Hello, is there anyone else out there who has recently been diagnosed with Paget’s Disease of the nipple? I got my diagnosis 10 days ago - it was a horrible shock obviously, but in another way I’d been prepared for it, 'cos my nipple had started to change about five or six weeks beforehand.
I was originally diagnosed with 4cm lump of high grade DCIS in my left breast 9yrs ago and had lumpectomy and radiotherapy. They’ve kept following me up every year since then cos I was only 40 when I was diagnosed. My nipple has been red since the DCIS, but has recently started being a bit itchy and with little pinpricks of blood on my bras. The skin’s also been drier and scaly, and the scaliness was extending into my aerola in different directions.
Then I had my routine annual clinic follow-up 17 days ago, and they took one look at the nipple and said it looked abnormal. They biopsied it, and gave me an appt for the results clinic the following week. I spent parts of the waiting time looking up nipple eczema online, but there weren’t any examples of eczema on only one nipple - all the signs were for Paget’s disease, especially when I googled images and the photos were identical to my nipple!
I’m waiting for surgery now - it’s not desperate that I have it really quickly, but I need a simple mastectomy, with already having breast cancer history. I’m provisionally booked for the 15th October, but it’s dependant on my blood pressure. I’m 49, very physically active, and have never had blood pressure problems! I think it’s to do with how stressed I’ve been lately, with my diagnosis and also another close family member is having chemo for Non-Hodkins Lymphoma so I’ve spent a lot of this year supporting them in practical ways as well as emotionally.
What’s that phrase about if life throws you lemons… make lemonade!? Wish I could have stayed as positive as that this week. Fraid I’ve been emotional, weepy, negative etc. Not helped by being told at pre-op assessment that there was a problem on my ecg and with my blood pressure being high, they suspected I had an enlarged heart on the left side. Anyway, ct scan shows it’s ok. I’ve just started on medication for my blood pressure, and hopefully will have my surgery on the 15th Oct. I’ve been trying to keep on at work, but phoned in sick yesterday, and can’t see myself going in on Monday, or perhaps even at all this next week. I’m feeling a lot better emotionally, but my job is very busy and I have responsibility for others, so might be better for my b/p not to be at work.
I can’t wait to get rid of this left breast - sorry if that upsets anyone who’s going through having to decide between lumpectomy and mastectomy. Last time, I chose to keep my breast, but this time I want rid of it, cos it’s let me down again. I’m not going for immediate reconstruction, but I know I can have it at a later date if I change my mind.
I feel I’m being sucked into the hospital system with all the tests etc we have to have, but all the staff are lovely, especially my breast care nurse.
This is only my second post, so if any of what I’ve written rings any bells with how you are, it’d be great to see your posts here! xx