Paget's Disease of the Breast
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Hi both,
I also had pagets I was diagnosed May 2015. It's been a hard year but this group is great for information and support. i hope all goes well for you Suz hopefully they will start your treatment soon, I felt better once something was happening, I didn't need chemo or radiotherapy I never had a lump, mine was just the pagets. I wish you well and let us know how you are getting on.
Regards Lou.
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Thanks for the welcome, it's comforting to be able to talk to people who KNOW.
I'm actually considering having both nipples removed next week. Both as a preventative and for symmetry reasons. I have E cup breasts and large nipples, so am concerned about the difference in size after the removal. I'd rather have no nipples and fairly similar breasts than one nipple and also be lopsided.... I've emailed the Nurse but the Dr can't get back to me until Tuesday so I don't even know if he'd do it. Thoughts?
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That sounds sensible, they tried to get mine with a wide excision, I only have small breasts and it did make a big difference in size and looked odd only having one nipple, unfortunately they hadn't got it all so I ended up having a masectomy. I didn't have an inplant and it is taking me some time to get used to only having one breast, Best of luck.
Lou.
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If it were me, and with my procedure, I'd ask the doctor about shape after surgery. I was told mine would not change much, but the breast with the surgery has a very different shape. I'm glad to have one "normal" breast, and wouldn't want them to look both like the "bad" side. Round, with or without nipple, in any size, would be preferable to me over what I've been left with.
As far as being prophylactic, I would want to know the likelihood of ever having the Paget's on the other side in the first place in order to decide. And of course, mine WAS the indicator of cancer. Without it, I'd still have a 4mm tumor growing inside that no one knew about. I can understand why you'd feel the opposite. In fact, all the worrying over any tiny nipple change might be more stressful for you than it's worth.
No answers, I know, but that would be my thought process. I hope it goes well, whatever you decide!
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i think they can make a new nipple. I know a tattoo is an option but perhaps not so good if you have large nipples.
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It's all such a big decision to make! I could also have a mastectomy, my Dr would prefer to do it one at a time, but with two small kids on my own I'm not sure how I'd handle the recovery. And would I choose to go back after knowing what recovery is like? I have decent family support, but I just don't know! I wish someone else could just make the decision for me lol.
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Yes it is a big decision mine was took out of my hands when they couldn't get a clear margin . I wish I had known more about the aftermath I may have discussed different options other than a few of my lymp nodes removed. I thought it was over after my operation but now suffer with lymphadema in my arm hand and trunk, constantly having to wear compression for the rest of my life is not good, I had not been told about this. Discuss it fully with your consultant.
Regards
Lou.
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Hello Suz, I agree with Lou, it is a big decision. I went for the mastectomy of my left breast despite not having any underlying tumor. I'm a single mother and was not interested in looking over my shoulder 2, 3, 4 years from now wondering if it would come back. Additionally, electing the mastectomy spared me from chemo and/or radiation. Fortunately for me, the lymph nodes were clear although there was underlying DCIS in the pathology. My doctor said I overtreated but that she would've done the same thing. I'm in the middle of reconstruction now with my next surgery scheduled in December 2016. The initial surgery for me was uncomplicated and relatively uneventful. The recovery was not nearly as bad as I thought it would be but, to be fair, I was distracted by my mother (who lives with me) being diagnosed with brain cancer 2 weeks after I was diagnosed. I think my focusing on her could have been oddly helpful in me not acknowledging my own discomfort. For whatever the reason, I was fortunate to have such a smooth recovery. In the end, you need to do what's best for you. My advice is to talk to your doctor, your nurse, your family, close friends - hash out all your concerns and fears. Don't hesitate to ask questions and advocate for yourself.
