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feeling helpless- worried about pagets

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Sushifan756
Sushifan756 Member Posts: 34
edited November 2021 in Not Diagnosed But Worried

hi, I am 43. 2 months ago I noticed some wetness on the surface of my right nipple (no redness, no rash)- my immediate thought was that I was pregnant. I was paranoid but my period came the following week so I forgot about it.

I saw the wetness again a few weeks later- it was oozing out of the skin of the top half of the nipple. Clear, sticky. It was scant but definitely noticeable. I called the gyn, got sent for diag mammo and u/s. All negative. Was told it’s hormonal and to leave it alone.

I started to Google and I think it might be Pagets? It came back again and this time more oozing that can be seen on the bra. The area became a little red (not sure if it’s a real rash or just inflamed by the discharge since I was too scared to dry it and leaving it wet all the time). I panicked and put hydrocortisone on it. It immediately cleared it up, no more oozing, no more redness. Nipple appeared normal again.

I am still paranoid so I saw a breast surgeon. She did a thorough exam and felt no lumps or abnormality. I raised my concern about pagets and she says I definitely do not have it. But obviously my “rash” cleared up from the hydrocortisone. She is sending me for a MRI and took some discharge for cytology. She had to express to get the discharge out for cytology - I am pretty sure the sample she got from cytology was not the same oozing as what I have been witnessing. She advised me not to use the hydrocortisone anymore and to return for her to exam if it oozes again. The breast surgeon seems very knowledgeable and I trust her. I haven’t slept in weeks and I kept checking my nipple for discharge.

I can’t get my MRI till my next period comes and I am not sure when that will be. The waiting is just causing me more anxiety. I am convinced I have pagets. Can pagets clear up with topical cream just like that?

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Comments

  • moderators
    moderators Posts: 8,055
    edited October 2021
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    Sushifan, we're so very sorry you're here and worried about your breast, but we're glad you've found us. You're sure to get some great advice and information while you figure out what's going on with your breast. We know it's scary, but try not to worry too much. Paget's disease of the nipple is a rare form of breast cancer, as you can read in our main site, here: Pagets Disease of the Nipple: Symptoms, Diagnosis, and More

    Anyways, it's good that you're being proactive and seeing your doctor, because even if it's not breast cancer, changes to your breasts and breast health should always be brought to the attention of a medical professional. Please, try to relax until your next appointment, try to stay positive and stay off google searches!


    Best wishes,

    From the Mods

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Thank you. I have so much anxiety over this. I have developed a compulsive behavior of checking my breast every hour to make sure it’s still normal looking. I am trying to find a therapist to manage it. I have stopped using hydrocortisone since Friday but sometimes it feels itchy.

    From what I have read, the MRI is not even useful to diagnose it. Just more waiting and unnecessary stress but the breast surgeon refused to biopsy it as she did not see any abnormality.


  • alicebastable
    alicebastable Member Posts: 1,944
    edited October 2021
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    Have you seen a dermatologist? There are things they can diagnose that other specialists (and even general practitioners) don't even think about.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Hi Alice, thanks for your reply. I have not seen a dermatologist. I was told not to put any topical treatment on it by the breast surgeon. I guess it doesn’t hurt to consult another medical professional.

    My nipple looks normal at the moment, no dry skin, no flakiness and has no discharge or skin changes. Just itchiness (that I am resisting to touch or scratch) but itchiness is also on the good nipple on and off. I just ovulated so I know my hormones are all crazy and my breasts feel very full. I am just so so worried to see it oozing again.

  • joan272021
    joan272021 Member Posts: 17
    edited October 2021
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    I was diagnosed with Paget’s after a shave biopsy doneby the dermatologist that my doctor referred me to. Prior to that I was prescribed a couple of different ointments that did not help with what I had thought was just a stubborn rash.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Thanks Joan for your reply. So the ointment didn’t improve the rash at all? Did your rash come and go? How much discharge did you get and what color was it?

    How are you doing now?

