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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@catlove30

God bless you! I was diagnosed with vulva cancer about 2-3 years ago. Thankfully it was caught in time. I went through the surgery with flying colors by a gynecological oncologist in my state. The surgery was radical, I had seven lymph nodes removed, all of which were negative for malignancy. I did not require any chemo or radiation. I have been cancer free since that time and am eternally grateful to my fantastic surgeon!!!!

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Just got the pathology report (at my urging after 11 days): it is invasive squamous cell carcinoma, CD31 revealed no lymphovascular invasion. I think this was a surprise to everyone but me. As I always said, something that hurt that much HAD to be something, especially since the pain ended the day it was removed. Not clear from the report whether the margins are clear. Meet with surgeon in about a week. Well at least I know. I'm 73 and this happened fast. Was symptomatic from beginning of March on.

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God bless you! I was diagnosed with vulva cancer about 2-3 years ago. Thankfully it was caught in time. I went through the surgery with flying colors by a gynecological oncologist in my state. The surgery was radical, I had seven lymph nodes removed, all of which were negative for malignancy. I did not require any chemo or radiation. I have been cancer free since that time and am eternally grateful to my fantastic surgeon!!!!

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@bobette1

I completed 6 weeks of chemo and radiation in March for Vulvar cancer. I seem to have 2 new "lumps" down there where my lymph nodes are. Is this normal?

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I had a squamous cell carcinoma on my vulva but my issue differs from yours due to having my inguinial nodes removed during my partial radical Vulvar surgery because the scan I had before surgery showed that the cancer had already spread into those nodes. I started radiation last week because they are hoping to keep it from coming back.....I have the wild one and I'm worried...hopeful enough to look into trying out some dietary theories I have run across yet, realistic enough to know that I won't be here forever. Good luck!

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@naturegirl5

@bobette1 Oh, that’s over a month away. I wouldn’t want to wait that long to ask about something that worries me. Did you send a message yet via your patient portal? Perhaps you can make an appointment before 6/27?

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I left a message waiting for a call back. They don't answer the patient portal.

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@bobette1

Next appointment until 6/27/23. Thank you for your response.

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@bobette1 Oh, that’s over a month away. I wouldn’t want to wait that long to ask about something that worries me. Did you send a message yet via your patient portal? Perhaps you can make an appointment before 6/27?

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@ljchicago

They are free to reach out to me. Sadly, not new to it, but the first one was literally "scarring" both physically and mentally, and as problems persist, it would be nice to "speak" to people. I can't find a local "in person" group. Even mastectomies have become openly spoken about, but I feel like women's genital areas are off-limits for any kind of talk. We even talked testicular cancer when it was Lance Armstrong! Why did I not even know I HAD a vulva, considering I had dealt with endometriosis, nerve pain in utero, 2 vulvectomies, 3 laps for cervix, partial ovarian removal, etc.??? You'd think I'd be an expert. I had to read up on the topic! But nothing prepared me for being told it was no big deal, when they can only see the surface. They basically fully diagnose/remove any cancer at the moment of surgery, so they can only guess how "bad" until they actually get you under...then you have no say. I felt mutilated after my first. They said it was necessary. The second was much less traumatic and hopeful for me in the future. I was already told at my follow up today that there is new growth, but mild, so it's already coming back! But they don't touch at VIN 1, so Im basically waiting for it to grow until they have to remove again. At my rate, probably early 2023. On top of that, I hit menopause pre-50 and have some spotted bleeding 1+ after, so multiple biopsies on the uterus today. One week to worry about that one. Prayers it's no big deal. Bobette, boxermomma and wheaton, reach out if you want. - Undesirable nearly 50 singleton mom of 3 female teens here in flyover country feeling all alone in this. Seriously could use some sisterhood here.

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I'm curious when u say vulvectomies, what did they remove? I had a vulectomy and they removed my left labia, why ? I'll never know.

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I was diagnosed with squamous cell vulvar cancer in 2014. I underwent surgery, chemo and radiation every day for 12? Weeks. I'm doing OK now but I have lymphedema left leg.

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@naturegirl5

@bobette1 I did not have vulvar cancer. I had uterine (endometrioid adenocarcinoma) cancer in 2019 and a reçurrence in 2021. I think and worry about the cancer almost every single day. For awhile I didn’t tell anyone about my worries but once I did I found out that almost everyone who has had cancer worries about lumps, pains, and most any change they notice. I have pelvic aches and aches in the groin area frequently and finally learned that this is due to the hysterectomy and total hip replacement - two surgeries - I had in 2019.

I think it’s wise to message or call your oncologist and ask about the lumps. It’s frightening to find a change or something new, isn’t it? When is your next appointment with your oncologist?

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Next appointment until 6/27/23. Thank you for your response.

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@bobette1

I completed 6 weeks of chemo and radiation in March for Vulvar cancer. I seem to have 2 new "lumps" down there where my lymph nodes are. Is this normal?

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@bobette1 I did not have vulvar cancer. I had uterine (endometrioid adenocarcinoma) cancer in 2019 and a reçurrence in 2021. I think and worry about the cancer almost every single day. For awhile I didn’t tell anyone about my worries but once I did I found out that almost everyone who has had cancer worries about lumps, pains, and most any change they notice. I have pelvic aches and aches in the groin area frequently and finally learned that this is due to the hysterectomy and total hip replacement - two surgeries - I had in 2019.

I think it’s wise to message or call your oncologist and ask about the lumps. It’s frightening to find a change or something new, isn’t it? When is your next appointment with your oncologist?

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@bobette1

Thank you for your response. I will try and call the Dr in the morning. I feel like such a worrywart. other than those lumps I am feeling good. Back to work at both my jobs. Getting stronger every day.

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Even though I didn’t have vulvar cancer I did have uterus and recurrence in the vaginal cuff.
It’s so normal to be a worrywart I have been getting pains in my lower abdomen for years now. Although I have been having CT’s I always worried that it didn’t show if there was something. To put my mind at rest I asked for a pet/Ct which I just did and there are no signs of cancer. All I can tell you is to be proactive make sure you get all your tests and if you have any pain or discomfort go to your oncologist and get it checked.
Good luck.

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