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

@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?

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!!

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.

Yes that is correct that the lymph nodes on the left side positive for cancer. They took out some on the right side too. I go back tomorrow and will ask more questions. Thanks for the info. Glad to know I am not alone in my struggle.

@bobette1 Before my surgery for endometrial cancer I had a long conversation with my surgeon about lymphedema. She did not bring it up - I did. During surgery she did a sentinel node procedure and removed a few lymph nodes on either side to check for cancer. These came back negative so no other lymph nodes were removed. Had any of these shown cancer she would have removed all of the lymph nodes in the pelvic area and then lymphedema could have been a consequence. Is there a way to avoid lymphedema? Maybe there is as it could depend on which and how many lymph nodes are removed.

It sounds like from what you wrote that that the lymph nodes were suspect for cancer also so these were removed. Is that an accurate assumption? All of the tissue removed during surgery would have been sent to pathology including the lymph nodes and checked for cancer. So the pathology report will tell your surgeon where the cancer was found and then the surgeon can tell you that.

Not everyone experiences lymphedema. There are treatment options and one that I've heard of is massage by a massage therapist who is trained and certified in lymph drainage and edema. Here is a good description of treatments by Mayo Clinic.

Lymphedema
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
Does this help?

Not everyone gets it.
I do think doctors should make you aware of this.
It’s an inconvenience but better than the alternative. 😁

So it sounds like there is no way to avoid .lymphedema. I had no idea. Thanks for the info. #cancersucks!!!!!!

I did not have Vulvectomy, I had uterus and vaginal cuff recurrence. My doctor took out 19 lymph nodes on one side at the top of my leg and 12 on the other side.
No one ever mentioned the possibility of lymphedema to me it wasn’t until 5 years later that the top of my legs started swelling I had no idea what it was. I started to wear compression pants during the day and had some made for the night. I wore these for years then during COVID for some reason I just stopped. I get the occasional aching and wear the pants for a couple of days which helps. I also had lymphedema massages every week which I am sure helped. Suggestion would be to check on the above with your doctor, although I found doctors really are not up to date on this. Lots on the internet though.

I just had a radical vulvectomy on the 21st of November. I had my lymph nodes removed. Wasn't given a choice. But if I had I would probably have them taken out. Have not even thought about lymphoedema just dealing with day by day. Best of luck on whatever decision you make. Hope your recovery is going well too!

Has anyone had just a radical vulvectomy with no sentinel lymph node removal and then later had the lymph nodes removed? My surgery was Wednesday and today the report came in that my tumor was a bit deeper than they thought, though just barely stage 1b depth. Now I have to decide whether to be aggressive and have them remove the lymph nodes or wait and see with CT scans every 3 months. If it was breast cancer, I would say take my breasts as a precaution, but from what I have read, lymphoedema is awful. Any experiences out there??