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

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.

@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 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.

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.

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!

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

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!

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.

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!

Thank you!