Vulvar Cancer: Anyone else?

Every 6 months currently I am very disappointed with my current Dr and the lack of knowledge or perhaps being unwilling to admit they know nothing but couldn’t wait to do surgery
I have an appointment with a highly regarded urologist Dr Kelly Casperson. Who I hope can refer me to a better Dr

I also have Paget’s of the vulva. I had a radical vulvectomy in September. Yes, it does come back. The cancer was completely removed with clear margins in my case. I am in Michigan and see a doctor at Karmanos Cancer Center.

I am currently on a 6 mo check up with the Gyn/Onc but there is no scan. Its a visual look which I must say I havent a lot of confidence in.
I really feel as if Im in a rowboat with no oars.

Juju67
I am so thankful for you. Thank you for responding
May I ask how long you have had Pagets and your age? It is so helpful to find someone else and have some support.
How long have you been free from the pagets or do you think it will come back?
Do you do any dietary measures or naturopathic medicine?

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.

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.

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.

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