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

@mdr3 Thank you for correcting my error - my huge error. It’s good that there is no involvement of lymph nodes however the pathology report is that all of the cancerous tissue was not removed. Even though you have experience with this when you were diagnosed with Stage IIIc breast cancer in 2019 it does not make this any easier. You are emotionally familiar with this and figured how to cope with the earlier diagnosis. I’m guessing that those coping skills serve you well in this instance. I’ve read many personal accounts and talked to others who have been diagnosed with cancer. There is a “feeling” that the cancer will return or a primary cancer will be discovered somewhere else. As a survivor of endometrial cancer I have tried to put the cancer in my “rear view mirror” but the fear sometimes gets in my central view and in front of me. When that happens, I breathe, I notice it, and I gently move the fear away from central view.

Do you have a treatment plan from your oncologist?

Yes, the tumor board met and they have invited me back to the operating room -- isn't that nice? This time it will be a partial radical vulvectomy with removal of lymph nodes. Being a second surgery (within a short period of time) it's the only way to determine the status of the lymph nodes for sure. SLB is off the table when it is a second surgery. SLB is part of surgery when malignancy shows on biopsy (which was not the case here). They were as surprised as I was at the pathology (btw, it was the same way with the breast cancer as I recall). I may very well need further therapies, but they won't stage it until the second surgery/pathology is in. Right now it is 1B.

@mdr3. On the one hand it’s good that your case was thoroughly discussed by the specialists and came back with a recommendation. On the other hand - another surgery is not so great for you, the patient. The pathology department will need the additional tissue from this second surgery to stage you again and as you wrote you may or may not need additional treatment. I’m just repeating what you basically wrote as I often do to make sure I’m understanding everything.

As I wrote before, even though you’ve been through something similar with breast cancer and you know what to expect emotionally, it doesn’t make this any easier for you. Are you like me? Wondering when and if cancer comes back somewhere else? Always in the back of your mind?

Are you in any pain today from the previous surgery? How is the healing going? And is the next surgery scheduled? What are you doing to take care of you during this wait? Exercise, mindfulness meditation, yoga, massage, acupuncture? I learned about these as well as other modalities from an integrative medicine/functional medicine physician that can support the patient while they await or are in the middle of treatment for cancer. As a cancer survivor I do some of these. What appeals to you?

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

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

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.

@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?

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!

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.

@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?