Newly diagnosed - Paget's Disease

Hi,

Had my consultant appointment today. 1cm high grade DCIS was removed with clear margins and lymph nodes were clear. Will need 1 week of radiotherapy  but that should be it as far as ongoing treatment. Pain was fine, just really tired.

How are you doing?

Hi!

I'm so glad that your results sound so positive and that you don't need more surgery. There are so many 'what ifs' aren't there. I still have heard nothing a week on from my appointment. I'm not sore or anything but I'm caring for my mum who has Alzheimer's and while I was out of the room she fell.

My sister is down now sitting with her and I'm in my room crying. My mum had told my sister that she was on her own and I shouted that I was cleaning her room. The look on my sister's face really upset me. It's stupid but I guess I'm not coping so well this week. It's the waiting, isn't it.

Anyway, I'm really pleased for you. I'm hoping for the same result! 

Take care

Hx

Hi ladies 

I’m newly (last Thursday) diagnosed with Paget’s plus two growths of high grade DCIS. Waiting on MRI date from hospital and “surgery at the end of June where we’ll remove the nipple and areola, remove the DCIS and then I’ll do breast conservation on that side while my colleague reduces the other side to match to save time under GA”. I’ve been told that I’ll need about four weeks’ recovery before three weeks of daily radiotherapy. 3D nipple tattoo in a few months once I’m healed.

I thought I was okay with everything - having justified that it could be worse and be invasive. Now I’m starting to wonder if any of this actually counts as cancer?! My insurance company have said that DCIS doesn’t qualify as cancer for critical illness cover (which I’ve been paying premiums on for 25 years - and in fact the policy ends on 31st of this month!). Now I’m wondering if I qualify under the Paget’s aspect. I don’t know - having read a few things online - if I’ve been tested ;or need testing?!) for HER2.

I’ve also read online that sometimes, during (or after, once histology have tested the removed tissue) surgery they discover that it has become invasive. If that happens, and the insurance company have already said no, closed the case and, indeed, closed my account, whether I’ll have any comeback

I’m feeling like a fraud and like I can’t ask for help or advice - despite the fact that I’m having major surgery “for cancer” and radiotherapy…

Theres so little info on Paget’s - we’re a rare bunch!

I’d love to hear positive stuff from both of you two years on from the thread, so I’m hoping you’re still on here or have signed up to email notifications…

I have replied to you on your other thread DancingHippo. I am in the middle of this - diagnosed in January 25, and can give you some insights on what I have learnt so far if it helps. x

Sorry I've only just seen this. I can totally relate to this. In surgery they found high grade DCIS so I had to have a week of radiotherapy. It took months for it to sink in with me, by then my treatment was over but I was mess emotionally. 

It is definitely still cancer. I as understand it the cancer cells are in the nipple, most have associated DCIS (not always high grade). This has the potential to become cancer which is why they remove and do whole breast radiotherapy. I also had High grade DCIS on my cervix 16 years ago (I'm convinced they are linked but can't find any info). They were removed and have had normal smears since.

Maybe your consultant can proved some confirmation that cancer cells were found