Has anyone had Paget's disease of the vulva?

Hi @juju67, any update on the plan for radiation? How are you doing?

Hi @colleenyoung , I have an appointment with my gynecologic oncologist next week to get the results of the pathological findings of the lymph nodes that were removed during surgery.
I am recovering well, I think. Pain is manageable with OTC medication. Incisions are not quite healed, but looking much better. I was able to sleep the entire night in bed last night for the first time since surgery!
I am getting there! Hoping for some sunshine tomorrow. Been dark and rainy here the last 3 days.
Thank you for inquiring. I appreciate you asking.

I had an appointment with my gynecologic oncologist yesterday. Unfortunately, the incision at the base of the vagina has opened up. It happens in 40 percent of this type of surgeries. He removed a few internal stitches as he said they are very hard on the surrounding skin and tend to cause more problems. I’m having quite a bit of pain now, which he told me I would. So not sitting for long. Laying in bed, letting the healing take place.

Radiation will not take place until all incisions are healed. The drains and lymph node sites are almost healed. Doctor said he would estimate about 2 months before radiation could start. It will be approximately 5 days a week for 6 weeks once it starts. Still no pathology results from the lymph nodes as the radiologist my doctor uses has been unavailable for 2 weeks.

Now it is all about healing. I feel like I took two steps forward and one step backward this last week. I was feeling good and then the incision broke open! This too shall pass in time.

The weather here in Michigan has been beautiful this week! Seems more summer like than autumn. I have been enjoying it immensely.

Thinking of you and praying for you for healing. It's so hard. At least we are no longer alone with this. This kitty, Lunda, is the 'owner' of a country store in small town Quebec. So laid back and lovely. And bees were busy on Michaelmas daisies.

Such a beautiful cat! The flowers are gorgeous! I will be happy when I can garden again.
Thank you for your thoughts and prayers.

Her name is Luna - I misspelled. 😉 She was so sweet and gentle and loving. Totally laid back. Which I should be mor often 😉

Good news, bad news from my oncologist. The lymph nodes that were removed showed cancer but only at the microscopic level. All the margins tested negative so by doing a radical vulvectomy they removed all the cancer cells in/on the vulva. Due to these findings, I will not have to have radiation at this time. Yay! However, it could reappear in the future. The doctor said I will have to be monitored every three months going forward.

The healing is going well. Still having some pain/discomfort when sitting for a while. Still am not able to lift over 5 pounds or do any strenuous activities. Trying to get my energy level back up to where it was. Finding I need a nap every day now.

I have an appointment in December for a follow up with the oncologist.

Hope you ladies are doing well.

So glad to hear the positive outcome. I hope you have many years to enjoy life before you need further treatment. I believe the 3 month monitoring is the norm & will help you to "catch" any further developments while you still can control the progress of Paget's.
As I have reported, I have had 6 surgeries, and as miserable as it is to have the surgery, I have survived 10 years thanks to this early detection & prevention.
Good luck

Thank you! Your comment gives me hope.
Good luck to you as well.

I had surgery last December 22,2022 for Pagets of the vulva. I believe I have probably had it for 5-7 years prior and didn't know it and my Gyn didn't catch it. I had an itchy spot but it was intermittent then Covid happened and my Gyn retired and I was at a loss for where to go. Finally found a new Gyn and remembered to tell her about the itch. After a biopsy it was confirmed. That's when the whirlwind started. I have had one check up in June 2023 and go tomorrow for my second check up. I am pretty sure I have it in another area but really don't want another surgery it was awful. I am thinking of a second opinion or the cream, I am open to anyone's thoughts I have felt so alone. I will post about my appointment but I think I have lost confidence in the current Dr.