Path to Vulvar Cancer (high grade squamous intraepithelial lesion)

@naturegirl5

I tried to include the summary from the Medicare site. Hopefully I did it right. So for me, I had a PAP/cervical exam at 65 but then it went to every two years. Prior to being on Medicare I had this exam annually. So maybe Medicare didn’t change during this time, but Medicare’s payment rules were more limited. My gynecologist did not suggest that this was inappropriate. In hindsight, knowing that endometrial cancer is a frequent cancer in post-menopausal women and that the occurrence rates are rising, this seems inappropriate.

@ffr Thank you for posting this from Medicare. I wasn't exactly sure what you were referring to and now I know. I recall my gyn telling me that I no longer needed frequent (annual) Pap Smears when I was in my late 50's as 1) the medical guidelines had changed and 2) I was not high risk. I don't know, however, if a pap smear would be useful screen for endometrial cancer. If the endometrial cancer had spread to the cervix then I'm thinking the pap smear may pick up those cells. But if the endometrial cancer had stayed in the uterine lining then what? Other than an ultrasound or D&C I don't recall any tests for endometrial cancer being offered. And for me, these were offered when I developed post-menopausal bleeding.

My story is similar. However, after I had the bleeding & ultrasound i had an internal with my gynecologist and she saw that my cervix appeared abnormal. Would that have shown up a year before? Maybe or maybe not. I can’t look back.

@ffr I'd have to ask my gyn who well she can visualize a cervix ? My understanding is that is that a colposcopy would be needed for that. Following my hysterectomy I no longer have a cervix but now I'm very curious. Like you, I can't look back but I ask these questions to help others here on Mayo Clinic Connect.

Well, she saw something and she didn’t hide it. For whatever it’s worth, after my pathology report from the oncologist was shared with her, she called me. She told me how very sorry she was and that I might want to consider speaking with my priest or rabbi. How’s that for a message of impending doom?
I picked up this same death message from other doctors via silences, extended eye contact (or no eye contact), and long pauses before answering my questions. I don’t think any of them expected me to be alive now, 3 years later. But their messages, on top of the known seriousness of my grade & stage of EC, still resonate…. and I live knowing that the other shoe will eventually drop.

@ffr Your experiences are so disturbing at so many levels. I just wrote a letter of recommendation for a friend who is a chaplain and is applying for chaplaincy positions in hospital settings. When I think of this friend I think of empathy, no pity (which is what you've described in my view), and a warm and pragmatic approach. I realize that medical providers are not chaplains but this can't be the first time these people have shared frightening news with their patients. And now as I think back to when I met with my gynecologist and asked for a referral to Mayo Clinic he started talking about clinical trials as if I wouldn't make it through the initial stages of treatments. And yet, here I am, 6 years later with no evidence of disease (NED).

I don't know. I'm thinking some providers do this sort of thing better than others. We may not remember the exact words we are told but the emotion sticks with us.

I hope you can live day-to-day even though it is possible that the other shoe will drop. But then, here is something to ponder. What if that other shoe doesn't drop? That's a possibility to, right?

Thank you for your kind and thoughtful response. Your last sentence about the shoe not dropping is a great visual for me. And it reminds me of a friend who told me to think about the lottery, that “despite the odds, somebody has to win.”
Let’s walk away with that, with one shoe on and one shoe off!

@ffr Yes, I like that. Walking forward (walking away) with one shoe on and one shoe off! As you said it's a great visual.

My experience was less than ideal. Had a "sore" spot on vulva. Was told I had lychen sclerosis and given a cream to use. 6 weeks later, sore was still there and a "mole" popped up. Went back and was told that it would need to be biopsied but no time available til next month. 30 days later biopsy done and was told I had squamous cell carcinoma. Was scheduled with a local gynecological oncologist. Again a wait. Her advice was that I needed to have a total radical vulvectomy with everything removed. She also advised I would no longer be able to work or care for myself and could expect to be in adult diapers and have lymphedema for the rest of my life and would need to keep my legs elevated. I was not happy with this diagnosis and then went to Moffit. What the gynecological oncologist there told me was even more horrifying. I walked out hysterical. A friend suggested I go to Mayo. Thank goodness for that. My doctor at Mayo was mystified. He told me he was not seeing what the other two physicians saw. He scheduled me for excision of the area and that was performed in March, 9 months later. Yes, that's how long it took to get pathology and records transmitted and be scheduled for surgery. It was a small amount of VIN3 tissue. The bulk was removed with the original biopsy. The "mole" was a malignant pigmented lesion. Ironically the prior two doctors said it was a mole and nothing to worry about.... The surgery was quick and not nearly the experience I was expecting. It was uncomfortable for a few weeks. Ice is definitely your friend. The best advice I can give anyone with a similar situation is to seek as many opinions as it takes to make you feel comfortable with your decision. A year later I now have an abnormal pap (my first). We will see where this takes me.

@komiskey10 reading this I just shook my head, after being diagnosed with squamous and meeting my oncologist for the first time he stated he has never seen this in a woman only homosexual men….good grief I should have run out the door!