Paget’s Disease plus high grade DCIS

Hi DancingHippo I can completely understand why this feels so unfair.  It might be worth having a chat with the expert team at Macmillan to see if they can offer any support or advice. The helpline is available 8am to 8pm daily in 0800 808 0000. Best wishes 

Have you been told what grade it is? I would find that out and tell them as from what I understood from my oncologist it doesn’t matter what type it is it’s what grade it is. ie I had her 2 negative which apparently is the better type but because it was grade 3 it was immediately classed as high risk recurrence/lots of treatment etc so I would definitely find out whether it’s grade 1, 2 or 3. 

I’m not entirely sure it gets graded? Wasn’t given any details about the Paget’s, just that the DCIS is high grade. And, having read a tiny bit on here, I’m just reeling wondering if there are other tests I should be having? People talking about hormone receptors etc and how high grade DCIS is more likely to recur and/or become invasive (although I’d imagine that’s unlikely as I’ll be having yearly check ups after treatment).

It also worries me that people report that it wasn’t until they actually were under the knife that it became apparent that it had become invasive - by which time my insurance company will already have closed the case. My insurance policy ends on 31 May so there’ll be no comeback…

I’m thinking that I may pop into the Macmillan office at my local hospital tomorrow (it’s not where I’m being seen but it’s in the same Trust) as they’ll hopefully have a better idea of what to expect and also be able to give me some guidance and advice

It should still be graded. Grade 1 is the cells look slightly abnormal, grade 2 is they look abnormal and grade 3 is they look very abnormal. If they’ve said high grade then maybe it is grade 3. 

I had an oncotype dx test done which determines the recurrence risk by percentage. 

Yes I was told at biopsy it was grade 2 but after mastectomy they said it was grade 3. 

I can see your frustration with it badly timed with when the policy ends, how annoying. Yes speak with MacMillan and see if they can offer some help, hopefully they can. 

She said the calcifications - ie the DCIS - was high grade (and she listed low, intermediate and high so presumably grade 3?) but nothing about the Paget’s. Was yours Paget’s?

What’s an oncotype diagnosis test? I guess I should google!

 I’m kinda hoping that I can keep the claim open until more is known but, with surgery planned for “the end of June”, I doubt the insurance company will want to leave it that long as it’ll mess up their statistics to say how good they are at paying out quickly after a claim is made… ‍♀️

A good friend (who is a Paeds Oncology Specialist Sister) has offered to come with me for moral support - I may well take her up on it as she’ll understand the lingo better than I!

No mine wasn’t pagets, I’ve not heard of that before. 

The oncotype tests a sample of the affected tissue in America to determine whether it has a high risk of distant recurrence or not. 

That’s a good idea, it’s always worth having someone else there otherwise you might not absorb the information. 

Ah. Yeah, that is the one I want to know about cos I know they definitely don’t class the DCIS as “proper” cancer.

Paget’s is very rare - 1-5% of breast CA cases. It’s cancer of the nipple, meaning I’ll be having the nipple and areola removed as well as breast conserving surgery when they remove the DCIS. Nipple tattoo to be done further down the line once healed.

I’m sure I read somewhere they can still do oncotype for DCIS. It’s an expensive test though so I think they only do it if they are unsure if there is any benefit to chemo ie if it has a high risk of recurrence. 

I’ve heard you can get a prosthetic nipple surgically attached now. They are quite light in colour though so they usually tattoo afterwards too. 

Hi DancingHippo
I was diagnosed with Paget's in Jan 25. I know quite a lot about this now. I had a SMX 5 weeks ago today and am waiting to find out whether i need chemo. I had a 2 cm  invasive 2 tumur that did not show on ANY of the pre-surgery scans - ultrasound, MRI and PT/CT scan.
Paget's is generally billed at "Stage 0 cancer" - but it IS cancer.
I am happy to answer any questions, if I know the answers! 

Hi Kaf 

Thank goodness - someone else with Paget’s! Well… you know what I mean!

Sorry to read you needed a SMX (had to look that up - starting to get my head around some of the terminology). It seems you had to wait quite a while after diagnosis for your surgery - was there a reason for that or is that normal?

When you say you had a 2cm invasive 2 tumour, does that mean that it’s stage 2 - and that it was only discovered when they opened you up for surgery? I’m having my MRI tomorrow at 9am and been told by my nurse that the results will be discussed at next Wednesday’s MDT meeting.

i received the diagnosis letter a couple of days ago. It states “Paget’s disease of the nipple (ductal carcinoma in situ of the nipple) plus two further areas of calcification on the mammogram with confirmed high-grade ductal carcinoma in situ. However, we would like to arrange an MRI to check the extent of the disease in the lower half of the right breast”.

I’m feeling all at sea as my insurance company don’t class it as something they pay out for as it’s in situ - and the Macmillan finance advisor I saw this morning also confirmed I don’t qualify for any state benefits - but I’m looking at three months off work, lumpectomy, reconstruction to both breasts, my nipple and areola completely removed and then a tattoo done once healed, PLUS three weeks’ daily radiotherapy.

How can this be just?! My life assurance/critical illness policy finishes on 31 May after 25 years of paying in. What if they find invasive cancer after that?!

I just want an op date so I can start planning my life and finances around all of this!