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

Hi there! Thanks for responding!

This is a new thing thats happened, and I'm going to see my doc in a few days, so I'll be asking them then.
I'm assuming it's because the skin is still so new that it just breaks down far easier than normal. But It's still frightening. I was just wondering if it had happened to anyone else? The whole area is almost alien to me now, it's numb, the skin is weird feeling, and let's just say it s like I haven't hit puberty yet.

Thanks everyone for being there for us all, it's such a specific cancer, and it's nice to have others to talk to that have been through the same kind of thing.

Hi Liz. I’m still very early in the process so I can’t really comment on long term side effects. Did you talk to your doctor about the bleeding? I was having an issue with some residual bleeding and they recommended that I start using the silvadene cream that they gave me post op. It seems to have done the trick.

Good luck with your recovery.

Hi, my name is Liz, and I'm from Canada. Here's my story.

I was diagnosed with this cancer in March 2022. It was a massive outer tumor. It started at the back of the vulva, and went right back to the anal sphincter. It was a very quick growing tumor, and incredibly painful. I went to Juravinski Hospital for my treatment, which began with Lymph node removal (half of them in the groin only. It had begun to spread there), and then 30 rounds of radiation, and 6 rounds of Chemo. Also wound therapy, since the back of my thighs and buttocks were badly burnt from the radiation.

I found out in December of 2022 that I was tumor free. I was told that the aggressive tumors usually respond well to aggressive treatment, so I guess I am a lucky S.O.B. My treatments ended in September of 2022. So it's been 10 months since they ended. I've found that I'm still incredibly tired, and nauseous, and was wondering if that was the same for anyone else? I returned to work (retail) in April 2023, and can still only manage 2 4 hour shifts before I'm completely wiped out.

I do have some issues I was wondering of anyone else is having. I find that my skin down there is incredibly delicate now, and even wiping with a bit too much pressure will make the skin bleed. Is this normal for anyone else?

Any thoughts or responses are appreciated. I'm doing as well as can be expected emotionally (still angry, anxious, and frustrated) but the physical symptoms are whats bothering me right now.

Thank you!

I am so happy to learn the great news regarding second surgery. You certainly have had a long road, however, you finally have a clear report! You had 16 nodes removed?! Wow! Like I mentioned to you before, those incisions will require good attention. They will be slow to heal because they heal from inside out. I didn’t think mine would ever heal!!
Once again, happy for your clear report. Sorry for your pain. Will pray for your quickness recovery!

I started radiation treatment this week. So far so good, but I’m curious if anyone has any suggestions for how to deal with the side effects.

That sounds about like what they were looking for with my drains, too. However, they removed one before it was below that level because it was pulling out on its own. I can empathize with not being a back sleeper. I had to use pillows to prop me up at night so I wouldn’t roll over. That first night without my drains was a dream!

Such an encouraging message, thank you! I am grateful for a clean pathology: worth any of this current pain and maintenance.

MDR3,
Yes, sounds right, you want the cc’s low. You are doing a great job of hanging in there lady!! Soon they will be removed and this will be in your rear view mirror. You are right on, tubes/bags are doing a very important job to drain lymph. (I ended up on antibiotics too but it did take care of it) And i barely have any lymphedema, very mild and very controlled.
Im thinking of you and So impressed with your strength during a very difficult time!

Thank you so much. I have one on either side; the left (the one that has hurt from the start) has redness so I'm on antibiotics as a safeguard. They are both troublesome, but doing their job. 3 week post-op visit is on August 3 with hopefully drain removal as well. Surgeon says each one has to be under 20 cc for 24 hours to be removed: almost there. Does that sound about right to everyone? They are pinching all the time unless I take Advil. I am not a back sleeper so having these have caused all kinds of soreness, aches and headaches that I wasn't counting on. I certainly appreciate the support I have gotten from everyone on this site.