Oh Cackles, thanks for your reply. I’m feeling guilty now, cos I guess I forced their hands into telling me the result - but I feel relieved that there IS a result, albeit an interim one. When they were just telling me that the results weren’t available today, I was worrying that they were going to string me on for weeks like they did 10yrs ago when I had the DCIS - I’d got a red, dry nipple which didnt look right, so I checked myself and found a lump. For 3 months, they kept telling me everything was ok and I had fibroadenoma not cancer, then they’d say but there’s abnormal cells so we’ll do another biopsy, but they couldnt tell me what abnormal cells meant, and said it wasnt cancer. It was a real rollercoaster, and I didnt want that again this time. Also, I was worried today that they may have lost my biopsy tissue, and that’s why there were no results.
So, I know what you mean that they shouldn’t have told me today, but I guess like I say, I forced their hand, in that I wanted to know why the result wasnt available. That’s when they said the result had indicated fibroadenoma, but they were double checking by doing the extra testing, as I’d told them the blemish had looked just like my Paget’s disease.
Yes, I know I’m lucky they’re doing the extra testing - I just wish it’d been explained to me so that I didn’t get upset and annoyed, and had to ask for the information. Am I just a really horrible, demanding person?!!
Lots of previous memories of the breast clinic came back today - the 3month rollercoaster culminating in the DCIS diagnosis 10yrs ago, their lack of concern at my reddened, scaly nipple, always hating how my nipple looked after the lumpectomy, and then last year getting the diagnosis of Paget’s disease of that nipple. It hadnt been right for 9yrs - but they’d never been concerned about it, although two occasions the radiographer asked me about it during mammos. They havent even got it written in my notes about the gammy nipple 10yrs ago.
I suspected at the time of my DCIS diagnosis that I had Paget’s disease but they never worried about the nipple, only the breast lump I’d found, which was the 4cm DCIS.
Paget’s is quite rare, so I don’t think there’s as much info about it - if there’s anyone out there who’s like me & had eczema appearance of one nipple for years, and then suddenly it became Paget’s, then I’d be interested to hear about it. My experience has left its mark on me emotionally, even now a year on, cos even looking at the stick on nipples in places such as the Amoena catalogue upsets me, thinking how my nipple had looked for so many years.
By last year, I showed them the nipple again and they acted immediately, and were lovely with me. I can only presume that the gammy nipple was ok until last year, cos I’m sure that if it’d been Paget’s from the start all those years ago, it would have showed symptoms much earlier than it did.
But for now, the great news is that hopefully after next Wednesday, I don’t need to be seen in clinic for another year! Which is probably for the best for everyone - I’m certainly not a good patient, if today’s anything to go by. There they are doing the extra testing so they can properly reassure me, and there’s me whinging on that they dont communicate properly when they cancel my appt.
Oh, I promise my next post will be more positive and read nicer than this folks!
With much love,
Shelley xxx