Paget's Disease of the Breast
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Had the ultrasound done today, it was clear, they only looked on one side, the doctor squeezed hard on my breast trying to make something come out but it didn't. He told me what I came there for was clear so maybe I should see a dermatologist. Now I have an appointment on the 18th. I just want a normal nipple again ha. Butthis doctor really didn't seem to care
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Jess, I'm sorry to hear that this doctor doesn't seem to care. I think they do not see a lot of cases of Paget's and they don't really know what to look for, and that a biopsy is really the only way to diagnose it. Best of luck with the derm,, and please keep us posted.
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Hi everybody, hope you're all doing well.
I've a question about markers in paget's biopsy report. In mine, the cells expressed negative for both ck7 and melanA. It is written : ck7-/melanA-. Well I searched on internet and knew that melanA- means there's no melanoma. But I couldn't find what does ck7 mean. I searched also in the forum but seems that everybody knows what it means so it isn't explained any where. Someone knows what that means? This would be useful for newly diagnosed girls like me.
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ck-7 is cytokeratin 7. I don't know anything about it. Reading on Google,,, it looks like it is expressed with certain types of cancer cells,,, so sounds like being negative is good.
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Ok thank you! I know that when Pagets cells are found these tests are done. I thaught it was to confirm the presence of Pagets but that was wrong. I'll ask my dr about it. I need every tiny detail that gives me hope
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Hi Everyone, I had my appointment today at the breast clinic. I had a over 50s mammogram done a year ago so they didn't do another one, I had a ultra scan which thankfully came back clear.
I asked the doctor if he would do a biopsy but he said he feels it's a natural change in skin colour and nipple eczema, so he has prescribed cortisone cream for 2 weeks and then another appointment with him in 4 weeks. He seemed very confident that's what it is as he said cancel if it's better by then.
Obviously I still have Pagets in my head, so all I can do is wait. if there is no improvement I will ask if a biopsy to be done. I think because it's not classic symptoms of Pagets such as flaky skin or itchy he thinks it's definetly not, which is funny really, as that's what I thought the symptoms of eczema are, I don't think it is eczema, never had it in my life
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Ju18, sorry about your visit. Remember no one can diagnose Paget's just by looking at your nipple. Use the cream for 2 weeks, and if not better, get it checked out. Any chance you can see a dermatologist? You might get a dermatologist to do a biopsy.
and you had a mammogram a year ago,,, and they didn't do another one? That seems strange too.
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Hi Glennie19,I thought it strange too, a year is a long time. I will give the cream it's turn, I said I was worried it was Pagets, but he is convinced it's not. Like you say it can't be diagnosed by slight and scans by the sounds of it. I'm not disheartened, just surprised that with my family history that they didn't do a biopsy.
If necessary I will have to go private just for peace of mind, I don't think I can relax until I know it isn't for sure. :-(
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I can understand that. Best of luck, and do keep us posted.
glennie
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I went to my appt with the BC Dr today. He said that clear mammo and ultrasound is good news. The next step isn't an MRI neither a surgery but he will do another biopsy in the nipple to be sure about the first biopsy results before going further. I'll do the biopsy in 2 weeks.
Ju18 I understand what you're going through and how uncertainty stresses us. I advice you to relax anyway and to wait. Things take time to be done. Start with the first step which is cortisone creams and don't overthink about the bad possibilities. Next, if your Dr doesn't think biopsy is necessary you can see a dermatologist in private as you said. This is the next step if cortisone creams don't work. Even if I've been diagnosed with Paget's (a second biopsy will be performed to confirm the result), I regret all the time I spent thinking if I have it or not and I regret more the moments I spent picturing how my life will be and supposing the worse things in diagnosis, side effects and prognosis. It seems our minds work like that but we should be aware and think step by step and never worry about the future as long as we are doing what we can do. Now I'm convinced everything will be ok but I lost days and weeks that I didn't enjoy and live fully, because I had doubts about what I could have. Good luck !
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Thank you ilaam, you ar quite right and I take on board completely what you say. There is no point in worrying ourselves to the point that life is awful as whatever it does not improve or change anything. I decided this morning when I woke up to just get on with life as I normally do and so I got up, went for a run and didn't think about it once. That's how i will carry on. Actually my mind has been on my stomach today as I'm doing the the 5:2 diet, starving!
I hope everything goes ok with you. I will keep up to datewith our posts on here. Best wishes.
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hello. I have never joined a forum. However am left with no choice. You see I have four little children and after similar stories as you all I have been diagnosed with Paget. I fear I waited too long to get an affirmative Skin biopsy.....two years plus. I fear the biopsy I had done today following ultrasoundon the masses (the doctor said it looked like ibc) and the biopsy on " the strange looking nodes" (2 one in breast, one below arm pit) will result in my leaving my adored husband and four children alone now. I worry as the doctor said the next step is where could the cancer also have spread if in the nodes (now my back aches and I imagine all sorts of pains, haven't eaten) You all seem kind. And alive. Just looking for support. I already can't lift my babies due to biopsies and it's so very hard for me. Ty.
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Dear Afraidforfour,
We want to send you a big warm welcome to our amazing community of brave women and men.
We're really glad that you've found us!
It look's like you're finding your way around but if you need help connecting with others or finding information please let us know.
Sending big hugs your way,
The Moderators.
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Afraidforfour,,, sorry to hear of your diagnosis. Breast cancer is NOT an automatic death sentence. There are many treatments out there. Please do check in with us again and let us know how the rest of your tests went. I can answer questions about Pagets if you have any,,,, If you also have IBC or another type of breast cancer,, please look on those forums for help. There is always someone here who can answer your questions.
Hoping that you have friends/neighbors/relatives who can help with child care.
