Are all the Paget's Diseases connected??? - Paget’s Support

Paget’s Support

Are all the Paget's Diseases connected???

Chancery
Chancery

Hi, my apologies in advance if this is a profoundly stupid question but I've been searching for an answer to it on the web for 3 days now, without success, so thought I'd try HU!

I have been trying to identify small itchy scaly patches I have on my face (just under my eye) and on my nipple for a while now. Paget's Disease of the nipple has come up, and it looks like a possible match, but I see no mention of it for the face. Additionally I've had what I thought was thrush for 5 months now, but I am wondering if it might be the other manifestation of Paget's Disease (of the vulva).

My question is, is the Paget's Disease of the bone connected in some way to the skin versions? If so, how, exactly? If not, does anyone know why they have the same name? Is this entirely coincidental?

Also, anyone who knows about the skin versions, and whether it's possible to have them both, or whether the facial skin can be affected - I'd be super-grateful. I don't want to put myself through the indignity of a doctor's visit for all my rude bits if it can humanly be avoided! Many thanks...

P.S. Also does anyone know if there is a forum dedicated to the skin versions - I haven't been able to find one - thanks!

17 Replies
oldestnewest

Hello Chancery. Paget’s disease of the bone and Paget’s disease of the breast are completely unrelated conditions. It’s most likely you have a skin condition that is not Paget’s disease on your breast (and would certainly not be elsewhere) but that you should see a doctor about to get it treated. An inflammatory issue like eczema or psoriasis could be treated with steroid cream or similar and a skin infection might need an antibiotic or antifungal cream. It could be that an oral antifungal tablet, like canestan, followed by a course of an oral antibiotic that targets skin infections is needed if an infection has spread to several areas of your body. Either way, go and see a doctor if you can as they will be able to help :-)

Chancery
Chancery
in reply to Mandy5

Thanks, Mandy. I thought they were unrelated, but wanted to be sure. Finally hit on the idea of checking if Paget was a person, and then Googled him when I discovered he was doctor (surgeon?) and found the point of connection is that he discovered all the conditions, hence the name. If my itchy bits don't progress towards getting better I'll bite the bullet and see a doc.

Pantoe
Pantoe
in reply to Chancery

Best not to wait, nip it in the bud as they say.

Chancery
Chancery
in reply to Pantoe

That's almost an unfortunate (or deliberate?) pun, Pantoe, given the itchy nipple!

Pantoe
Pantoe
in reply to Chancery

LOL, no pun intended I can assure you.

I have pagets disease and I met a woman last year who has it in her skull, and other places but she also has the rash on her stomach

On her stomach? That must be incredibly rare. Can I ask you a question, TS, did you find the Paget's made you tired, like other cancers do? If so, did you have that as a symptom before you were diagnosed?

I did but it turned out I also had Hyperparathyroidism, and had surgery for that this past February. I had a zolendronic acid infusion November 2017 and it helped the fatigue for a little while, but having 3 of my 4 parathyroids removed they were not good, that helped a lot. Hyperparathyroidism causes bone pain and some of that has been relieved, but my femur is bowed and that is causing me problems now.

Ah, that would confuse the issue certainly. Any thyroid problem nearly always causes tiredness. The trouble is, Paget's disease (the cancer variety) is so rare there's very little info on it other than the bare bones. Hope you pick up with the health problems!

Thank you Chancery, I am waiting to see if I will be given a pre authorization to go out of network to see an Orthopedic Oncologist to look at my bowed femur.

Very best of luck!

My doctor just did a biopsy for a skin condition to rule out Pagets disease. Extramammary Paget's disease (EMPD): Is an extraordinarily rare cancer – with similarities to Paget's breast cancer – typically appearing near the genital, anal or armpit areas in women and men.

Helpful link:

myempd.com

Chancery
Chancery
in reply to WinJ3

That's very helpful, thanks, Win. I wish I could find out if you can have Mammary Paget's and EMPD together. If you can, then I'd have more cause for worry. I've had this 'thrush' for 5 months and am currently on a very intense regimen (pessaries, oral tablets and cream) which I have to take for a couple of months to try and clear it. So far, no luck. If this doesn't work then something is clearly amiss! I'm also taking antihistamines to help clear up the nipple and face 'dermatitis' problem. They do seem to be helping, but like the 'thrush', not clearing it up entirely. I've either hit a very weird combo of symptoms or something more worrying.

WinJ3
WinJ3
in reply to Chancery

You”ll need to work with your doctors to find out what’s going on. You should ask your doctor to run test to rule out conditions, especially Paget’s disease. Since “EMPD” is very rare and have symptoms like other conditions, doctors normally misdiagnose it. So far I was misdiagnose twice by a doctor who just looked at my condition and started treating me for eczema. I wish you the very best Chancery and pray all will be well.

Chancery
Chancery
in reply to WinJ3

I've not gone anywhere near a doc yet, Win! However, if these things don't clear up then needs must. I know it is highly unlikely I have Paget's (and I would be more than delighted for an all clear), but in truth, the one thing that's more truly worrying is the nipple 'dermatitis'. Apparently it's considered a red flag to only have it in one nipple. To reinforce that concern, the other patch of 'dermatitis' is under my eye, and the eye is one of the rare places where EMPD occurs. The thrush is more than likely just a recalcitrant case of thrush! But I will take on the doctors if I don't get an improvement or things get worse.

WinJ3
WinJ3
in reply to Chancery

Chancery the other good thing about seeing a doctor is to relieve anxiety about not knowing. Also, catching and treating conditions early on.

Chancery
Chancery
in reply to WinJ3

Yes, it seems to have a very good prognosis if it is just on the skin layer rather than having moved to (or started in) tissue underneath. I will get it seen to if it doesn't improve!