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

Posted by bobette1 @bobette1, Oct 10, 2022

Just diagnosed a week ago. Who is out there with this cancer? Looking for advise, tips and what to expect as I start my journey. TIA

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

I had a similar experience with the lymph nodes and had surgery on June 10. My doctor told me that there is no chemotherapy that is effective for that and referred me to have Proton therapy, which I understand can be used even though you have had radiation in the same area. I have been approved but cannot have it until the J-P drain is removed. Hopefully that will happen soon but I still have almost 100 cc a day drainage a day and I think it has to be 33 cc or less a day. Good luck to you.

REPLY
@shirleyj1065063

(following my timeline of events.... ) I am (now 58yrs old)-- I found out I had squamous cell carcinoma-- vulvar cancer in Feb '23. (I have since reconfigured my whole diet & cut cetain foods from my life, I've started eating more fresh fruits & veggies, less candies & sweets. Cancer thrives on sugar!! That being msaid-->> I had a radical vulvectomy in Apr '23-- 3 of 5 lymph nodes in my L groin were involved (the R 1s were checked, & they were neg) My clitoris was totally involved & both labia had involvement. I started with 2 large lesions (1 on my left labia & 1 right inside the vaginal canal). In May '23, 2 more lymph nodes came up positive, so I went back in back in for more surgery. In June '23-- I filed for SSDI, I started 33 rounds of radiation & 7 chemo treatments. (The radiation towards the end of treatment-- in Sept, was murder on my skin). I ended up quitting my job & picked up private Ins., through the market place. I got approved for Medicaid in Dec '23., & finally started getting SSDI in Nov. The pet scans & CT scan were going fine, into Nov '23. A radiologist read the pet scan wrong & missed a nodule that popped up on my pelvic groin area, but another radiologist saw it. At the end of Dec '23, I had a pinkie-nail sized pus colored lesion on the L side of my pelvic pooch area . My oncologist on Jan 6, '24 dismissed it from being another cancer spot & said they'd watch the area. By the end of Jan '24, I had a gaping hole almost next to where my L used to be. (They're said it was necrotic/tissue skin from the radiation--) the color & the smell-- you'd think there was an infection. I am on 3 different pain meds (ms contin-- oxycodone, & tramadol, are for break thru pain& I also take tylenol & Ibuprofen as needed for any other break thru pain, I may have). In Apr '24 I went back in for another surgery. To clean up/remove more skin cancer that reappeared. The cancer is staying in the pelvic/vaginal region ( no organs are currently involved)-- I was approved for Keytruda immunotherapy treatments I started those in March, & was just approved to also start having chemo again along with Keytruda. (Along with this regimen of treatment-- I started having neuropathy related feet/knee/joint pain) (which none of the pain meds I'm currently on has helped with the neuropathy-- so they added gabapentin... ) (Oh, & my Reg private Insurance had denied the Keytruda, so I had to go thru Medicaid, & got all this approved. My Oncologist Team has been amazing treatment wise, getting everything approved to move forward)... all I can say is I have cancer. Cancer Sucks!! But if you don't keep your head afloat, & Stay Positive !!

Jump to this post

@shirleyj1065063 Oh, my goodness. You are been through so much and are offering supports to others here. Welcome to Mayo Clinic Connect and thank you for posting here.

You are a testament to how important an excellent oncology team is to diagnosis and treatment. I get so angry when I learn about yet another denial for treatment from insurance as if we are all in this for some sort of cosmetic treatment to make lips look fuller on our face. I'm relieved to know that your oncology team follows up and pushes for your treatment recommendations. It's time consuming for them and likely different for each insurance company but they do it. For you and for their patients.

When will you start the Keytruda?

REPLY

Dear Shirley: I am stunned to read all you have gone through so far! You are obviously strong and have done everything to get you to fight this surreal cancer that not even medical staff know how to treat! It is like we are guinea pigs for EMPD. Together we will stay strong. I have an August 1 visual appointment with my gynecologist. She is the one who is discovering all the spots and both sides of the vulva. My treatment so far: at each manifestation I use Imiquimod topical treatment. I have worked on lessening the intense scratching and burning. I am adding you in my prayers.

REPLY
@caddo

I had modified radical vulvectomy on October 26, 2023, with 1 right groin lymph node testing positive for cancer. I then had 30 sessions of radiation on the vulvar area and both groins, ending on February 7, 2024. The PET scan last month showed 2 right groin lymph nodes are cancerous. One is fairly large and is growing rapidly. The cancerous lymph nodes were removed June 10. My post op appointment is on June 25. Obviously I cannot have radiation in the same groin area again , so I guess the next step is chemotherapy. Has anyone else had this experience?

