Questions on Paget's disease
This is my first time to ever post on a blog like this. Honestly, the fact that I am actually doing so scares the hell out of me.
I'm hoping to get some clarity on Paget's Disease. The information I have found is minimal, my doctors office doesn't seem to have much experience and the blog comments are old, but I am hopeful some of you with experience and knowledge can share some insight with me.
I will post my question, so you don't have to read the LONG post. If you choose to read it and offer suggestions that is appreciated.
My primary questions:
1) Does Paget's disease always have visible nipple issues? Can you have Paget's if you only have the itchy/tingling/prickly sensation?
2) Is a needle biopsy painful?
If you are bored...Here is my story...
Over a year and a half ago I started to have sever itching like sensations in my right breast. When I say itchy, I mean an almost painful sensation that is between an itch/tingle/prickly sensation. I went to the doctor and they ordered a mammogram and it showed nothing. I was pleased, but I have dense breasts so it wasn't surprising. Because I had neck surgery previously, they felt that I may have nerve damage that was making my breast react. So they gave me Nortriptyline and reduced my caffeine intake- NO change. My doctor then sent me to the breast center within my medical group (Kaiser). The breast surgeon said to me... You don't have breast cancer so there is nothing I can do for you and excused me.
I left feeling that was it... A year later, the itching/pain continued and I continued to thrust my hand down my shirt to itch my breast or to push my nipple as it seems to lessen the discomfort. I went back to my doctor and told him I was still concerned since the discomfort is still ongoing and seems to be more frequent and abnormal it has continued over a year... When I told him about the previous visit with the surgeon he was very disappointed. He ordered a new mammogram and an ultra sound, both showed nothing but he sent me back to the breast center to meet with a PA that handles breast issues.
I met with the PA and liked her very much. She had me go to a dermatologist for a mole on my breast, which he said was fine. She then had me take an antihistamine and vitamin E for 30 days. No changes. She then had me apply a cortisone cream and antibiotic every day and use lidocaine for the pain for another 30 days. No changes. My breast has become tender and I have little feeling in my right nipple other than the itching. This week she ordered an MRI and I was thrilled to finally be moving to the next step... Only to be called an hour later stating they rejected the request because there are no symptoms other than the itching. She was able to talk to a surgeon who agreed to do a nipple biopsy after I try Pepcid for 3 weeks to see if it is actually a stomach issue driving the itching in my breast- I have NO stomach issues....
I am at a loss and feel so defeated. I can't share with my family because there is nothing to tell them. I don't want to worry them if there is nothing to worry about. But I am becoming so frustrated because I know something is wrong- what ever it is, it isn't normal. I don't know what else to do other than to keep going along with the "program". But I am also concerned that if I do have Paget's I am a year and a half behind in treating it- if any of you have any suggestions, insight or feedback, I am happy to listen.
Best to all of you in your journey.
Comments
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Hi goldincalifornia,
We're so sorry you're here and worrying -- we hope others will be by shortly to weigh in with their experiences. It's good you're being diligent about your breast health, and that your doctors have agreed to continue looking into your concerns.
For some more information on Pagets, including common signs and symptoms, see the main Breastcancer.org site's section on Paget's Disease of the Nipple.
We hope this helps -- please keep us posted with what you find out!
--The Mods
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goldincalifornia - Sorry you find yourself here and that getting answers is taking so long. I was diagnosed with pagets last year and a MRI revealed underlying DCIS. Both my mammogram and ultrasound were clean. I started with my Gyn who then referred me to a dermatologist. I also tried a prescription steroid cream for a couple weeks before I insisted on a punch biopsy. A punch biopsy is the ONLY way to confirm its pagets. Personally, I didn't have any itching, just an on again off again flaky nipple. To the naked eye my nipple looked completely fine. Pagets has many different signs and symptoms so push for the biopsy if you can, maybe a different dermatologist would be willing to do it immediately. Keep us posted!
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Thank you! Crazy as it sounds, I am glad I put it out there- I was starting to feel isolated and like I am over-reacting. I am appreciating the support already.
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Thank you so much for sharing your story. Since I only seem to have one symptom I feel that I am not being taken seriously. But I will tell you the one symptom is making me batty! I am sorry that you have Paget's and hope your treatment is is going well- Your story will help me advocate that not all cases are the same. I am on Pepcid for 3 weeks- I laugh even typing this. But I am also glad I am not going to ruin another bra with Cortisone, an antibiotic and lidocaine cream!
February 5th is my biopsy appointment. Fingers crossed and I will keep an eye on this thread!
