Squamous Cell Vulvar Cancer: Who out there has this cancer?

This was my first cancer so I had no idea to even ask about lymphedema or removal of lymph nodes, I don’t even know if the lymph nodes removed were cancerous the doc said he got everything. I was so naive and in shock I don’t know what to ask.

Hey, thank you so much for your post. I can't tell you how much it means to me. It IS so hard, and embarrassing, to have this kind of diagnosis! Like, WHO wants to talk about this? I was given the results of my biopsy yesterday and it was already VIN II. Already have an appointment with a gyn oncologist for surgery. My cancerous area is around my vaginal opening and I'm terrified for the surgery. Will I be completely disfigured?? Sorry to ask but.... I'm scared!!

@shanbam Being frightened and full of fear about your diagnosis and the surgery is understandable. I was frightened too when I was diagnosed with uterine cancer. I was in some sort of altered state because I remember after talking with doctor that I took a wrong turn on my way home and wound up in a neighborhood I'd never been in before but felt like I should know my way out of. I did turn around and realize what I'd done but it shows you where our mind goes when we are that frightened.

There are members in this Support Group and in this particular discussion that will give you emotional support and share their stories.

When is your appointment with your gyn-oncologist? I suggest you write down your questions including what tissue will be removed and this will functionally affect you. Will it affect sexual function? Will you have pain after surgery and if so how will it be managed? Will the gyn-oncologist sample sentinel lymph nodes as is done for breast cancer and for uterine cancer to see if the cancer is in your lymph nodes? If the surgeon does not provide you with a drawing you might ask them to draw you a picture of what the surgery involves. I mention this because my surgeon did that for uterine cancer and I found the drawing helpful as she explain.

Do you have a family member, partner, spouse or close friend to accompany you to your appointment?

Thank you SO MUCH for this information and taking the time to reply to me. I'm new to this group and forgot to check back!! Your suggestions for writing down questions and asking for a picture is absolutely invaluable! I am definitely going to do that. My first appointment is 1/3. I will let you know what happens if that's okay? Again, thank you Helen. Much love and appreciation, Shannon

Next week I will be having surgery to remove an invasive squamus carcenoma of the Vulvar. Sounds like they will be removing my genitals, ugh! Has anyone else gone through this process?

Hello, @afrikachef Your post was moved to this Support Group because there is a wealth of wisdom here for squamous cell cancer of the vulva. I am hoping that other women in this discussion will share their experiences with you.

Our genitals - inside and out - are difficult to talk about, right? If you read through this discussion you'll see that some of the women have said just that. They are frightened, not sure what to ask, and are afraid of how they will feel after surgery. If you read my post from December 16 (above) you'll see how frightened and anxious I was when I was diagnosed with endometrial cancer.

Since your surgery is next week is it correct to assume that you have had a pre-surgical appointment and asked the surgeon what will be removed and what will be spared? Will you have another appointment with the surgeon (gyn-oncologist?) before surgery? If so, please consider writing your questions down and taking a close friend, family member or your partner with you to your appointment. I was so anxious during my appointments that I couldn't keep track of what the cancer care team including my surgeon told me. Having my partner next to me really helped a lot.

What can you do this evening to be kind to yourself? I had a very emotionally rough day today and I just got finished soaking in the bathtub. What is soothing for you?

How did your surgery go??

I had bartholin gland carcinoma. Squamous cell. Who out there has this?

I was diagnosed in August of 2022. I had 6 chemotherapy treatments and 37 radiation treatments. I had to wait 3 months for my PET scan - tumor shrunk but I still have it as well as pre-cancerous cells on the opposite side. I’m in tremendous pain. I am supposed to have surgery March 20th and hoping to have it moved up. This cancer is very rare and would wish there were more forums where we can share experiences.

I was diagnosed in Sept 2022 and had surgery 11/21/22 and an in the middle of 6 chemotherapy treatments and 26 radiation treatments. I was told that they thought surgery would be all I would need. I am considered stage 3. What stage is yours?It is very frustrating as u are right not very common and who wants to talk about it. The lead up to the surgery was terrible since the tumor kept growing and where it was located was soooo uncomfortable to sit or work. I am off work now to get through this treatment. Tell me what it was like towards the end of chemo & radiation. I am 54 so they saying by being aggressive makes it so I have more life to live. I get it the waiting made me feel ignored like don’t they know how uncomfortable this is? Please keep in touch. Would love to have someone else to talk to.
Take care of yourself,
Bobbi Gruesbeck