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Noticed nipple had a bit of peeling today right after shower, when I tried to peel off that layer, seems to look “raw” underneath and a bit oozing. I left skin alone (did not peel it). About an hour later, nipple returned to normal and no discharge and appeared normal (no redness, no rash).

    Called breast surgeon and explained. She agreed to biopsy tomorrow. Please pray for me.

    Do you have to get chemo with Pagets? I have a little daughter.

  • joan272021
    joan272021 Member Posts: 17
    edited October 2021
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    I only had a small amount of discharge one time at the beginning and I didn’t see it. I woke up with my tshirt stuck to my nipple. I saw my doctor fairly soon but then didn’t follow up with her after a mammogram didn’t show anything. I thought it was a stubborn rash so I let it go for too long. When I finally saw my doctor again she referred me to a dermatologist who then referred me to my breast surgeon after the shave biopsy showed Paget’s and DCIS. The initial plan was for a central lumpectomy and radiation but I ended up having a mastectomy and reconstruction with no radiation. Chemo was never mentioned to me. It’s been nine months since my mastectomy and six months since my exchange surgery. I’ve had a few issues but I’m doing pretty well now. I hope your biopsy goes well and the results come quickly and they’re good

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Thanks Joan. Your message is very reassuring. Glad you’re doing well. It’s hard to battle the anxiety of the unknown.

    My breast surgeon seems to be very understanding so hopefully the biopsy will give me some information. Not sure what kind of biopsy she is doing. I am mostly worried about the results.

    I am fairly certain that it is Pagets. It’s just an instinct, from the beginning. My nipple still looks normal but the sensitivity, itching, and oozing just don’t make sense.

    Please pray for me. How long does it take for biopsy results to come back.

  • joan272021
    joan272021 Member Posts: 17
    edited October 2021
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    Also, no, the rash didn’t come and go and ointments didn’t help. And I read that the mods suggested that you not google for info. I agree. I didn’t google anything for awhile after I found out. I didn’t want to freak myself out. I finally googled before my mri guided biopsy to prepare myself

  • joan272021
    joan272021 Member Posts: 17
    edited October 2021
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    My shave biopsy was on a Monday and I got the call on Friday. The unknown is the worst. I read my Bible app a lot, prayed, and tried to live normally between my diagnosis and surgery. I’ll pray for you for sure

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Thank you Joan. You are very kind. I assumed I will still have to do an MRI after the biopsy, to look for other possible cancer that comes with Pagets?

    What is an exchange surgery? I am trying to be functional at this point but it’s not working. I went to my primary today for some anxiety meds- when I was there, my BP was through the roof and they were very concerned. I finally was able to calm down.

    My husband is trying to be supportive but thinks I am being irrational. He said my nipple looks completely normal and should not demand a biopsy. But I think the biopsy is the only way to find out.

  • joan272021
    joan272021 Member Posts: 17
    edited October 2021
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    After my first biopsy I had a mammogram, mri, and mri guided biopsy. Exchange surgery is part of reconstruction. It's when the tissue expander that's placed right after the mastectomy is removed and an implant is put in. I think you're right to check it out. You'll find out it's not an issue or it's something you need to make a plan to deal with. Knowing what's going on is better. Before my experience my biggest medical fears were blood draws and ivs. I've come a long way. In the beginning when I was nervous or scared at appointments or tests I sang songs in my head or repeated parts of Bible verse. It was good for distracting me from worry at first but then I think I started to feel strong and courageous like I kept telling myself.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Two more hours till biopsy. Getting very scared. Not sure how I’d go through the weekend. My nipple looks normal again today but feels painful, almost like it’s hardened inside.

    I think I am going to have a long journey ahead of me.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    just came back from the surgeons. No biopsy was performed.

    The surgeon did another exam and said she felt a pea like papilloma (can it be felt? I thought papillomas are in the ducts). She was all ready to do a punch biopsy but changed her mind. She said if she got into the papilloma it might cause bleeding and doesn’t want it to happen in the office. She then explained that she really didn’t see any abnormalities in my nipple that warrants an urgent biopsy and wanted me to get my MRI first.

