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.

I had the radical vulvectomy as well and was just informed that my doctor is now going to remove the whole area of lymph nodes in the pelvic area. Is it painful? How long were you in the hospital? Recovery time?

I had a partial radical vulvectomy and all inguinal femoral nodes on left side removed in January 2011. Cancer had not spread to nodes. I am actually here online because daughter now has bladder cancer and I happened to see and followed this group. I would be there for any of you at anytime if you have questions. Every experience is different but I will answer any questions that pertain to me if it will help you. I had very little support because i was so embarrassed because of where my cancer was so I suffered emotionally and physically alone. I still get checked several times a year, had a nickel sized biopsy a few years back but doing ok. I have a few “The NEW ME” things but honestly i’m so grateful for my life. I wish i could just hug all of you. My heart and soul is with you.

They are free to reach out to me. Sadly, not new to it, but the first one was literally "scarring" both physically and mentally, and as problems persist, it would be nice to "speak" to people. I can't find a local "in person" group. Even mastectomies have become openly spoken about, but I feel like women's genital areas are off-limits for any kind of talk. We even talked testicular cancer when it was Lance Armstrong! Why did I not even know I HAD a vulva, considering I had dealt with endometriosis, nerve pain in utero, 2 vulvectomies, 3 laps for cervix, partial ovarian removal, etc.??? You'd think I'd be an expert. I had to read up on the topic! But nothing prepared me for being told it was no big deal, when they can only see the surface. They basically fully diagnose/remove any cancer at the moment of surgery, so they can only guess how "bad" until they actually get you under...then you have no say. I felt mutilated after my first. They said it was necessary. The second was much less traumatic and hopeful for me in the future. I was already told at my follow up today that there is new growth, but mild, so it's already coming back! But they don't touch at VIN 1, so Im basically waiting for it to grow until they have to remove again. At my rate, probably early 2023. On top of that, I hit menopause pre-50 and have some spotted bleeding 1+ after, so multiple biopsies on the uterus today. One week to worry about that one. Prayers it's no big deal. Bobette, boxermomma and wheaton, reach out if you want. - Undesirable nearly 50 singleton mom of 3 female teens here in flyover country feeling all alone in this. Seriously could use some sisterhood here.

@mezzojo How nice for you that your son is living with you. Although he is moving away in a few weeks due to his employment it’s great that you have a friend network to rally around you. Isn’t it heartwarming and frankly amazing what our friends will do for us if we just let them know?

I want to reassure you that worry is normal under these circumstances. Until I was in treatment I did the same even though I have learned mindfulness skills to lessen the worry. But it was still there. It still is.

Working remotely is a good plan. It’s isn’t helpful to “stew in worry” which is what I used to do thinking at the time that I had no choice on where my mind went. Now I realize that I can gently turn my mind back to the present and do activities that matter to me. I hope that working a few hours from home will do that for you as you await your next appointment.

Can you schedule time with friends while you wait? Maybe meet up with a friend for coffee or tea and decide ahead of time that while your friend may want to know about your health concerns that this won’t be the focus of your time together?

Hah! I've spent my life working in the church (60 years) -- so yes, I'm a prayer person, and am thankful for your prayers. You have been a great deal of help. I think I'm going to pursue having this done elsewhere. Will know more today. From what I can tell, the biopsy done at my gyn's office was insufficient (I see that "after the fact") The oncologic surgeon probably should have done another, or at the very least recognized the severity of the situation. In teaching hospitals, they use a lot of fellows in the operating room. To be honest, I really don't know who did this surgery, looking back. I, like you, trusted the system at the time. Did you have both sides done, or just one? They have me down for a bilingual, since the margin is close to the midline, and the margins weren't clear on pathology.

So sorry you are having a second surgery. It’s terribly disconcerting to go through one much less two!
I really do not know why he decided to take that many. Initially, it was supposed to be 3 or 4. I had so much faith in my surgeon and my immense faith in the Almighty, I didn’t question that decision. Surgeon did mention that he did that to be on the safe side!!?! I have been free and clear since that time. I’m five years, almost six.
I had virtually no pain from surgery. I did have pain due to the incorrect placement of catheter!! Very uncomfortable!!!
The incision in the right inguinal are was a different story. Not unbearable though. I am blessed with a high tolerance for pain. It took quite a long while for that to heal. Healing from the inside first; I thought I would never heal!
You mentioned that they had no idea what they removed was cancer? Had you not done a biopsy
on that area?
Well, we believe in prayer. What day is your surgery and I will certainly pray for you!
Guess I haven’t been much help, except for you to know that you are not alone!

Surgery a week from tomorrow, and I am anxious (mostly because communications have not been timely and complete). I've spent a good deal of time checking out other cancer centers to learn about the procedure (especially removal of the lymph nodes). But your's were all negative -- that's great! Was the size of the tumor the reason they did the inguinal node dissection? I'm having a bilateral dissection. The one tumor was less than 2 cm, but it was deeper than 1 mm. They had no idea that what they removed back in May was cancer...so next week's surgery is a second surgery: taking more and adding the dissection. Any insights you have would be most welcomed! or anyone else who has been on a similar journey with this