endometrial cancer. I was 67-years-old at that time. A gynecological exam can and should include not only an internal pelvic exam but also an exam of external genitalia. This discussion is about lichen sclerous and vulvar cancer which are both very real and certainly occur after the age of 70 years old. I agree with you @kellytzoumis that while vulvar cancer may be less common it should be part of our education and we need to continue our gynecological visits as we age.
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Like -
Helpful -
Hug
3 ReactionsYou know, it is soooo much easier for me to say I have breast cancer than LS. I have not told many people because I am exhausted. However, our young girls should be taught about this as hygiene education and what to look out for. Breast cancer has become less taboo than LS.
-
Like -
Helpful -
Hug
1 ReactionThank 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
I am trying a Breast Cancer Index test on my tumor to determine if I am likely to have a second recurrence. This will determine if I continue in estrogen deprivation with the aromatase inhibitors for more years. Some docs think this impacts my LS while my 2 gynecological docs agree that estrogen has nothing to do with the LS.
Please feel free to contact me on those bad days or moments. I never judge and understand the uncertainty and feelings wondering is this it?
Xxoo k
I have/bad both. Would be glad to be your sounding board.
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
-
Like -
Helpful -
Hug
1 ReactionI 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!
-
Like -
Helpful -
Hug
3 ReactionsI completely understand. We are going away on vacation to take a break while I make a decision on which treatment pathway I will choose. Found out I can’t use any of the recurrence tests because the tumor came while I was in tamoxifen as a recurrence. My hope were shot of thinking maybe some science can help me.
I have to go somewhere beautiful in nature to relax from the fear and noise.
-
Like -
Helpful -
Hug
2 ReactionsDoes the cancer have a name? I started out with what doctors thought was LS and treated it on and off over 10 years with clob. Then I finally got biopsied and the result came back EMPD. At first they referred to that as cancer but they have since backed off the word. Not even pre-cancer. Now it’s a “condition.” And the treatments seem to be the opposite. For LS it’s a steroid (clob) and for EMPD, if you go the Aldara route instead of surgery, it’s immunotherapy. Which has its own side effects. None of this is easy, but I’m starting to get a better handle on things. At least you have kept up with biopsies. I’ve learned how important that is! Best of luck!
Thank you for your encouraging words. I need to stay positive but as you said easier said than done. Especially when you worry about every little ache & pain you feel!! This is the new me I guess!!