Paget's Disease of the Breast
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it's great to have the procedure over with mind yourself for the next few days.
Hopefully that's all you'll need x
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My report was years ago. At that time it was a "gene of unknown significance."
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kmrbailey, I didn't get genetic testing done
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The final pathology report showed the cancer was confined to the milk ducts so the cancer was ONLY in the nipple!! When my surgeon called me with the results, she told me that she did not have to cut very deep at all to remove the cancerous nipple. She did a very nice job in that my breast still has most of its shape and looks pretty normal except that instead of a nipple it has a thin horizontal line across it. She also said that no radiation is necessary but she said that my oncologist may want me to take an oral med (chemo?) to ensure the cancer doesn't come back. I have an appointment to see him in a month. I'll go back to see my surgeon next week for a routine follow-up visit and that should be the end my Paget's disease experience. I feel blessed.
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Nip van wrinkle, that's fantastic news I'm delighted for you
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Fantastic news Nip!!! So happy for you! I take Tamoxifen as well. Well I "took" it. I stopped over the weekend due the side effects. But many, many people take it with very manageable side effects so I'm sure you will be fine. Best of luck to you!
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yes I take Tamixofen since march 1st no se yet
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HELLO! New here. I am looking for some info on early pagets. I am 55 yrs young. Total hyst. Mom of a singleton & triplets. STRONG BC incidence on maternal side. 1 pagets male grt uncle, 1 post men female and 2 pre men females.
My experience the past 2.5 mos: itchy nipples most days, flaky nipples on and off, red hot nipple with severe pain x1, Thick creamy to yellow exudice lasting 2 to 4 days x 2, Now burning pain.
Tests done: prolactin neg, thyroid neg, mammo shows area of concern axilla lymph with calcifications, sono did not show calcifications neither show lumps or masses or blocked ducts. Radiologist saw flakey nips and recommend nipple and lymph biopsy.
BS appt monday.
Has anyone with pagets gone for a breast mri. If so did the findings show more than mammo or us? I have fibrocystic breast and some times it is harder to see bc.
Anyone had lymphnode biopsy. Was it painful and did it disable you? For how long? My concern is i lift alot at work.
My gp did not feel that my symptoms were a concern. She felt bc causes no pain. But my gyno did. He was kind enough to explain the possibilities and symptoms. From what i know and read about pagets most choose DMx. Anyone that went thru that please share pain and recovery time. From what i see pagets is rare and many people never heard about it. I TY in advanced for sharing and educating me and others, which helps us make better decisions in our care.
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Hi, your systems do sound like mine although possibly could be something else, mine didn't show up on mamagram nor mri, Pagets usually is found with a biopsy I believe. Pagets is quite rare so try not to worry, but if it persists perhaps ask for a biopsy to be done. Peace of mind.
Good luck, let us know how you get on.
Regards Lou.
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Hello!
I had similar symptoms as well. Mammo, ultrasound and MRI all negative. Biopsy showed Paget's. Recovery from biopsy was a week but I was still able to work (I do office work). Not particularly painful - just couldn't lift or go to the gym for a week or two. Once diagnosed, I opted to go with a mastectomy on the affected breast with sentinel node removal. Out of work for 6 weeks. I wouldn't say I had extreme pain - more discomfort. But definitely couldn't lift for a couple of months. Six months later, I did the reconstruction surgery. Back to work in 2-3 weeks but couldn't resume regular physical activity (lifting more than 10 lbs, gym) for 8-10 weeks.
I agree with Lou - I would get the biopsy to confirm and provide peace of mind. Good luck!
Kristen
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At my follow-up appointment with the breast surgeon this past Monday, she told me she wants me to see a radiation oncologist who will determine if I need radiation or not. I have an appointment to do that next Thursday. I still have a little itching, but I think it's from the incision healing. Other than that, my breast looks good. She wants to see me again in 6 months.
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ty lou and mrk My appt is monday with the breast specialist. I am hoping for a biopsy on that day. I will keep you updated. As scared as i am, i am handling it well. The only thing that showed was calcification in lymph node on the mammo. It is larger x2 and shaped with a tail. From what i know it was not like that last year. I have all my results and films of everything. I do think it is pagets, early onset. Thats why i went for the mammo. Thinking of skipping the breast mri since my insurance said no. Opting for a biopsy. I will keep you updated. I am still fighting with my ins co. My gyno is too. He said it will show what is going on...if positive I am thinking of mastectomy.. and reconstruction. Being rather large breasted since 5th grade...I welcome smaller boobies lol. My back will feel better ...clothes will fit better. Etc... lol. All you woman are so courageous and positive. I ty and find strength in it.