Again, sincere thank you for telling me your story and huge hugs for you and your journey.
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Hi goldincalifornia
I had similar sensations that you described but coupled with an actual open sore on my nipple. I was very lucky that my doctor sent me straight to the breast clinic. Surgeon at breast clinic advised punch biopsy when mammogram and ultrasound showed nothing. Biopsy showed Pagets, so had nipple and area below removed 2 weeks ago. Considering I have psoriasis on 30% of my body I was lucky I was not sent away with creams for 6 months like many others seem to be. I owe a lot to my doctor. Biopsy not painful as they numb area first, just usual needle prick. Good luck, and don't worry. I have seen many stories of Paget's finally being diagnosed after a year of symptoms, and all full recovery after removal.
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Thank you very much for telling me your story. I have no visible changes on my nipple, why I think I am getting some push back. They basically said if I had Paget's it would have shown changes in my nipple since the tingling/itching has been present for 1.5 years.... So I think because of no physical signs, I am not being taken as seriously.
I am now thankful they denied the mammogram and one of the surgeons agreed to the biopsy. In all honesty, I want to know either way at this point because it is going to be what it is- sooner I know sooner I can move forward.
Hopefully your Pagets was all removed with the surgery you had and you will have a healthy follow up. Again, thank you for sharing, it means the world to me to hear others stories and the positive outcomes.
Best to you.
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hi Gold sorry you seem to be getting the run around. I have Paget's but it was found when my BS wanted a breast MRI before my lumpectomy. The day before the MRI I found a new lump on/under my areola and near my nipple. Pea sized but felt enormous!! I was terrified and didn't know,about Paget's disease. The MRI showed Paget's so u had to have more biopsies because my 1st tumor decided to have company. My MO couldn't say if it was Paget's because it's not well known. BS asked me if I had symptoms and I told her the only thing I ever experienced was a sort of build up in my nipples similar to "old" milk l I'll leave when i was breastfeeding my kids (the youngest is 26) i used to pick it out monthly and sometimes 2x's a month. She said it most likely is Paget's and treatment would be the same. EXCEPT that after Neoadjuvant therapy I was looking at a mastectomy instead lumpectomy and nipple sparing surgery. Apparently the nipple can't be spared with Paget's and I think that's awful!
You asked if biopsies are painful.. well it's not the most comfortable thing in the world but I'm very breast dense and for me it was the recovery that was probably more uncomfortable. Trying to sleep was hard... I did find a small very small and very soft follow that I used to support my breast (I'm a side sleeper).
Sending ((hugs)) and hoping you get answers soon. Waiting IS the hard part...
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nanette7fl
I appreciate you sharing your story with me. This is a wonderful forum full of folks willing to share the worst part of there life with strangers- it is crazy and inspiring.
Good thoughts are coming your way from me! I will provide an update after the beginning of February. Fingers crossed it is not Pagat's (not just for me but because I have a almost 24 year old daughter). But I know it will be what it will be and if it is that, I will stand tall and fight with the rest of you Warriors.
Besides the itching (which isn't exactly itching, because it is actually painful in a sense) the waiting and wondering is excruciating.
Good vibes being sent to you from the West Coast.
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I’m curious: does the itching come and go or is it constant?
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It comes and goes. Nothing seems to make it stop... sometimes I push my hand on it (skin to skin) and that seems to stop it for a bit. It can last for 20 seconds to minutes and happens throughout the day. It is so bizarre really. And it’s not just an itch it is indescribable and actually painful
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goldincalifornia, thank you for responding... I’m sorry you’re going through this... my non-breast-cancer-breast nipple and areola area havebeen itchy on and off for the past three months but not painful...
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The biopsy is the only way to be sure. Clear mammos and ultrasounds mean nothing (I had those for years). It's good to have those diagnostics as well, but taking samples of the skin or any discharge and looking at the cells is the best way to definitively diagnose Paget's.
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Hi to all! I am sorry for your pain and all the running. I understand your fear. I have not been diagnosed yet. it's been 3 months since I noticed my left nipple pulled in. I also feel the breast swollen. The itchiness goes and comes but, it's not bad. Sometimes I feel a sensation in my breast that I can't explain. No bumps.. I've been to my GYN had a mamagram and sonogram it came back good. But it was recommended for me to get a MRI because of my family history. My mother died of breast cancer at the age of 58 and my father was in his 70's when he died of bone cancer. I am 57 years old. Anyway my MRI was denied because they didn't receive the proper information and the GYN didn't do peer to peer. So, now I am scheduled to see a breast specialist. I have been taking pictures of my breast during this journey. When it gets cold it perks out but the nipple stays in. When I remove my bra its all the way in and when I wake up it's also pulled in. I am now noticing small sores. The right is perfectly fine. I am so scare.