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My first surgeryrecovery was not nearly as bad as I expected either, but with small children you WILL need help at home to do everything for a few days at least, and then possibly almost everything for a while after that. I wasn't allowed to pick up my cat for several weeks (but then I had a re-excision couple of weeks out, so my recovery was very prolonged). Something else that is possible with a lumpectomy or partial mastectomy. Ask how big the incision will be? I was told I was having a lumpectomy, and it was coded as such, but my incision was about 7" long, and a lumpectomy is usually 3-4 mm. That will affect your recovery time too. My doctor initially said I could go back to work after a couple of days - he was insane, lol.
But as for pain, and managing, and all that, I didn't need a lot of help. Just a few days to crawl out from nder anesthesia, then limited on lifting and movements and regular naps after that. I could manage simple things, and needed very litte pain meds. But. Everyone is different. And one surgery to the next is different. My second was MUCH harder to recover from and slower, because it came so soon after I went into it thinking, "no big deal, I've already done this" and was shocked at how hard it was.
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I was diagnosed with Paget's disease on 14th September, had been to breast care centre dr said looked like ezcema did a biopsy and 2 weeks later I went back he told me it looked like Paget's was suspicious but he couldn't be sure of this I was alone and devastated he did another biopsy with a larger piece next morning I had a mammogram and ultra sound all clear. I am devastatedbut I'm really not dealing well with this, I have loving husband 3 kids family friends but I'm really not coping does it get easier does it just take time??I'm having next diagnosis this Wednesday dreading it, but I've kind of decided on mastectomy reconstruction as I'm terrified of having treatment
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Sorry to hear that Lorri. For me the waiting was the worst , once I started been treated I felt better. Hope all goes well for you and let us know how you get on
All the best
Lou.
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I could use some advice. In late March of this year I begin having redness and scaling on my right areola (right below the nipple). My derm recommended a steroid cream. This will often help and stop the flaking/scaling but it usually remains somewhat red. The nipple is not involved and the other breast is fine. The flaking and scaling then returns about a week later after I stop using the steroid cream. This has been going on for about 7 months. I had a punch biopsy completed and that came back as dermatitis. My concern is that it keeps returning and that the punch biopsy was somewhat away from where this keeps happening. Has anyone ever had a negative biopsy but it did turn out to be Paget's? Of course, my doctors all keep blowing me off because of the negative biopsy, I am just concerned that it hasn't gone away and that it missed something. Also, how long did everyone have symptoms before a diagnosis? Any advice would be greatly appreciated. Thank you all!
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thanks for replying Lou,it's getting closer now should know in 48 hours appointment 2.15 Wednesday I hope dr will tell me what he's going to do then as I've waited so long now,I'm not going to Tell myyoung children they are only 6 and 9 it's so worrying
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I don't know I'm the opposite I was diagnosed with Paget's 2 weeks ago, well not conclusive of Paget's suspicious of being Paget's I'd another biopsy and I'm getting the results wednesday I'm praying mine was wrong but I know it won't be wrong he did it to confirm it, (has anyone had biopsy that's been wrong)I noticed my rash on aerola only at Christmas I thought it was bubble bath I received for Christmas but didn't clear even after stopping it went dr as my aunt got sick in her 70s went to hospital died of liver cancer 6weeks later never drank or smoked so I went dr said fungus and sent to breast clinical said ezcema but 2 weeks later diagnosed with being suspicious of Paget's I'm devastated
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I am so sorry Lorri70, I hope you get answers quickly. :-(
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momto2girls, I would seek a second test. Better safe than sorry, follow your heart, they kept saying how unlikely mine would be. I was not surprised when it came back posotive.
Good luck
Lou.
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Momto2girls: I would also get a 2nd test. They need to do the punch biopsy in the right area. I too had a flaky scaly area on my areola and nothing on nipple. As Lou said: better safe than sorry.
Lorri: waiting is hard. Hang in there and do keep us posted.
