Anyone have invasive squamous cell carcinoma of the vulva?

Mine was not hpv related. Mine started with lichen sclerosis which I had for years but didn’t know it!
Diagnosed with vulvar cancer in may 2023.
Do you have any late side effects ?

I was diagnosed today with invasive 3mm deep squamous cell carcinoma of the vulva and vagina. I’m freaked out. It is HPV related.

Don’t freak out. It is a difficult diagnosis to accept but you will get through this! I had the same cancer one year ago and treated with 33 rounds of radiation, no chemo. Surgery to remove the Spot was not fun, I still don’t wear underwear but feel fine now. I chose to not tell anybody because I don’t like the constant questions and overblown sympathy. But that’s just me you may appreciate support from your loved ones. One year from now you will look back at this time as a bad dream and you will move on!

@justbexlo Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. You will get a lot of support here in this Discussion group. I can imagine how worried and frightened you are after getting this diagnosis. I was diagnosed with endometrial cancer (endometroid adenocarcinoma) in 2019. When my doctor called me I could barely understand what he said after I heard the word "cancer". I then spent a weekend of worrying until I saw my doctor again to start planning the referral for treatment. I actually began to feel less anxious once I had the appointment scheduled with the gyn/oncologist and knew more about the cancer as well as what she planned for treatment. In my case that was a radical hysterectomy with removal of uterus, fallopian tubes, ovaries, and cervix.

Here are two websites to read that can offer more information:

Cleveland Clinic: Vulvar Cancer:

--https://my.clevelandclinic.org/health/diseases/6220-vulvar-cancer

Mayo Clinic: Vulvar Cancer

-- https://www.mayoclinic.org/diseases-conditions/vulvar-cancer/symptoms-causes/syc-20368051

When do you see your doctor again to discuss next steps?

I have an appointment with urology today and gyn/onc on Tuesday. I'm scheduled for a PET scan a week from Tuesday.

I've been through the radical hysterectomy due to endometriosis and fibroids. I was told by my doctors then not to worry about "down there." Much of my freak out is due to my mother who passed away in March 2023. She had uterine carcinosarcoma and was dead a month after diagnosis. I get that this is different but it is just playing out so similar.

@justbexlo Your appointments following the diagnosis of just yesterday (do I have that right?) are coming quickly. That was the same for me. I went from diagnosis to appointments and then on to the hysterectomy in less than 2 weeks.

I am so sorry about your mother. That is such a loss for you and it happened very quickly.

You are meeting with the gyn/oncologist on Tuesday so may I recommend that you talk with the doctor about your mother's diagnosis? Her diagnosis is very different than yours although perhaps the rapidness of the diagnosis to treatment feels very similar. While your diagnosis and that of your mother may not be similar your emotions right now are very tied into the loss of your mother.

I'm surprised that a doctor would say that there is nothing to worry about "down there" after your radical hysterectomy. I suppose that could mean the removal of the uterus but that doesn't exclude other "parts" of your body. I asked my medical provider that I see every 6 months (previously every 4 months) about the practice of pelvic and external exams. She does a very thorough exam externally and internally. I've learned, though, from others here on Mayo Clinic Connect that other women do not receive this thoroughness. I find this puzzling.

Will you please come back after your appointments in urology and gyn/oncology and let me know what you find out?

Scar tissue, lymphedema. I was diagnosed in 2014.

The key is radiation. I also had chemo. The scary part is detection. I found mine myself. It was stage 3 already.

@westnp1 what symptoms did you have, that led to detection of your cancer?

@smmontano, yes that does make sense. I'm glad that they are able to go back in to get clear margins. Well, I'm not sure that "glad" is the right word. But that is good that that is an option. How is recovery going? When will the next procedure be scheduled?