1. < Gynecologic Cancers

Squamous Cell Vulvar Cancer: Who out there has this cancer?

Posted by bobette1 @bobette1, Oct 10, 2022

Just diagnosed a week ago. Who is out there with this cancer? Looking for advise, tips and what to expect as I start my journey. TIA

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nomikins | @nomikins | Aug 11 11:27pm
In reply to @brandysparks "@nomikins - Hi! The Imiquimod (Aldara) has had no burning impact for me, which is surprising..." + (show)
@brandysparks

@nomikins - Hi! The Imiquimod (Aldara) has had no burning impact for me, which is surprising but I guess not unique. It did make me wonder if it is/was working. I will try to see what I can see on visual inspection (it is difficult to do this, in my experience), but I sure hope it is working! I have the follow-up appt w/m oncologist in early Sept, at which point that'll be 2 months of Imiquimod application.

Also, appreciate your mentioning your experience with EMPD. I think I will mention this to my gyne-oncologist. May I ask how it was diagnosed? I'm guessing it was a biopsy with the lab assessing the cellular structure and type/s.

Geez! As far as the Aldara then, if your gyne-oncol recommends it, absolutely go for it, and I hope it will be effective for you. Is there anything else you have to be concerned with when being diagnosed w/EMPD?

Best to you, and keep posting, as you can.

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In terms of the dx of EMPD, yes it was by punch biopsy. And then many more mapping biopsies all around the vulva to find how widespread. The biggest concern is that Pagets can go from non invasive to invasive. But they say it’s very slow moving. Even so, we really don’t know how long I’ve had it because I was being treated for LS all this time, which was never confirmed by biopsy. Ugh. Wish I had had it biopsied from the get go.

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brandysparks | @brandysparks | Aug 12 6:25am
In reply to @andwho "Welcome. This the first step to recovery. Support. I was diagnosed with stage 1B vulvar cancer...." + (show)
@andwho

Welcome. This the first step to recovery. Support.
I was diagnosed with stage 1B vulvar cancer. No lymph nodes were involved thank god. No surgery lesion was too big. Went thru 3 rounds of chemo 32 radiation treatments. Have had 1 follow up pet mri all was good, going for the 2nd pet mri this week and hoping all is good! Having had cancer is a life changer you never forget. My vulvar is not quite the same & skin still sensitive when sitting & driving. but this is the new me!
I am happy to answer any questions.🙏

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@andwho - Oh my! Best wishes this week.

Thinking of you, and do check back so we can keep the good thoughts coming!

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bijou68 | @bijou68 | Aug 12 11:55am

To you All! You are all courageous! We are all in it together and it is a heartwarming feeling. My oncologist who proposed Imiquimod (Aldara apprently) was an alternative to have surgery as i had too many spots. The side effects you can work with. I will be glad to fill you in what i did to alleviate the effects. So far both my oncologist and my gynecologist say that Imiquimod is working well for me the two times over 3 years i have had to use it. So far! Let's be honest! Who knows what is in store for me. Give it a try before doing more drastic treatments. Unfortunately we are more like in the trials and errors for all of us! Prayers and healing thoughts to you All!

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bobette1 | @bobette1 | Aug 14 7:10pm
In reply to @andwho "Glad to hear you are in remission. I’m afraid for myself that the fear will always..." + (show)
@andwho

Glad to hear you are in remission. I’m afraid for myself that the fear will always be there.
Have you experienced any late side effects? I seem to develop issues I’ve never had prior to radiation.

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What kind of issues are u having? I have swelling that comes and goes at incision site, especially if I do a lot of physical activity. I get hair follicle bumps where hair used to be. But they go away. At first I was scared of the bumps not knowing if it was the cancer coming back. Remember you are stronger than you believe!!! #yougotthis! #cancersucks

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andwho | @andwho | Aug 15 9:15am

Thank you!
My issues are the changes to the vulvar area even though no surgery. Skin change, sensitivity, on & off itching. Even no interest in being intimate with my husband. Thank god he ubnderstznds! Just got my 2nd pet mri results after 1 year finishing treatment. All was good. I think I just need to learn to live my life as this is the new me. What do you think?

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2 replies
bobette1 | @bobette1 | Aug 15 6:59pm
In reply to @andwho "Thank you! My issues are the changes to the vulvar area even though no surgery. Skin..." + (show)
@andwho

Thank you!
My issues are the changes to the vulvar area even though no surgery. Skin change, sensitivity, on & off itching. Even no interest in being intimate with my husband. Thank god he ubnderstznds! Just got my 2nd pet mri results after 1 year finishing treatment. All was good. I think I just need to learn to live my life as this is the new me. What do you think?

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That is great that your husband understands. I am single so no issues there. That cream we talked about should help with itching too. So glad to hear you are clear at this point. This is your new normal, at least for now. May I ask your age? I am 56 and finding everything takes more time to heal since my treatment.

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1 reply
andwho | @andwho | Aug 15 10:12pm
In reply to @bobette1 "That is great that your husband understands. I am single so no issues there. That cream..." + (show)
@bobette1

That is great that your husband understands. I am single so no issues there. That cream we talked about should help with itching too. So glad to hear you are clear at this point. This is your new normal, at least for now. May I ask your age? I am 56 and finding everything takes more time to heal since my treatment.

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I am 67 & diabetic.
Most of my pet mri results this week were good with the exception of one concern. Hypermetobolic uptake in the rectosigmoid likely physiologic . See my radiologist tomorrow to go over results . So nervous!
Any response!

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nomikins | @nomikins | Aug 17 1:14am
In reply to @andwho "Thank you! My issues are the changes to the vulvar area even though no surgery. Skin..." + (show)
@andwho

Thank you!
My issues are the changes to the vulvar area even though no surgery. Skin change, sensitivity, on & off itching. Even no interest in being intimate with my husband. Thank god he ubnderstznds! Just got my 2nd pet mri results after 1 year finishing treatment. All was good. I think I just need to learn to live my life as this is the new me. What do you think?

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So is the PET MRI supposed to be in lieu of biopsies? I’d love to know. Had so many biopsies…

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brandysparks | @brandysparks | Aug 17 6:36am
In reply to @nomikins "So is the PET MRI supposed to be in lieu of biopsies? I’d love to know...." + (show)
@nomikins

So is the PET MRI supposed to be in lieu of biopsies? I’d love to know. Had so many biopsies…

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@andwho - Best wishes with your radiologist appointment.

I second @nomikins Q about the PET MRI...I'm not familiar with that, and what or how it is used in this situation with Vulvar (pre-)Cancers?

Hope to hear from you on how things are since your latest appointment.

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1 reply
andwho | @andwho | Aug 17 7:42am
In reply to @brandysparks "@andwho - Best wishes with your radiologist appointment. I second @nomikins Q about the PET MRI...I'm..." + (show)
@brandysparks

@andwho - Best wishes with your radiologist appointment.

I second @nomikins Q about the PET MRI...I'm not familiar with that, and what or how it is used in this situation with Vulvar (pre-)Cancers?

Hope to hear from you on how things are since your latest appointment.

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A biopsy is different from the pet mri. The pet mri is used to track the cancer if any. My report came back good no sign of it. Thank god. It still doesn’t change the fact that I will always live in fear. This is the new normal for me! Hope everyone is hanging in there. I can answer any questions anyone has🙏

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