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Lorri, it did get better for me. The waiting for me wasn't really that bad, because I had convinced myself (with the help of the nurses at the imaging center) that it wasn't Paget's, and also I have a skin condition which confuses things AND I had had identical symptoms on the other breast some years before, lasting about 7 months, which cleared up and never came back. But the diagnosis was devastating. I felt like I was in shock, went out to my car and just sat and cried for a while. Starting to read and learn about it helped a little, but that can be overwhelming too. "Getting ready" for treatment, cooking foods in advance, finding clothes to wear after, and all that gave me more a feeling of control and like I was actually doing something - that helped a lot. Talking to a couple of people helped. And finally starting treatment helped. Now I'm healed from surgery, undergoing radiation, impatient with my limitations, and just want to get on with my life. Focusing on positive things helps a lot. Paget's is so slow-progressing, and mine had not metastasized, so this might sound not-right, but compared to some other kinds of cancer - well, I've watched family members and close friends go through horrible cancers, and Paget's alone is not as bad as what I've seen, so I'm thankful for that.
I'm not sure if that helps, and I'm sure everyone is different, but it can certainly get better - much better.
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Mom2girls - I would keep pushing for a biopsy, and of the area that is involved. Though from what I've heard, if it's not actually on the nipple or areola, that is not so worrisome.
I have chronic skin conditions that can mimic Paget's. I have had an identical condition on the other nipple that went on for 7 months and then cleared up, and has been gone for over 7 years. Recently I have had the same kinds of symptoms return, though minor, and had it biopsied, came back negative, but I will watch it, and if it doesn't get better (it is improving, and showed up about 2 months ago). So, yes, can have symptoms that look EXACTLY like Paget's and turn out not to be. But at the same time, since I have something new that looks like it, I will keep an eye on it, and keep having it biopsied if necessary.
I also have another condition that does not involve the nipple, and is benign, but hasn't responded well to treatment, that has lasted for several years as well. But it does not resemble anything cancerous so no real worries there.
The other part - because of the confusion with the other condition, it took a long time to actually BE diagnosed. I have had symptoms, scaling, flaking, and bleeding, never healing but sometimes improving (even stopped bleeding for almost a year) - altogether for about 4 years before I was finally diagnosed. My lymph nodes came back clear, and while I had grown a fairly large tumor (over 4 cm), it was still DCIS, so ... the prognosis from that point of view is very good, thankfully.
If it were me, I would be aggressive in pursuing diagnosis, if it looks like Paget's. But I would not let worry overcome in the meantime. I think worry and stress are a bad environment where cancer is concerned.
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so I'm still in limbo went to dr today he said haven't bad news, then siaid had no news and will take 3 days maybe a week maybe send to higher pathologist in another hospital said all other tests are ok asked if I'd used Steroid cream I said not really suggested doing that and going to a dermatologist my husband wasn't happy so he said ok we'll leave that asked would I like a pwrscription as I was very anxious said he'd give me Xanex I was shocked prescription for steroid cream also and off I went they will call me when results are in
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So sorry Lorri, the waiting is terrible. I'm praying for good news for you.
All the best
Lou. X
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so I've been diagnosed with Paget's the dr rang me just as I was leaving work, he said positive for Paget's n something else can't remember what he said I asked was it dcis he said yes I was shocked to say the least, I've. To go see him again tomorrow afternoon, I assume to arrange surgery I'm devastated, this has been dragging on for weeks I assume I'll have radiation from what I've. Read, but at the end of the day it's cancer
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Lorri, I'm so sorry to hear this. Basically, you have 2 treatment options. 1) Mastectomy (generally no rads needed with this option) 2) lumpectomy and radiation.
It is very common to have underlying DCIS with Paget's. I did. Yes, it is cancer, but it is very treatable.
What can we do to help? You have questions?? Just ask away.
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thanks I know I'm worried that in few years time I'll get cancer again you know the way that that happens, that I'll have cancer on going forever I am 46 in 2 weeks and it's stupid I'm worrying what I'm gonna look after surgery no nipple n my breast way smaller than the other one I think mastectomy would be better is it like a big gaping hole?