Jump to this post

(following my timeline of events.... ) I am (now 58yrs old)-- I found out I had squamous cell carcinoma-- vulvar cancer in Feb '23. (I have since reconfigured my whole diet & cut cetain foods from my life, I've started eating more fresh fruits & veggies, less candies & sweets. Cancer thrives on sugar!! That being msaid-->> I had a radical vulvectomy in Apr '23-- 3 of 5 lymph nodes in my L groin were involved (the R 1s were checked, & they were neg) My clitoris was totally involved & both labia had involvement. I started with 2 large lesions (1 on my left labia & 1 right inside the vaginal canal). In May '23, 2 more lymph nodes came up positive, so I went back in back in for more surgery. In June '23-- I filed for SSDI, I started 33 rounds of radiation & 7 chemo treatments. (The radiation towards the end of treatment-- in Sept, was murder on my skin). I ended up quitting my job & picked up private Ins., through the market place. I got approved for Medicaid in Dec '23., & finally started getting SSDI in Nov. The pet scans & CT scan were going fine, into Nov '23. A radiologist read the pet scan wrong & missed a nodule that popped up on my pelvic groin area, but another radiologist saw it. At the end of Dec '23, I had a pinkie-nail sized pus colored lesion on the L side of my pelvic pooch area . My oncologist on Jan 6, '24 dismissed it from being another cancer spot & said they'd watch the area. By the end of Jan '24, I had a gaping hole almost next to where my L used to be. (They're said it was necrotic/tissue skin from the radiation--) the color & the smell-- you'd think there was an infection. I am on 3 different pain meds (ms contin-- oxycodone, & tramadol, are for break thru pain& I also take tylenol & Ibuprofen as needed for any other break thru pain, I may have). In Apr '24 I went back in for another surgery. To clean up/remove more skin cancer that reappeared. The cancer is staying in the pelvic/vaginal region ( no organs are currently involved)-- I was approved for Keytruda immunotherapy treatments I started those in March, & was just approved to also start having chemo again along with Keytruda. (Along with this regimen of treatment-- I started having neuropathy related feet/knee/joint pain) (which none of the pain meds I'm currently on has helped with the neuropathy-- so they added gabapentin... ) (Oh, & my Reg private Insurance had denied the Keytruda, so I had to go thru Medicaid, & got all this approved. My Oncologist Team has been amazing treatment wise, getting everything approved to move forward)... all I can say is I have cancer. Cancer Sucks!! But if you don't keep your head afloat, & Stay Positive !!

REPLY
@wilted

I have had a radical vulvectomy, chemo therapy and 33 radiation treatments and 3 simultaneous infections from the treatment that resulted in a 3 day hospital stay. I am waiting for a scan of my lymph nodes to see if they got all the cancer cells, or if I need further surgery. My diagnosis is squamous cell cancer 3 b. I am struggling with pain from the radiation and finding it hard to control without opioids that I would rather not take. I will post my scan results when I get them and then deal with the next chapter of this aggressive disease. I wish you the best on your journey.

Jump to this post

Hi @wilted, I hope you saw the helpful reply from @pam6426.

Did you get the results of your scan yet? How are you doing?

REPLY

Hi, I had this problem. My GYN doctor removed the growth with local anesthetic and mild sedation.
I had very little pain and was able to get around very easily. I had a little irritation and burning when I had to urinate. That subsided within
several days. I was checked 3 months later and there was no evidence of recurrence of any cancer growth.

REPLY

I have had a radical vulvectomy, chemo therapy and 33 radiation treatments and 3 simultaneous infections from the treatment that resulted in a 3 day hospital stay. I am waiting for a scan of my lymph nodes to see if they got all the cancer cells, or if I need further surgery. My diagnosis is squamous cell cancer 3 b. I am struggling with pain from the radiation and finding it hard to control without opioids that I would rather not take. I will post my scan results when I get them and then deal with the next chapter of this aggressive disease. I wish you the best on your journey.

REPLY

Hello: You are very diligent with the protocol to follow to stop the progression. You are proactive and that is great. My oncologist told me that chemotherapy would eventually be next step after a vulvectomy full or partial. She told me I have manifestations all around so that it would be difficult to excise. She does robot surgery. Right now at each manifestation I use Imiquimod who fixes the spots but I don't know what it really means. When I freaked out and told her I did not want to experience chemo, she said that it would be the ultimate treatment and since I am also proactive with Kaiser, I need not worry. But I worry nevertheless. Please keep us updated and know that we are sending you our very best wishes. We are in this battle all together. Hugs

REPLY

I had modified radical vulvectomy on October 26, 2023, with 1 right groin lymph node testing positive for cancer. I then had 30 sessions of radiation on the vulvar area and both groins, ending on February 7, 2024. The PET scan last month showed 2 right groin lymph nodes are cancerous. One is fairly large and is growing rapidly. The cancerous lymph nodes were removed June 10. My post op appointment is on June 25. Obviously I cannot have radiation in the same groin area again , so I guess the next step is chemotherapy. Has anyone else had this experience?

REPLY
@yolanda1954

I had this cancer diagnosed on January 4, I had surgery on January 17 and the best advice I can give you is that the surgery be performed by your specialist and a plastic surgeon to reconstruct the area.

Jump to this post

Welcome, @yolanda1954. Have you had any further treatment after surgery? How is your recovery going?

REPLY
Please sign in or register to post a reply.