1. < Gynecologic Cancers

Anyone have invasive squamous cell carcinoma of the vulva?

Posted by smmontano @smmontano, Apr 3 4:41pm

I was just diagnosed with evasive squamous cell carcinoma of the vulva. Is there anyone out there who has this?

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westnp1 | @westnp1 | 2 days ago
In reply to @rashida "@westnp1 what symptoms did you have, that led to detection of your cancer?" + (show)
@rashida

@westnp1 what symptoms did you have, that led to detection of your cancer?

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I did not have any symptoms. I had a FemRing (HRT) in and I was changing that and found the lump near my cervix. I think that Fem Ring and the fact that I had HPV
was the reason. It was stage 3.

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leahchawkins | @leahchawkins | 2 days ago

Had PET scan/MRI pelvis 2 days ago after 5/5 biopsies revealed invasive HPV squamous cell cancer in my vulva. No metastases thank god, but the tumor abuts the urethra so surgery is off the table as doc said he couldn’t cut out enough margins for a clean field without going into my urinary tract. Otherwise I would have a permanent urostomy bag.
So, radiation and chemo or chemoradiation is my only option. 6 weeks…. Trying to get my head around that. It’s such a personal, private struggle…. I had to have a total abdominal hysterectomy in 1995 due to HPV and in my naivety, I thought it was gone …. And would never rear its ugly head again….😑😑. I have an appointment in 2 weeks with radiation oncology and will go from there. My initial symptom, and still is, is vaginal bleeding though it is more of a light pink/light brown color now. Have to wear liners all the time.

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justbexlo | @justbexlo | 14 hours ago
In reply to @naturegirl5 "@justbexlo Your appointments following the diagnosis of just yesterday (do I have that right?) are coming..." + (show)
@naturegirl5

@justbexlo Your appointments following the diagnosis of just yesterday (do I have that right?) are coming quickly. That was the same for me. I went from diagnosis to appointments and then on to the hysterectomy in less than 2 weeks.

I am so sorry about your mother. That is such a loss for you and it happened very quickly.

You are meeting with the gyn/oncologist on Tuesday so may I recommend that you talk with the doctor about your mother's diagnosis? Her diagnosis is very different than yours although perhaps the rapidness of the diagnosis to treatment feels very similar. While your diagnosis and that of your mother may not be similar your emotions right now are very tied into the loss of your mother.

I'm surprised that a doctor would say that there is nothing to worry about "down there" after your radical hysterectomy. I suppose that could mean the removal of the uterus but that doesn't exclude other "parts" of your body. I asked my medical provider that I see every 6 months (previously every 4 months) about the practice of pelvic and external exams. She does a very thorough exam externally and internally. I've learned, though, from others here on Mayo Clinic Connect that other women do not receive this thoroughness. I find this puzzling.

Will you please come back after your appointments in urology and gyn/oncology and let me know what you find out?

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I'll met with the gyn/onc today. She seems very determined and no-nonsense. She said it appears to be stage 2 but we will know more after the PET scan next week. Her plan at this point is 28 external radiation treatments and six chemo treatments over six weeks.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | 13 hours ago

@justbexlo Thank you for sharing what happened during your appointment today. How do you feel about the no-nonsense approach of the gyn/oncologist? What do you think about this plan?

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justbexlo | @justbexlo | 12 hours ago

I feel remarkably calmer. I appreciated that she got down to the facts and told me what she thought I needed to know. She let me ask questions after that, which I appreciated.

I am not fully upset that I won't go through surgery. That sounds excruciating. I am not looking forward to radiation or chemo but at least they are options. I was freaking out that it was all too late and there would be no options for me. It won't be easy but there is a plan at least for now.

It felt good for her to say that she expected me to undergo exams for the next 25 years (not that I want to go through those) because she thinks I'll be around for 25 more years.

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | 28 minutes ago
In reply to @justbexlo "I feel remarkably calmer. I appreciated that she got down to the facts and told me..." + (show)
@justbexlo

I feel remarkably calmer. I appreciated that she got down to the facts and told me what she thought I needed to know. She let me ask questions after that, which I appreciated.

I am not fully upset that I won't go through surgery. That sounds excruciating. I am not looking forward to radiation or chemo but at least they are options. I was freaking out that it was all too late and there would be no options for me. It won't be easy but there is a plan at least for now.

It felt good for her to say that she expected me to undergo exams for the next 25 years (not that I want to go through those) because she thinks I'll be around for 25 more years.

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@justbexlo When your future has treatment options and then the doctor tells you that she expects you will have exams for the next 25 years - whew, that’s certainly helps with doubts about the future. Now you know you have options and your Hope can be realized. In your situation, I too would appreciate the facts presented in this way.

Your PET scan is coming up soon. Did your doctor say when you will start your treatment?

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