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

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?

@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?

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 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?

@mezzojo Waiting is very difficult. I am hoping you have more information next week after the tumor board meeting and your appointment with your regular oncologist.

How truly heartbreaking that you lost your husband to cancer 5 years ago. You certainly do know how bad things can get. I’m so sorry for your loss.

Do you children or grandchildren nearby who can support you through this? Other relatives or close friends. Is there someone you can take with you to your appointment next Friday? An extra set of “ears” is helpful and the presence of another person close to you can be soothing. I go to my appointments with a list of questions and concerns and so does my partner who comes with me. For the most part, much of what we’ve each written down is answered but it’s good to think about ahead of time.

You are under medical care right now and in less pain since the staples and drains were removed. I find that when I’m “under care” and there is a plan like you’ve outlined I feel better.

How are you feeling today?

Thanks for your reply. I saw the doctor filling in for my oncologist today. He removed the staples and drains from where they removed the lymph nodes. He also told me that my case is on the tumor board scheduled for next Tuesday, and I see my regular oncologist on Friday.

The waiting is difficult, but I feel so much better without the staples and drains that I’m doing ok. This whole experience has been tough. I lost my husband to lung cancer five years ago, so I know how bad things can be. Fortunately there has been no evidence of metastasis in my case, but I’ll feel much better once we have a path forward.

@mezzojo Getting a diagnosis of cancer is frightening and then waiting for the pathology report is equally so. How are you feeling about all of that since your surgery two weeks ago.

It’s very encouraging that your results will be discussed at tumor board. Your oncologist can then get the recommendations from other medical professionals where they will discuss and come up with the best path forward for you.

Is your appointment today with the doctor who is filling in? I’m thinking that this doctor will do a physical exam to make sure you are healing as expected. I’m also hopeful that he will be able to provide you with more information or at least the status on the tumor board discussion.

I’m sending you positive energy from afar. Would you please come back here and let me know how your appointment goes today?

Hi all. I had surgery two weeks ago to remove two areas of vulvar squamous carcinoma. They also removed lymph nodes and found no cancer in them, which is good news, but the pathology report showed differentiated vulvar intraepithelial neoplasia in the margins of one area, so they are still not sure about whether I will need radiation. They need to bring the case up at their tumor board and my oncologist’s wife has a baby last week, so things have been a bit delayed. I see the doctor filling in for him tomorrow, so hopefully I will have more info then.