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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ladee | @ladee | Jan 12 2:49pm
In reply to @scm "I have melanoma vulvar cancer. Had first appt. at Mayo Dec.6th and they took out ulcerated..." + (show)
@scm

I have melanoma vulvar cancer. Had first appt. at Mayo Dec.6th and they took out ulcerated tumor to biopsy and found that it was melanoma vulvar and had a radical vulvectomy seven days ago. They did a sentinel node biopsy, took out the lymph node and it was clear. I go back to Mayo tomorrow morning for my check up. Was hoping to get the drain out but it has to be below 20 cc a day for two days and I am still over 300 cc for one day! They said not to worry and it could stay in two to three weeks to get fluid out so there is less of a chance of lymphedema in my legs. Recovery should take four to six weeks and I will be monitored closely after that for a recurrence but so far, I have been extremely impressed with Mayo Clinic and am happy I am there!

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How are you doing?

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1 reply
ladee | @ladee | Jan 12 4:15pm

I recently was diagnosed with VAIN1 after abnormal pap. I have no cervix so diagnosis was very surprising. Then, when the internal biopsy was being completed the Gyno doctor said you have vulva lesions and would like your dermatologists (never would have thought derm doctor) to biopsy the lesions to check for melanoma. Just had Melanoma and Basil surgery on my back in Oct 2023. Had no idea you could get melanoma where no sunshine is involved. The biopsy on the external sounds very painful compared to internal. Jan 25th will have biopsy. Read can take two or three weeks to heal from biopsy. Does that sound right?

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2 replies
debbiemcginnis | @debbiemcginnis | Jan 13 9:29am
In reply to @naturegirl5 "@crissyd This sounds just awful to me. You have a lot of pain and it sounds..." + (show)
@naturegirl5

@crissyd This sounds just awful to me. You have a lot of pain and it sounds like your doctor isn't listening to or answering your questions. When the doctor thought the bump was a small infected cyst was the bump removed was it sent to pathology? If yes, what did the pathology report say? Any bump or really any tissue removed from your body should be sent to pathology for a diagnosis. There are many other diagnoses the cyst/bump could be.

Do you feel like you would like another opinion from a different doctor? Are there are other gynecologists where you live where you can make an appointment? The pain you are feeling from your side to your back is very real and disruption and could be related to the vulvar bump or could be something else. I can see how worried you are.

Will you get a different medical opinion?

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Please, get another medical opinion. I waiting to long to see one. But so gald I did see one. I am still going through my journey of having Vulvar cancer...

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1 reply
buffalogal | @buffalogal | Jan 13 11:07am
In reply to @ladee "I recently was diagnosed with VAIN1 after abnormal pap. I have no cervix so diagnosis was..." + (show)
@ladee

I recently was diagnosed with VAIN1 after abnormal pap. I have no cervix so diagnosis was very surprising. Then, when the internal biopsy was being completed the Gyno doctor said you have vulva lesions and would like your dermatologists (never would have thought derm doctor) to biopsy the lesions to check for melanoma. Just had Melanoma and Basil surgery on my back in Oct 2023. Had no idea you could get melanoma where no sunshine is involved. The biopsy on the external sounds very painful compared to internal. Jan 25th will have biopsy. Read can take two or three weeks to heal from biopsy. Does that sound right?

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No need to be concerned about a Vulvar biopsy. I've had it done twice with minimal pain or problem. My lesion was first biopsied by my Gynecologic who put 2 stitches in then biopsied again by the cancer Doctor who closed the spot with silver nitrate. The second time was easiest with very little discomfort or problems afterward. I healed from both procedures within 5-7 days.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 18 4:57pm
In reply to @ladee "I recently was diagnosed with VAIN1 after abnormal pap. I have no cervix so diagnosis was..." + (show)
@ladee

I recently was diagnosed with VAIN1 after abnormal pap. I have no cervix so diagnosis was very surprising. Then, when the internal biopsy was being completed the Gyno doctor said you have vulva lesions and would like your dermatologists (never would have thought derm doctor) to biopsy the lesions to check for melanoma. Just had Melanoma and Basil surgery on my back in Oct 2023. Had no idea you could get melanoma where no sunshine is involved. The biopsy on the external sounds very painful compared to internal. Jan 25th will have biopsy. Read can take two or three weeks to heal from biopsy. Does that sound right?

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Hi @ladee, you're right. Melanoma is often associated with sun exposure. But melanomas also can develop in areas of the body that have little or no exposure to the sun. In fact, even inside the body.

All the best with the biopsy. I hope you saw the reassuring post from @buffalogal too.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 18 5:01pm
In reply to @debbiemcginnis "Please, get another medical opinion. I waiting to long to see one. But so gald I..." + (show)
@debbiemcginnis

Please, get another medical opinion. I waiting to long to see one. But so gald I did see one. I am still going through my journey of having Vulvar cancer...

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Hi @debbiemcginnis, I'm glad that you were able to get a second opinion. May I ask what treatments you have had or are having? How are you doing?

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debbiemcginnis | @debbiemcginnis | Jan 18 6:22pm

First I had radiation and chemo altogether. I really can't remember how long. I do know that it did not kill the cancer. I haded aP.E.T. SCAN the Doctor say the scan look good. But I felt something the morning of my visit and ask my Doctor to lool at it..so back to biopsy again. The biopsy this time came back negative but that it would be come cancer if left alone. So back to the hospital and they remove the could be cancer and they send that off and it was definitely full-blown cancer.
So we went in remove my left Vulva and my Clitoris was removed too. Then I waited.. Everything went well in that part. I also had cancer in my Limp note On my left side of my groin the Radiation fried it so no cancer but I in up with..
More later..But so happy to be here with my Grandchildren!!
killed the cancer in the limp node
But it no longer works ( Please excuse my spelling) so my left has

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debbiemcginnis | @debbiemcginnis | Jan 18 8:19pm
In reply to @caddo "I had a PET scan on September 28 which showed no indication that the cancer has..." + (show)
@caddo

I had a PET scan on September 28 which showed no indication that the cancer has spread. My oncologist referred me to another oncologist to see if it is in my lymph glands at the same time as the vulvectomy. I met with the second oncologist and she said they were going to remove lymph glands, not just check them. I had obviously not understood what my oncologist told me. I am thankful for this support group. It was so helpful to read about other’s experiences. I had no idea the extent of what will be done and the recuperation required.

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I hope you are feeling better now...

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silverangels | @silverangels | Jan 23 1:45pm

Yes I had SCC vulvar cancer I had 4 surgeries in 17 months they last said everything looks good after they sewed up my vulva closed and removed my clitoris and four days ago I developed SCC on my tongue base back of throat. I don't know what to do. Feel so defeated. 😭

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2 replies
wearkitty | @wearkitty | Jan 25 8:00pm

just got diagnosed and kind of feel I'm not getting all the info as they said nothing wrong with my kidneys and bladder but there were two cysts on my renal scan i was not told about and a lot of white cells in my urine with no bacteria or other signs of infection. I have to say I'm a little scared! thanks for listening

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