Paget's disease with ILC

I have had breast cancer and also have a friend with a rarer case that I can't find a ton of information on. Does anybody know how Paget's disease influences a prognosis? Specifically paget's with an ILC invasive component? I can find some info on it with IDC but nothing with ILC.
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Hi kaynotrealname, How kind of you to investigate information for your friend with Paget's. The reason that you haven't been able to find anything about its prognosis with ILC is that it is so rare no research has been done. PDN is involved in only about 1% of breast cancers and simultaneously can involve no other cancer, DCIS/LCIS or invasive cancer. The majority of occurences have DCIS or IDC at the same time but occasionally other types are involved. There is a study related to its diagnosis rather than its treatment or prognosis which includes the other type of bc if present in its published data. Of the 41 people in this study 2 had ILC, 1 had mucinous carcinoma and 1 had micropapillary carcinoma. When you are a tiny subset of a rare disease studies are not done since there is not enough data available to draw conclusions and the impact of the results is very limited.
There are a few case studies out there but the ones I have seen involve women in other countries who did not seek treatment until things were pretty advanced. General information on PDN is probably the best thing you can collect for your friend.
Sometimes you can find people with the same diagnosis on other forums but their situations may not be relevant. I have a rare radiation SE (progressive RIPF) and while most patients with this have lung cancer the international pulmonary fibrosis site so far has had 8 people post who had bc rads. Of the 5 of us that are still here only one other woman is in a situation similar to mine. There was a woman whose death was caused by skeletal collapse from high dose oral steroids used as treatment (good to know.) What turns up is pretty much hit or miss.
Hopefully your friend will have a good outcome and things will be easier for her with your support.
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Thanks so much, Maggie. I figured as much but I thought I'd ask.
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