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

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@ladee

How are you doing?

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I wish that I could say that it all went smoothly but it did not! I had my radical vulvectomy on Jan. 2nd. They also did the radioactive and blue dye to get to my sentinel node which they removed and tested immediately. It came back clear, so they continued with the surgery, without taking any more lymph nodes. I went home with the drain, and after 14 days, the stitches holding it in place broke and

it became infected and I got Mersa. Went back to Mayo and spend another five days in hospital. The surgeon had a tumor board to discuss the case to see if I had to do any chemo, radiation or immunotherapy. They all agreed that I should just recover from the surgery and go back to Mayo every three months to make sure there is not a recurrence.

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@wearkitty

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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Hi @wearkitty, kidney cysts are fairly common and they may not be related to your cancer diagnosis. But still, you want to have confidence in your cancer team and know that they are doing the right thing. I recommend that you ask questions to get a full understanding. Your questions are good ones. You might wish to ask:
- What does the cyst on my renal scan mean?
- How will it be monitored?
- Does it need to be removed?
- Why is my white blood cell count high as indicated in the urine sample?
- How is this monitored?

Kitty, back to your diagnosis of vulvar cancer. What do you know about your diagnosis so far? Do you know what stage it is? Do you have a treatment plan?

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@silverangels

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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@silverangels, I can imagine you are very frightened and feeling defeated. Has the cancer on your tongue and back of throat been confirmed as a recurrence or metastasis of the vulvar SCC? What is the treatment plan? How are you doing today?

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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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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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@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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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

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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@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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@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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