Hang in there. glennie
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thank you so much. I am not sure I used the correct initials. He said it looked like invasive breast cancer. When I looked at " ibc" it was something else here. I am just very afraid it has spread and am trying not to frighten the children. I have not slept or eaten. The dermatologist said last week that it was Pagets but it was " superficial" and I may just need a spot of radiation to be safe. That I'd be " just fine". To go yesterday then and hear all of this I am so overwhelmed but so thankful I came across you all and your inspiring stories. Thank you for your support Glennie
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I know it is hard, but try not to freak out too much until you have a final pathology report besides the Paget's. When will you see the doctor again to get the report about the nodes? We are here to support you.
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Not until Wed. Thank you. I am wondering. Did any of you ever switch surgeons? I was actually referred to the senior surgeon of this practice. The one that I have is new and kind of callous. He kinda rubbed me the wrong way...no pun intended! How would I go about this? Also, I have been embarrassed to tell my huge group of colleagues. Some of them however I have worked worked with for 20 years and are beginning to wonder where I have been. Experience on going public? Finally ...do people survive invasive breast cancer? Which thread could I learn more about that? I can lift my babies again though they said.....that's been heaven. Wish I could stop " feeling" this spread though. Thank you!
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I would consider posting your question about switching surgeons over on the SURGERY forum. You could title it: "Has anyone changed surgeons?" something like that. This thread doesn't get a lot of traffic,, and if you start a separate question thread on the surgery part of the forum, I think you get more answers. You can definitely change surgeons,,, how easy it is to do within the same practice,, I'm not sure,, and that's why I would suggest asking a bigger group.
You don't need to feel embarrassed,, but you also do not have to feel obligated to tell anyone either. You can be vague, and just say, I've had some appointments to deal with. You can tell people when you are more comfortable,, or not at all. It is not your co-workers' business. You are feeling raw right now,, this is so new and upsetting,, this is the time to be selfish and do what YOU need to do for YOU.
Also,, please listen when they tell you not to lift. I know you want to,,, but it could have an impact on long term,,, you could tear stitches, etc etc.
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https://community.breastcancer.org/forum/91
That is a link to the surgery forum,,,
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thank you. I'll give that a try. At least the surgeon is something I can maybe control. I'm going to try and sleep tonight too. So helpful youre here. Thank you.
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dear Glennie19... You have been right. My node biopsy was negative and I did over lift my babies. Resting now as I write this....but feeling more positive that I can do this like all of you brave, intelligent women. THANK YOU
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Afraidforfour,
We just wanted to check in on you and see how you've been doing over the past few days. We're thinking of you!
You're correct -- IBC stands for Inflammatory Breast Cancer -- you must be referring to invasive breast cancer (which can either be Invasive Ductal Carcinoma [IDC] or Invasive Lobular Carcinoma [ILC]). We know it's confusing! There's a section on the main Breastcancer.org site on IDC that you might find helpful.
Also, you may want to check out the pages on Paget's Disease for some really helpful info about diagnosis, treatment and follow-up care.
Hang in there -- we're all here for you!
--The Mods
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I went to the dermatologist and she looked at my nipple for a second and said that it is probably eczema and it may not go away and prescribed me some ointment to help. And to come back in a month.
Well the pharmacist called me and asked if I wanted the ointment because even the generic brand, after my insurance costs $700 and I was like I definitely don't want that. It's originally $1400. That better give me superpowers if I buy that, lol.
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OMG,,,, Good grief!! Well, I'd call that doctor back, and tell them that you can't afford that price tag, and can you get something else prescribed??
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I called back today and said that I need something DRAMATICALLY cheaper. So tomorrow I'll have to see what they gave me. I didn't understand how a tube of something could cost so much money. Especially when she said it may not even wor
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It's probably the "newest" cream for eczema. And most doctors do not have any idea what meds cost unless someone points it out to them, like you are doing. Really hard to justify spending that kind of money on a cream that the doctor feels might not work. Maybe she has samples?? Or can get samples? Usually the drug reps will leave samples as a push to get the doctors to prescribe the new med. (at least,, in the USA,, can't remember where you live)
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I was diagnosed with Paget's of the nipple incidentally after my mastectomy. I found a lump and had it for 4 years before any doctor would actually listen to me. I was told repeatedly that it was a lymph node and call if it changes. It never really changed until I was pregnant with my 4th baby. I had a new OB and she referred me on to be safe. Thank God! After the mastectomy, when I received the path results, the MD just glossed over the whole Paget's thing like it was not big deal because I had the IDC dx along with being pregnant BUT had I not been preggo, they would've recommended a lumpectomy and maybe rads. Instead, they did a mastectomy and found the Paget's. I had no symptoms AT ALL. That's how scary it is. This whole BC is just so murky. If we don't advocate for ourselves, who will?
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I have had an itchy left breast for over a year. The itching is getting much worse. The left nipple looks bigger than the right and has a tiny bump on it. I started googling "what causes an itchy breast" and found Paget's disease .... Someone please help.... What should my first step be???? I don't have any discharge. Thanks for any advice. I am feeling a little anxious. Maybe it's nothing.
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Talk to your GYN or visit a dermatologist. That is where I would start.
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[update] Hi all, my second biopsy results came positive for Pagets. The tissue in the lowest layer of the skin was clear which supposes there's no underlying cancer. This should be confirmed after the surgery which is for next monday. During the surgery the Dr will perform a biopsy for the other nipple which starts to be flaky. The nipple/areola complex will be removed and reconstruction is planned for 3 months later if everything is ok. The surgeon told me Pagets isn't dangerous at all and totally curable. We fear the iceberg phenomena when Pagets hides another cancer which is not the case for now. If after the surgery we get clear margins in the removed tissue I should have no more fears. Any tips for the surgery are welcome.
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