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

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?

My adult son lives with me, so he’s been taking me to the doctor’s appointments. Unfortunately, he is moving away for his job in a few weeks. I do have a network of friends who have pitched in as well. I was really touched at how many people rallied around me when I got my diagnosis.

Right now, I’m just waiting for my appointment on Friday to discuss the plan going forward. I was having some kind of heavy bleeding which unnerved me, but the doctor got me in right away and said everything was ok, and it was likely just from the stitches dissolving.

I’ve been handling things pretty well, but now that I’m feeling better physically, I’m worrying more about what’s coming. Even though I still have a couple of weeks left on my medical leave, I will probably log in to work from home for a couple of hours, just to give me something else to think about.

Thank you for your kind words. I forgot your questions about coping. Unfortunately I had to find out all this stuff on the patient portal. No one called me. But had a good meeting with surgeon Thursday (my daughter on speaker) and he thinks I should have the second surgery as soon as I can. I agree...I just want to get it over with. I am an organist/choir director (60 years at this) and own a fishing equipment business which keeps me VERY busy. What I miss most is the longer walks I'm accustomed to taking (had to be put on hold during the recovery) but no pain, so that's a good thing. I want to get back to my walking regimen prior to this surgery....not a lot of time. I admire your activities!! Stay well

@mdr3. What is SLB stand for? Sentinel node biopsy?