    I was extremely frustrated and tried to convince her to just do any biopsy. She said she’s dealt with many Pagets patients and assured that she does not think I have it. She said she will do a wedge biopsy after the MRI if warranted, this way if anything else shows in the MRI she can just go in there while I am under to also examine at the same time.


    I am ready to cry. I wanted answers. Does this sound normal?

  • alicebastable
    alicebastable Member Posts: 1,944
    edited October 2021
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    Your doctor has the education and experience. All you have is "instinct" and Google. Please listen to your doctor. You are not being ignored; you are being sent for tests and imaging. Good luck.


  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    Thanks Alice! You’re absolutely right. I need to trust the doctors. It’s just so hard to not have answers,

    Writing on here has been very helpful for me, to justget my feelings and thoughts out. Thank you everyone to has responded. Really appreciate it.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    I am back. Just wanted to vent. I didn’t sleep well the past 2 nights and I am consumed with fear. I kept feeling weird sensation on and off on that nipple. I have a therapist appt lined up tomorrow to manage my anxiety, hopefully it’s a start. I am normally not an anxious person at all so I am very frightened that I am feeling this way. I have never been the ones to run to the doctors with little things but this nipple discharge has really set me off.

    My nipple still looks normalish- it seems like the area where it was oozing out from has now turned dark (like dead skin laying over, with the appearance that when skin is healing and it feels hard). I haven’t seen discharge. It is not red or painful, but itchy. I have not used hydrocortisone in 2 weeks now. Does it sound like Pagets? Maybe it is DCIS?

    Since I cannot get my MRI until mid November, and the BS is not willing to do a biopsy, I have no choice but to wait. I hope it is not too late and won’t spread by then. Is it possible for the BS to know just by looking at the nipple? Am I being irrational?


  • typhoon
    typhoon Member Posts: 59
    edited October 2021
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    Sushifan - Echoing Alice's earlier comment, have you been to see a dermatologist? If not, perhaps that might be the most reasonable next step. In the meantime, I hope you've been able to find a therapist to help you manage your extreme anxiety. Best wishes to you.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited October 2021
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    I am going to look for a dermatologist next- but I think I need one that is familiar with Pagets right?

    When I got out of the shower earlier, the nipple was peeling slightly and I made a mistake of removing the peel. Now the nipple is shiny and sensitive to the touch and a bit red, perhaps some oozing. I couldn’t resist and put hydrocortisone on it. I took some Xanax and I am hoping for the best.

    Let’s hope what I have is slow growing. In my mind, there’s just no other reasonable explanation to the symptoms I have other than Pagets. I don’t care what the breast surgeon says.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited November 2021
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    A plan is in place. The surgeons office called. My MRI is scheduled for Nov 18 and my Biopsy is scheduled for Dec 1. I guess with Thanksgiving in between, the surgeon needs time to book the OR.

    It's a torture to wait that long, but I am ready for some answers. Please pray for me, all you strong women!



  • Sushifan756
    Sushifan756 Member Posts: 34
    edited November 2021
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    For the past few days, I have also developed some red irritation to my upper back, chest and sides. Almost like an outline In the area where my bra has contacts with the skin. Red dots, a little itchy but have subsided today. Since the nipple discharge happened 3 months ago and the new rashes just happened recently, I don’t think they are related. Maybe it is from me taking the bra straps on and off to check for discharge?

    I got a dermatologist appt for today to check out the new “rashes” anyway. She says dermatitis for sure. I explained the history of my nipple and she took a look at it and said I don’t see any problem there (been using hydrocortisone again for 2 days). She prescribed a rx stronger cortisone cream, in case I need it (which is what Is expect a dermatologist would do).

    I asked as a curiosity if they do punch biopsy. She said absolutely not on the nipple. Just up to the areola regions. But everything I read here said people got their punch biopsy by going to the dermatologist?

