Vulvar Cancer: Anyone else?

Thank you for your feedback. Many side effects that come & go over time!
At one time I needed to know where rest rooms were at all times when going out! That’s gotten better but still have some bowel & bladder issues. Do you experience any occasional itching or irritation in the vulvar area? I guess this is the new normal for me!
Any feedback is helpful! Thanks for listening!

Congratulations! Believe or not, the five year mark will be here for you before you know.
Ahh, yes, the secret side effects 😉. I had uncontrollable diarrhea for years. I still do occasionally. What has helped me is eating 3 meals a day, being careful of what I eat - no onions, garlic, spicy food. I haven’t been able to eat chocolate since my last chemo treatment, which has gotten easier over the years.
Have you tried pelvic floor exercises? They definitely help. You look for exercises on line or your doctor might be able to prescribe physical therapy. I really hope this helps.

Wonderful to hear positive news! I also was diagnosed with vulvar cancer stage 1b in may 2023. 32 radiation treatments & 2 chemo (was supposed to have 5 but had a set back from it). No surgeries. I’ve been cancer free since August 2023. I’ve had late side effects that no one tells you about ! Mostly in the pelvic & bowel areas. Did you experience any? Looking forward to hearing from you!

Hi all, I was diagnosed with vulvar cancer after a biopsy in April 2018. I had 8 chemo sessions and 35 radiation treatment, finishing in December 2018. I had a partial vulvectomy in 2019. I had internal exams monthly graduating to every six months. As of this past October, I hit 5 years cancer free, I have finally hit the 1 year appointment mark!
I realize how fortunate I’ve been. There has definitely been some big bumps in my cancer journey and it wasn’t easy, but I’m still here.
Support and this forum are extremely helpful. If I can help anyone going through this journey, please let me know. Good health and good luck.

Finding information about Paget's of the Vulva is difficult. Pain and itching is constant. A dermatologist suggested Desitin cream and it has been helpful.

I now have a recurrence of Paget's of the Vulva. Surgery the first time. Imiquimod cream for the second. I am afraid and depressed
I am 74. Any information would really be appreciated!

Hi @blonde69, I've been thinking about you. How did the appointment go last week? What did you learn? How are you doing?

Thank you for sharing. I was diagnosed in November of 22 had surgery partial vulvectomy
Im quite sure that i have had this for 5 years before being diagnosed it was not in my lymph nodes the Dr’s have checked all my organs as well I read in a medical journal report that 25% of us have cancer someplace else. So far none detected. I wonder about immune therapy.
I see a new Dr in February and have a referral with a new Gyn/Onc that hasnt come through yet. I will post any news I have. If you search PubMed you can find a few studies on pagets. I am 59 soon to turn 60. Hang in there I will post more on my naturopathic Dr when Im not typing on my phone.

I am 67. I first noticed a growth/lesion in April 2023. I was seeing my primary care doc at that time. It took until August to get an appointment with a gynecologist. A biopsy was done and I saw a gynecologic oncologist.
I’m not sure I will ever be “free” of Paget’s as mine is invasive. As of today, it isn’t detectable anywhere else. My understanding is it could show up in other organs because it is invasive. I also am not sure if all Paget’s are invasive or not.
I haven’t sought out any dietary or naturopathic medicine yet. I am dealing with lymphedema due to sentinel lymph nodes being removed during surgery.
One step at a time. I am open to suggestions, though.
I was told the same as you as far as follow up. No scans, just a visual check.

I’m aware that vulvar cancer is considered rare so how do you find another woman who understands what you are going through? I am also a cancer survivor (endometrioid adenocarcinoma diagnosed in 2019, recurrence in 2021) so while I do not share the diagnoses that you’ve all shared in this group I do know what it feels like to be diagnosed with cancer. Who do you talk to? Who « gets » it?

I want you all to know that I appreciate each and every one of you and how you care about for another. Thank you all for deciding to come to Mayo Clinic Connect and for supporting one another.