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

So I'm in the hospital right now, having had the vulvectomy yesterday. Partial radical (had first surgery in May and they didn't get it all, why this second surgery). Had bilateral lymphadectomy and the left side hurts the most. Will be getting out of bed for the first time shortly, but I can already tell it is hurting at the drain on the left. I have never taken pain meds but I already know I will need to do so to keep moving and speed up recovery. I really resisted this, but if such a surgery cuts down on recurrence, it is worth it...pain or not.

@mdr3 You are writing this from the hospital? I’m glad we can be of support to you while you are going through this second surgery.

I haven’t had a lymphadectomy and so I’ll let others who have had this provide you with suggestions. I don’t take pain meds either other than the occasional acetaminophen or ibuprofen. But when I’ve had surgery I did take my pain meds as prescribed. The pain meds helped me to sleep at night so that was good.

I’m with you on following treatment recommendations that will lessen the chance of recurrence. It’s definitely worth it to listen to what the recommendations are and then make your own decision.

What was it like for you to get out of bed? Are you able to walk on your own?

It felt great to walk around! The hardest part is keeping track of where the drains are and changing position from reclining to sitting, and then standing. I will be happy to speak to anyone on the forum about this, since there is so little written about this in comparison to other gyn cancers.

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

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

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.

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.

@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?

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. . .

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!