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

Thank you Helen. I am happy to share good news, but most importantly to encourage those with similar experiences of decision making. I can't say how many times I was just going to "bag it and see what happens" (right up until the night before! I'm embarassed to say). But when a surgeon says to you (two, actually because I got a second opinion) that you have a good chance of beating this particularly pesky gyn cancer, I would say to everyone, please find a way to consider doing whatever you can to do so.

@mdr3 This is such good news! It’s time for a happy dance, maybe with your dog? I’m so pleased that the second surgery resulted in such a good outcome for you. 😊🎉👏.

Thank you for everyone's suppport. I've been out a week, still quite sore, drains going as they should. Path. report (thankfully) came back earlier this time! After the removal of 16 total nodes (both superficial and deep, both sides) -- all NEG!! At the surgical site (where initially they didn't get the margins they had hoped for) after partial radical vulvectomy, no evidence of residual displasia, squamous cell carcinoma in situ or invasive. Such a tough decision, and second surgeries are always disappointing, I am so grateful! The surgeons just went for it.

It’s so nice that you are updating us! Thank you! I bet your little dog was very relieved to see you! You made me laugh when you said didn’t want your dog to think the bulbs were a toy! You definitely don’t want to overdo it. I did get up a little throughout the day but mostly I just laid in bed with pillows under my knees watching movies and sleeping for several weeks.
I had to keep my lymph drain tube for 3 or 4 weeks. We are all thinking of you!

I agree with the pockets being a good place to keep the bulbs...and remember...you can secure them with more tape . Mine always felt like they were tugging on the stitches that were holding the tubes...drove me batty. I did end up getting one taken out early because I am clumsy and seemed to be pulling at them too much while sleeping. . .

@mdr3 Thank you for coming back and giving an update.

I am so pleased that you are feeling good enough to stand at your computer and do a little work. It's so easy to overdo it, isn't it? I suppose that's why the visiting nurse gave you that caution.

I smiled about the bulbs in your pocket and the excitement of your dog to see you. Nope, sweetie. These are aren't your toys as you get everything out of the way of your dog.

Walking could be good as you'll get a boost of exercise that you don't get standing at your computer! I'd be tempted to settle in with a good book with my legs elevated but then you need to find that comfortable position so that you can focus on what you're reading.

Do you have help at home for your daily needs?

Thanks for this. For right now (while in a light robe) I stick the bulbs into my pockets. When I arrived home my dog was so excited I really had to make sure he didn't think all this stuff was dog toys....stressful for sure! LOL The tubes are really long (they go to the floor). I am hoping that the drain time will be short. Otherwise feeling great. Able to work at the computer yesterday a.m. (standing) but the visiting nurse said to keep that at a minimum right now. Walking is better than standing and both are better than sitting, esp. since if sitting, they want legs elevated...not real comfortable.

Hi. I also had to deal with drains. I didn’t really have pain at the drains, but they definitely make life difficult. I’m not sure if they did this for you, but when I was in the hospital, they put some surgical tape around the tubes and pinned the drains to my hospital gown. When I got home, I kept them pinned to my shirt. That really helped avoid tugging on the drains when I moved around.

Good luck with your recovery.

@mdr3. This is so good that you walked around today. Thank you for offering to help others in this Support Group and discussion.

I have a question. After surgery I ended up ripping my stitches out accidently. So I think I have more scar tissue then normal (I think). The problem is the scar tissue is partially hanging outside my vagina. So I have to wear a thin pad everyday since it causes me to leak urine . I am 55 and don't want to live like this. Has anyone else experienced this?;if so how do u deal with it? My surgery was Nov 2022. TIA