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@Life5 I hope that you continue to seek a diagnosis. I started having flaky skin/bleeding/inversion in Feb or March of 2020. I went to PCP and they referred me to breast specialist. Specialist said we should try cortisone. I mentioned Pagets (had googled it). She thought it was unlikely but agreed to punch biopsy. That biopsy came back negative & and she said to use cortisone. I did and it didn't help. I figured this was just something I have to live with. I hate going to doctors and when COVID quarantine happened, I stayed home like many people.
Fast forward a year later- April 2021, I still have the problem on left nipple (right is normal) -- I also notice a small hard little ball/knot (like the size of a small stud earring) just to the right of my left nipple probably 3 inches deep. I and went back to specialist. She said she didn't want to biopsy again, said the knot I felt seemed more like a "shelf" to her? Not sure if that's a surgical breast composition term, but that's what she said. She referred me to a dermatologist and prescribed RX Cortisone. I tried the RX cortisone- made no difference-- did not go to dermatologist.
I knew that something was very wrong w/ left nipple. I even told the breast specialist that I felt like my nipple was dying.
Went for annual mammogram in June (later than I should have) they did regular mammo and 3D mammo and Ultrasound on site. Followed up by breast biopsies and MRI. It turns out that I have DCIS 7CM, IDC 1.5cm, IDC 0.9 CM and IDC 0.7 CM- with nipple involvement on left-- none of which showed up on my late 2019 mammogram. They have not re-biopsied my nipple to test for pagets, but doctors say at this point it wouldn't impact my treatment at this point anyway, since I am having a double mastectomy and chemo (ER+/PR+/HR2+).
I found an NIH paper that describes best practices for pagets of breast. Endocrine testing is important as well as MRI- they also recommend a wedge biopsy instead of a punch. This type of cancer is often misdiagnosed and disregarded. It is also very rare. So, odds of having it are low.
I have shared my story with anyone who will listen. I wish I could share photos as I have taken them all along this journey. I googled for images several times during that year as my situation seemed to worsen and I think there should be more out there to help us better advocate for ourselves. The nurse navigator asked if they could take photos for educational purposes and I agreed. Not sure when/where those will show up- but I hope they make it to breast doctors in study + gen pop for all I care. Outcomes for pagets when there is a palpable mass involved is worse than outcomes if they catch the pagets before there is an underlying mass. I still get angry when I think about the lack of concern from the specialist all those months ago.
Look for medical papers on Pagets of the breast online and bring your research paper to your doc-- ask for whatever medical/surgical/pathology tests the paper recommends. I hope that in your case, it is dermatitis or some other benign diagnosis. Please keep this group updated if you get any news. Best of luck!!
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Just want to share my experience with Paget's. I had Paget's for 3 years......I saw a breast cancer surgeon and she did not push for me to have a biopsy......I would have if she had pushed......anyway I had clear mammogram, ultrasound and MRI. Nothing showed up and I was ok with it. Then 3 years later I noticed a difference in my nipple......my PC doctor said go see a breast surgeon. Old one had left the practice so went out of town and there was no question about anything.......she said looks like Paget's, we are doing surgery and we will go from there. No biopsy ......straight to surgery. Luckily I was told Paget's is slow growing. I would suggest you get a biopsy. I had very little symptons. Itchy breast one night after shower, red nipple and that was it.......about a year later the nipple inverted.......later the nipple came out again and things looked different. This was over a 3 year span. It would be so worth having a biopsy to ease your mind. Good Luck. I was diagnosed at the age of 74. I am doing well but am having issues with joint pain etc and am not sure if from the Letrozole. Am seeing my oncologist next week and we will go from there. Good luck to all and prayers coming your way.
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Hi, thank you so much for your feedbacks. I saw the breast surgeon, I showed him my photos but he dismissed it quickly by taking my phone away. I was very upset. He then said, you don't have Paget's disease, you are fine. But I told him that I wasn't satisfied with his conclusion. I wanted a MRI, I want an explanation of the sensation feeling and the appearance of my nipple. His response was, I don't know why. Exactly I want a MRI it's my body and the insurance pays for it. So I an schedule tomorrow 8/31/21 for my MRI. Now I will get my answers. Thank you be blessed!
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