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1momx3, hopefully you won't be jjoining this exclusive club, unfortunately your symptoms sound like Pagets to me also,you say nipples in your post, do you have symptoms in both nipples or one only? I would imagine if it's in both it would be unlikely to be Pagets I don't think you get it in both but I could be wrong about that.
I'm 46 had Paget's diagnoised last year I opted for lumpectomy and I had 20 sessions of radiation, I'm doing good now.Mine didn't show up on a mammogram or ultra sound, biopsy was needed to diagnose I think biopsy is the only way to detect Pagets I would definitely insist on a biopsy I had to have 2 the second was straight through nipple and very painful, please let us know how you get on.
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Hi Nip van wrinkle, let us know how you get on with radiation oncologist on Thursday, best of luvk
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1momx3
I had a breast MRI,, but it didn't show anything. I also have fibrocystic breasts.
Your best bet and really only sure way to diagnosis is to have a biopsy. I had a mammo, ultrasound, and MRI,, did not show anything. Biopsy showed Pagets. I opted for a MX,, and there was also DCIS that no one saw on imaging. Glad that I had the mastectomy.
And BTW,, cancer can cause pain. That is wrong to say that it doesn't.
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I went to my primary care doc last June for an itchy right nipple that had been bothering me for maybe 6 months or so. It wasn't intolerable at first, but by last June the redness was moving out beyond the nipple to the aureola and it was quite painful. My doctor's PA sent me to get a breast exam and mammogram immediately. The radiologist met with me and told me there was nothing to see or report. He assured me it was dermatological. So, I went to the dermatologist and they gave a recommendation to use cortisone cream (over the counter) and to use only Dove soap and some ceravue lotion. Six months go by...it's a bit better, but still there. Then, finally it was so itchy it scared me because it began to bleed. I went to the dermatologist again and they recommended a stronger cortisone cream. But, I insisted on a biopsy. I told them I was afraid it was cancer. I felt like they thought I was being a hypochondriac, but they agreed. 6 days later, they called and said I had Paget's disease. So, now I am waiting to get in with the surgeon to see what the next steps are. I don't kid myself, I know I am in for a lumpectomy at minimum or a full mastectomy at worst. I am not afraid that I will die so much, but I know I'll be going through major inconveniences of surgery and reconstruction and most likely radiation. But, I am going to do it all because I have a husband, a daughter, and grandchildren who I'd like to see grow up. I am 68 and have been retired for 4 years. I feel better now physically than ever in my life and it would be easy to ignore this and hope for the best. But, because of testimony from others I found through research online, I know that's not going to result in a happy ending. So, with a big sigh, I take one step at a time. The rest will somehow take care of itself. I'm glad I found this website. I wish my primary care doc, my radiologist, and my dermatologist had taken the time to do this kind of research. I plan to educate them all so they will be alert for it for someone else who might come along with the same symptoms.
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caring4 u: Sorry you are here, and joining the club. I'm glad that you were persistent and insisted on a biopsy! Paget's is rather rare and many doctors have not seen it. it is good you are seeing the BS for your options. If you are considering reconstruction, I would also suggest that you consult a plastic surgeon who specializes in breast reconstruction. There is a recon section on this forum where you can get lots of answers to your questions. It's good to be informed!
I'm almost 4 years since my mastectomy and I'm doing fine! Hang in there, and be sure to let us know how you are doing.
glennie
PS cute puppy!
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Hello Caring4u! You are right, you have your family and you will do it for them and for yourself and you will find strength you never knew you had! You will be able to do this! I too was diagnosed with Paget's disease. Even the best city medical professionals would ask if they could see it, show interns and medical residents. They just don't see it that often. I got very used to showing it off! That was a little over a year ago. I was terrified and the kind strong women on this site like Glennie19 were an inspiration at a time where I just didn't know what to do. I did the chemo, had a double mastectomy with immediate reconstruction and yesterday got my port taken out! You can do this too!! Many thoughts and hugs coming your way!
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Afraid for 4. It is one nip only. I am a bad typer with my auto curruption..lol. ty for the reply. I have been reading on bilat mx and reconstruction and flap procedures. I had gotten so mad at my md for saying pain is not cancer. And she dismissed me. I then asked what is that based on? Experience..unexperience..or just stupidity ? She did not answer. I am glad my gyno explained what it could be. From an infection... papiloma to pagets. I will update on monday afternoon.
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caring4 i am with you glad i stumbled on this site. Remain positive...research...and educate. MANY People never heard about pagets and even fewer confuse it with pagets of the bone. 1 to 3 % (depending on the source) of all br ca is pagets. Very rare indeed. GOOD luck and my thoughts and prayers are with you all.