  • alicebastable
    alicebastable Member Posts: 1,944
    edited November 2021
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    You've seen a breast surgeon and a dermatologist. Perhaps a therapist for your overwhelming health anxiety would be the next appointment you should make.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited November 2021
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    Thanks for your feedback Alice. I am not normally an anxious person but it’s a very scary time for me right now.

    Since Pagets is so rare and it seems like so many ladies got misdiagnosed at first - I just really want to get more info. I am sorry if I come off as a hypochondriac. Thanks for listening.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited November 2021
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    There's a thread here for Paget's patients. Just enter it in the search box. But thinking doctors are wrong and Google is right is pretty much what health anxiety is. Have you given the prescription from the dermatologist time to work? Or have you decided it won't without trying it?

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited November 2021
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    I do recognize that I have anxiety and fear over having breast cancer right now, due to the unexplained discharge and nipple skin symptoms i have. The symptoms had gotten better but not completely gone. I have to use hydrocortisone once in a while to stop it from itching and prevent the mild oozing. I have a young daughter and the thought of me being sick scares the heck out of me.

    I came on this site looking for support from people who’s had similar symptoms to share their experiences, so I have more information. I read some Pagets stories on here and almost all of them started with doctors not believing them and asked them to use topical cream in the early stages. So yes I don’t fully trust doctors in this situation. Especially for something like Pagets, which is rare.

    Today was the first day I saw a dermatologist. And the topical cream she gave me was for the rashes that I recently developed all over my chest and back, not for the nipple. I was just surprised when the dermatologist said she doesn’t do nipple biopsy at all (I prefer my surgeon to do it anyway). but so many people from this site were diagnosed by their dermatologists.

    Anyway, I do appreciate everyone’s input and advice. This is hard. My next step is an MRI and i have never had an MRI before. It is scary to me.. Even more scary for the results.







  • alicebastable
    alicebastable Member Posts: 1,944
    edited November 2021
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    I just hate to see anyone tying themselves into mental and emotional knots, to the point that they think their instinct or Google searches have more validity than what multiple doctors WHO HAVE ACTUALLY EXAMINED THE PATIENT have said. Which doctor ordered the MRI? They're not fun, but you'll survive it.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited November 2021
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    Thanks Alice, I really do appreciate your advice. I need someone like you who puts me back into reality in my real life. Except I couldn’t talk to anyone about this issue in my real life (don’t want to scare my family or friends). I have never experienced anxiety and fear like this before. I really really hope that this is nothing and my mind is playing tricks on me. But- my physically symptoms were real and right now no one could explain that.

    The breast surgeon ordered the MRI.

  • Sushifan756
    Sushifan756 Member Posts: 34
    edited November 2021
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    I found a lump today. Pea sized, movable, right under the nipple where the oozing was close to. I am terrified. I know no one can tell me what it is, still trying to move up my MRI.

    For now, I pray that it is something benign. I just don’t know why the mammo or u/s didn’t see this lump at all. The only u/s findings were that my right breast has 2 cysts (8 mm) and fibrocystic change. But that shouldn’t cause the symptoms I have been experiencing.

    I am so scared. Please respond if you have experienced similar situations before. How do I calm myself while I wait.

  • kathabus
    kathabus Member Posts: 45
    edited November 2021
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    I'm sorry you are so worried. I'm glad that you are getting an MRI to put your mind at ease and hopefully rule out what you think it might be.

    It looks like you've been researching this for a few weeks now, and that in itself can put your mind in a bad place. Make sure that you're keeping it fair. Make sure you are googling your symptoms and looking for the benign conditions associated with this, as well! That might help.

    It's hard to wait, but find a new Netflix show, start reading a book, get into a podcast. Those are all things I did while I was playing the waiting games. And they did help!

    PS Make sure to be using your cream even if you don't think it will help. Because if it doesn't (or does) work, your doctors need that feedback.