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

I am having my surgery tomorrow morning. I believe a donut pillow will be very helpful. I have been using one for awhile now. I don't want anything touching it cuz it's so sensitive not sure about yours. Best of luck with your surgery. I will update when I can after my surgery when I can.

Thanks for writing on the eve of your surgery. I'll be thinking about you tomorrow.💜

@bobette1 I'm so glad you checked in and gave some helpful advice to @sillywabbit. I'll be thinking of you tomorrow and hope for updates when you feel up to it.

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??

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!

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.

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

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

@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?

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.