Has anyone had Paget's disease of the vulva?

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

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

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.

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.

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.

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

I have positive lymph node involvement on one side of my groin for sure. Waiting on pathology report to see if the other side is involved as well. Due to this, the surgeon indicated radiation would need to happen. How much and how often is yet to be determined. I am, for the most part, calm. I can’t not have Pagets so I am doing whatever is necessary to get rid of what I do have.
Thank you for your good wishes.

Relief to have drains gone. I had them with my mastectomy. Could enjoy my shower afterward. Simple joys help.
Doesn’t remove pain & anxiety though, but you sound relatively calm. I applaud you.
Could be dumb question, but what will they radiate? You had clear margins, I believe, & Paget’s skin removed in surgery. Did lymph nodes indicate metastic location? Fortunately for me, after 10 years, I seem breast cancer free. I go to oncologist on October 10 after my last vulva surgery on May 2. No clear margins then. Not sure what comes next. Going to try using Aldara cream again. Not up for more surgery this soon.
Take care. I’m trying to enjoy each day, especially the lovely Fall weather here in Southern US.
BTW: Ignore any questions that you don’t wish to share. I wish you all the best.

I had my drains removed and the stitches out on Thursday. I do have less pain and a bit more mobility, so I am feeling better. I have an appointment the first week of October to discuss what comes next. Because there are lymph nodes involved, radiation is a given. I won’t know anything further until my next appointment.
I hope you ladies are doing well.

I started having symptoms in late April of this year. My GP thought it might be a bacterial infection and treated with a 10 day course of antibiotics. When that didn’t help she referred me to a gynecologist. It took 9 weeks to get an appointment! He did a biopsy and it cam back invasive Pagets. He then referred me to a gynecologic oncologist and I saw him within a week. I then had 2 more biopsies from different areas and all showed invasive Pagets. I was scheduled for surgery 3 weeks later. A long way of saying I have had it for approximately 6 months total.
It hasn’t spread, that they can see, to the bladder, colon or kidneys. I will need to have a colonoscopy and other tests to see if it is inside any of those organs. I have had regular colonoscopies for years and nothing has ever shown up. I’m 67.