Paget's disease

Hello everyone. I’ve used this forum in the past when I was suspected of having BC, and when my mother was in the terminal stages, and everyone was very helpful, so I’m hoping you can help me again.

After many stops and starts, my partner has, after two years of appointments, been diagnosed with Paget’s in one breast. A very recent mammogram and ultrasound showed nothing; the diagnosis was made by a biopsy of the affected skin. A mastectomy has been recommended, largely because she has a blood clotting disorder and the surgeon does not want to have to go back for a second op in the future! (Both she and I are happy with this as it does seem more ‘definite’, somehow.) During the op the sentinal node will be biopsied.

My question is this: bearing in mind the clear mammogram and ultrasound, am I right in thinking that there is unlikely to have been any spread, or am I falsely reassuring myself?

Thank you SO much for reading this.

Sass xx

Hi Sass
I also had pagets disease. I had a mastectomy and recon. 4 lymph nodes were taken and they were all clear. I had no spread and my cancer was non invasive. I do no need chemo, rads or hormone therapy and the surgeon believes all the cancer has now gone.
Hope this puts your mind at ease somewhat.

deed
x

Hello Sass,

I’ve had Paget’s disease too - had my mx three weeks ago. My pre-op ultrasound was ok (they didnt do mammogram as only had one in April so too soon to do another).

I returned to clinic for results recently, and biopsies were clear, n I dont need chemo, hormone therapy etc. I’m thrilled!

I had dcis 9yrs ago, so I was expecting there to be dcis behind the nipple when they did the op, as this can be the case with Paget’s. Like I say though, there was nothing at all, and I don’t even need to go back to clinic for a year!

Hope that like Deed’s story too, this helps to reassure you as much as possible!

Luv xxx

Thanks so much both of you. Happy to hear more stories too, even if they don’t cheer me up! I’m trying to be realistic as that’s the way I deal best with things.

Thanks again.

Sass xx

“shelley” so sorry i havent been in touch, been a bit of a tough one with reconstruction problems - back under the knife on tues for the final time (fingers crossed!!) promise to drop you a line.x

Sass,
I also had dcis behind the pagets disease which is why i needed a mastectomy. I will keep my fingers crossed that things progress for your partner as well as can be expected!

best wishes

deed
x

Hi Sassie
I just wanted to to say good luck to you and your partner for her operation on mon, i will be thinking of you both.
Kim xx

Thanks again everyone.

good luck for Monday, will be thinking of you both!

deed
xx