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

@kate14
Thank you for your candid comments. I have a scan next week and surgery several days later. Am a severe claustrophobic. Getting a few pills for "anxiety". You are correct in that there doesn't seem to be much information from anyone regarding what side effects devastate. My hospital "team" has been slow to support. Scared.

Pet scan and surgery three days later. Scared. Claustrophobic. Not much help from care "team" so feel alone and frustrated.

I too had claustrophobia...my doc requested sedation.

I was diagnosed with invasive squamous cell carcinoma of the vulva that is not hpv related. I had a wide radical excision of the vulva on March 3 and removal of sentinel lymph nodes on both sides. . At that time they said the margins were clear and there was no sign of more cancer. Then on May 20 I had surgery on the left side of the vulva due to differentiated Vulvar intraepithelial neoplasia grade 3. I am still recovering from both. Both lower sides of the vulva are gone. That does not bother me as much as the pain. And the fact that it can recur. I spend too much time worrying and crying. I know it will get better once I can sit down normally and get feeling back down there. I talked with a hospital chaplain and that really helped.

I am so sorry for the pain you are currently experiencing. I had a vulvar biopsy a few months ago (It was benign in my case) but the recovery was a bit unpleasant so I can only imagine what you are going through.

@my4gratefuls Welcome to our Gynecological Cancers support group. As you've probably read here we have many members who have had vulvar surgery because of a cancer diagnosis. My cancer diagnosis was endometrioid adenocarcinoma (uterine cancer) and that first brought me here to Mayo Clinic Connect. Like many of us I had next to no knowledge about the anatomy and physiology of our pelvic regions. Through this support group I've learned information I would get otherwise and in turn have spent considerable effort and time reading about gynecological cancers.

When I think about what you are experiencing I think of the many, many nerve endings in the vulva which are there for good reason. And yet, when a woman has something as frightening as what you are experiencing especially after surgery those nerve endings will cause a tremendous amount of pain.

Here is something I've learned about pain and anxiety/depression. There is a direct relationship between pain and how we feel emotionally. So, the time you spend worrying and crying is likely due not only to your diagnosis but also the pain you are enduring. I don't see how you can a moment's rest when you are so very uncomfortable with the pain.

I'm relieved for you that talking with the hospital chaplain helped. Do you have a mental health provider you work with or can talk with? I'd recommend a psychologist who specializes in pain. The pain you describe I think is still in the "postacute" phase and so hopefully will get less over time. but in the meantime the pain is disrupting your life in a major way. The psychologist will listen and help you with the anxiety and can provide you with therapy and referrals to address the pain so that the anxiety and sadness as well the pain you experience will be reduced.

Here is an article that explain this.

Postoperative pain severity and the association with anxiety, depression, and sleep quality

-- https://pmc.ncbi.nlm.nih.gov/articles/PMC10955440/

Would you like to talk with the chaplain or your surgeon about a referral to address you postacute pain and anxiety?

I have an appointment set up for therapy in a week.

@my4gratefuls
I’m very sorry to hear you’re dealing with this and it sounds so painful. I hope your care team can find something to help with the pain because that would reduce anxiety.

Several years ago, I had uterine cancer and had a total hysterectomy. Now I have squamous cell carcinoma of the vulva, but I don’t know if it’s HPV related or not. May 8th, I had the surgery to remove the left side labial skin and the sentinel lymph nodes on both sides. Because my tumor was so close to my urethra, they could not remove as much skin as they wanted without compromising my ability to urinate normally. The margin came back negative, but that margin was less than 1 mm, which is not enough to be confident. Also, the lymph node on the left side was positive. My oncologist recommends not taking out my lymph nodes on the left side, but having half dose chemo and radiation on the vulva and lymph nodes. I am going to the James Cancer Center in Columbus, Ohio for a second opinion this week.

I’m a little nervous about not taking out the lymph nodes, but I know the chance of lymphedema increases greatly when they are removed and that chance increases more when the area is radiated. I have a big decision to make. My oncologist said the studies that show lymph node removal gets slightly better results, but that’s with using a very low-dose radiation. He says the radiation I would receive is much higher and so the results are nearly the same without the greater chance of lymphedema.
Either way, I will be receiving radiation and chemo, and I am very concerned about the side effects of the radiation on that delicate part of my body. I fear very tender skin and tightening and thickening. Does anyone have any experience about that?

@uniqueibe I took Ativan for "anxiety " as wait too long for sedation. Anxiety their word.

@my4gratefuls Thank you for sharing. I hope you connect with your therapist and will feel that the therapist listens to you. For me, that's key in therapy.