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1momx3, I had an MRI after the biopsy came back with Paget's, along with a mammo and ultrasound. The MRI did show more than the other scans, but I had a lot of cancer in the breast. I don't think you need to worry about the insurance paying for an MRI. Do the biopsy first, if it is positive, the breast surgeon will request an MRI so they know exactly what they're dealing with prior to surgery, and at that point the insurance HAS to pay for it. But only the biopsy will tell you if you have cancer or not.
I had several lymph node biopsies. They were fairly painless. The only thing you feel is the local anesthesia injection. After that they take about 3 samples with a needle. It didn't stop me from working, the area will look and feel bruised for a while, and I wouldn't lift things for a few days.
Caring4, I too have been educating my PCP and my gyno ho both missed the Paget's.
Afraidforfour, what was the port removal like and how painful is it now? I am getting mine removed on Wednesday.
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ty Maya for the reply. I was nervous about the biopsy but feeling more confident. It seems like the plan to take. Hopefully my anxiousness wont get the best of me waiting for results. Seems like the worst part. All of you have been awesome. Knowing that others are or went thru this too is a great comfort. Hearing your experiences and seeing the positive in this has helped tremendously.
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After seeing the BS and reviewing all test results (prolactin, thyroid, smear, sono and mammo) She felt since my scaliness and lactation was not shown at the time she wants me to get a breast mri. I have an open appt for when my symptons return. After the breast mri to rule out papiloma then I will go for the nipple biospy and lymph node biopsies. Since they are enlarged with calcifications and thickened cortex she seemed more worried about that than the lactation and scaliness on my L breast. I am seeking a 2nd opinion as well.
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I saw the radiation oncologist a few days ago and she recommends 16 radiation treatments to follow-up my lumpectomy. I'm not totally surprised because everything I've read says this is pretty much the protocol: if you have a lumpectomy, more than likely you're going to also have radiation. So, I'm good with that. I go back on Monday for a breast MRI and also for a simulation where they will do the markings. I don't have a confirmed date and time yet as to when my daily appointments will be, but I think they want the first one to be the week of April 9.
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Yes Nip van wrinkle that is the treatment I think as long as wound is healed they will start,I'd my last operation on November 11th had my tatoo marking and scans in that tunnel machine or whatever it's called to get exact measurements where you need radiation Christmas week then started radiation on 4th January. I Felt safer having radiation that everything was being thrown at the cancer.
You will feel better knowing you now have a plan in place best of luck plenty of tips on radiation here too
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Hi there, I was 46 when I first noticed a straw coloured discharge from my nipple . That dried up and then I had what looked like a dry nipple with very slight flaking . I saw 3 doctors over a period of 15 months all said it was dermatitis . I didn't have itching although I had a slight tingly sensation if it caught on clothing . I eventually had needle aspirations , 6 punch biopsies a mammogram and guided ultrasound . Results came back with pagets plus DCIS . I opted for a double mastectomy where they found a 5 cm tumor right at the back of the pagets side . ( this didn't show on mammogr or ultrasound ! ) I was diagnosed in oct 2014 and so far very fit and well . My tumor was her2 so very aggressive . I must point out I was very very unlucky . Xxx
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forgot to mention I did have occasional pain , like a deep burning pain throughout the whole breast , this was mostly at night lasting only a few seconds . It's all scary at first and the biopsy isn't pleasant but I think the thought is worse . My doctor had never heard of pagets and when I went back the fourth time she sniggered saying " do you think this is cancer ? " I was ( still am even after chemo , radio , herceptin double mastectomy ) healthy , healthy eating , gym 4 times a week . Life is unfair sometimes xx
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had my 2nd opinion. This BS also recommended breast mri before the biopsies. She gave me the best breast exam I ever had. She explained pagets and reassured me that if it is positive i caught it very very early since the scaliness and lactation comes and goes. She also said that she wants the br mri to see what my axilla lymph node... it is close to my heart. I will be going for a guided biopsy, nipple biopsy end of this month or early next month. My insurance would not give authorization for br mri... they want another sono done first, which puzzles me. She is making copies of my films and sending a report to get authorization. She also said due to dense fibrocystic breast- Mri is better than a mammo. She did not think i had a papiloma like the 1st bs thought. Has anyone dg with pagets had a family member who had it? I am wondering if it can run in families.
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- Hi , it's good you caught it early . There was no history of pagets into family . I am in the uk so I was treated on the NHS and don't deal through insurance . The day of my mastectomy I had MRI of lymph nodes . It sounds very frustrating for you . X x x
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I don't have family history,, but I seem to recall someone on here did. I don't think it runs in families. Does BC run in your family? Any other type? I had 2 great aunts with BC, but no idea what type they had.
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