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

ooops! bilateral...shows how un-nerved I am lol!

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!

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.

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

they still want to do radiation, but waiting for results from they gyn/oncologist to see if it is in my cervix. All my doctors have been on vacation, and just waiting for the results . I put everything on hold till i get the results to see if its in my cervix, or somewhere else.

@4chickens I think that’s a different kind of cancer than squamous cell cancer that occurs in the vulva. Just as you said. I looked up squamous cell P16 and it’s a type of cancer that is HPV-related and is a kind of cervical cancer. It’s actually good news that the PET scan didn’t show any evidence of disease which means that there isn’t cancer anywhere else.

When do you see the oncologist?

MY STORY IS DO DIFFERENT HAD A LYMPH NODE REMOVED WHICH HAD CANCER FROM THE BIOPSY ( SQUAMOUS CELL P16 IN THE CERVIX WE ARE THINKING. HAD A PET SCAN IT IS NOT SHOWING ANY CANCER ANYWHERE. SO NEXT STEP TO SEE A CANCER ONCOLOGIST. WAITING RESULTS FROM AN ULTRA SOUND FROM THE BELOW AREA.

I, too, have had stage lll squamous cell ca of the vulva. It has been about three years ago. I was totally shocked, to say the least!
Fortunately, it was caught fairly early. I was sent to a wonderful doc who is a gynecological oncologist in my state.
My surgery appt was set up. I had to check into the hospital the day before the surgery.
I had ambivalent feelings about the surgery.
The surgery went without any problems, I awakened on schedule and I felt fine. The only pain that I had was from the removal of 7 I inguinal lymph nodes(which were negative). All in all the surgery was not anything like I suspected. The most pain I had for a while was the inguinal area. It took a while to heal!! Hope this is helping to you!

@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?