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

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??

@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.

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

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.

Good question to ask @sillywabbit. I hope @vsinn2000 @ljchicago @bobette1 may be able to offer some tips to help you prepare for vulvar cancer surgery and recovery.

A donut pillow sounds like a very wise idea.

Looking for advice for post-surgery. Is there a donut pillow you recommend? I would like to be as prepared as I can. So far, scheduled for Nov. 30. Any other tips?

Great, thank you!

That's soon so good news that you will get in quickly.

How are you feeling today?