Hopefully someone will respond to your Post who has a similar experience to yours.
I don't know much about Paget's of the breast, apart from it's another way this flipping disease shows itself. Anyway, might not be much use but I have attached a link to the info on the Breast Cancer Now site. You can also download the booklet from there.
I can relate to the fears and all the scenarios that may get played out over and over again to torture you in the early hours. You have also been through a bit of a hike to get to the diagnosis which I should not think helps matters.
Do you have anyone to talk to directly for support? A partner, close friend, breast care nurse, Cancer Support Centre like Maggies, or ring up the nurses on the helpline here. It can help to share your fears and concerns and reduce feelings that you are on your own with this.
Just going from what you have written, you do not seem to have an idea of a treatment plan. Did they not give you an idea of the likely treatment plan from the biopsy results etc? It may be that you did not want too much information about the cancer, which some people don't. If you do want more information, then call your breast care nurse/team and ask them. They should be giving you all the information that you wish to have. It may also assist in you feeling more in control of the situation.
I really wish you all the very best Jk, and hope your next appointment goes well
Chick 🐥 x
I had a punch biopsy 3 weeks ago to test for Paget’s. Results came back confirming Paget’s disease. I’ve been having symptoms for 18 months. I’ve had countless doctors appointments. Was even seen at breast clinic & was told discharge was nothing to worry about. Gp treated as contact dermatitis or excema when these treatments didn’t work referred me to a dermatologist who I waited almost 4 months to see. Dermatologist took one look & said I need a referral to breast clinic for a biopsy for Paget’s. So back to doctors for referral which thankfully I was seen within 10 days. Then the whirlwind began. Results were back within a week & a week later had a central wide local excision. A week on from my surgery and & I am slowly going out of my mind with worry. I keep waking in the night in a panic that I’m going to die & leave my children. I know I’m being irrational but the thoughts keep creeping in. Another week to wait to get next results & have dressing removed. Will I likely need to have radiotherapy too? Sorry for the long rambling post just needed to vent to people who will understand my fears.