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

I had a squamous cell carcinoma on my vulva but my issue differs from yours due to having my inguinial nodes removed during my partial radical Vulvar surgery because the scan I had before surgery showed that the cancer had already spread into those nodes. I started radiation last week because they are hoping to keep it from coming back.....I have the wild one and I'm worried...hopeful enough to look into trying out some dietary theories I have run across yet, realistic enough to know that I won't be here forever. Good luck!

God bless you! I was diagnosed with vulva cancer about 2-3 years ago. Thankfully it was caught in time. I went through the surgery with flying colors by a gynecological oncologist in my state. The surgery was radical, I had seven lymph nodes removed, all of which were negative for malignancy. I did not require any chemo or radiation. I have been cancer free since that time and am eternally grateful to my fantastic surgeon!!!!

Just got the pathology report (at my urging after 11 days): it is invasive squamous cell carcinoma, CD31 revealed no lymphovascular invasion. I think this was a surprise to everyone but me. As I always said, something that hurt that much HAD to be something, especially since the pain ended the day it was removed. Not clear from the report whether the margins are clear. Meet with surgeon in about a week. Well at least I know. I'm 73 and this happened fast. Was symptomatic from beginning of March on.

@mdr3 I share in your frustration by how long it took for you to get the pathology report. It’s such a long time to wait considering the reason for your biopsy. It’s good news that the margins are clear and you will meet with your surgeon in a week or so. How are you feeling today?

Thank you for writing! Margin does not appear to be clear: "Invasive SCC present at a tissue edge" which (upon my look-up) means the margin, in fact, was not clear. There does not appear to be any lymph node involvement -- but I am prepared should they suggest further testing on that as well. I feel well physically, but of course, would have hoped for a better report. It is a relief, however, to finally know the truth. Have been in this spot before -- am a Stage IIIc breast cancer survivor (as of Oct. 2019). The cancer was hiding then too. Would love to hear from others about their treatment paths for a similar diagnosis.

Yes, the skill of the surgeon is where it's at with this! So glad you are doing well! Thank you for sharing your story!

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.

@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?

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 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?