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https://community.breastcancer.org/forum/68/topics/790992?page=8#top
Lorri: I recommend this thread by Beesie about DCIS. She discusses lumpectomy versus mastectomy and it might be worth a read for you as you are about to make this decision.
You don't know that you will get cancer again in a few years. Maybe yes, maybe no. I'm 3 years out now. Will I have to be monitored with mammograms forever,, yes,,, but I would need annual mammo's if I didn't have cancer. I am getting one more breast MRI this month, and if it is stable from last year, my MO says, I can just have mammo's going forward.
MY decision on surgery,,, and yes,, I put an emphasis on MY decision,,,, I didn't want to have rads,, and I figured that since my nipple and a margin would have to be removed,, and having small breasts,,, I thought, there won't be much left. I knew that I didn't want recon. So I went with the MX. That being said,, ,if you are considering recon,, you should have a consult with a plastic surgeon and talk about options. Would your recon be cosmetically better and/or easier to get good results if you had a MX as opposed to lumpectomy?
Remember this is your decision. Talk to us here,, and on the other boards,, ,DCIS and surgery, perhaps places to start,,,, don't feel pressured to make an immediate decision,, and get a 2nd opinion if you want to.
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I saw the dr today so I'll be having nipple removed next Thursday hopefully, I asked if mastectomy be better he said no as at moment no invasive cancer I'm fairly big chested he said it won't make much difference to shape of breast and he'll do a very neat job I am worried but I also want it out I feel better about it now, I'll be having radiation when wound heals also that will be talked about after.
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Hi Lorri, that's good not having to wait too long. Hope all goes well for you, I think some have a tattoo done to replace the nipple.
Keep it touch.
Lou.
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yes a nipple tattoo will be done in the hospital I wish I had a fast forward button, I'm trying to look on the positive side but I'm finding it very difficult the dr emailed me confirmation that he will do the operation next Thursday I'm glad but it makes it all very real thanks for your support,
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Hi ladies!
Hoping to gain some insight based from your experiences and I apologize for how lengthy this post will be. Here's my story leading up to this point...
In April 2016( 6 months ago), I began noticing my left nipple being very sensitive, often tingling. I also began having periodic leaking that I chalked up to breastfeeding. At this point, I had NOT been breastfeeding for a year. Upon observation, I realized it was not milk but clear discharge.
June rolled around and I began having intense itching on left nipple. Nothing seemed to relieve the need to itch. My bras began sticking to my nipple and my skin had started flaking all in and around the nipple. The skin directly in and around nipple became reddish, tough, and almost textured.
For the next two months I attempted to use:
Lanolin, Neosporin, silver sovereign, and 2 kinds of eczema creams. They all resulted in no change.
By the end of August 2016, I made an appointment to see my OB. She immediately brought up possibility of Pagets and gave me script for mammogram and ultrasound. In addition, I was given a script for amoxicillin. After completing the dose, there was NO change.
Both tests came back clear. I was then ordered to have a ductogram on left nipple. That also produced little insight. They did not find any masses, papillomas, or calcifications. One area was noted as having asymmetries and being denser but they said very normal given my age, 31.
I was referred to a breast surgeon and after examining me, we both agreed that a biopsy was needed. He also said that he'd like to remove the entire ductal system on the left. In removing it, he said it would solve the issue of discharge and in the process the biopsy would hopefully give insight as to whether there were any cancers.
At this point the left side only had been having symptoms 5 months. 2 days after meeting breast surgeon and setting up my surgery- my right nipple began to show the same symptoms. At the end of the night I went to change into my pajamas and noticed my right nipple having a bloodish oozing. In addition there was a small white blister. I described the oozing as when you've fallen and skinned a knee and blood comes to the surface. There were not drops of blood but an oozy, blood was coming to the surface. Nothing had happened during the day to cause this( itching, trama, etc.)
I called the breast surgeon the next day and was sent for another ductogram and ultrasound. By this point I was not having discharge and could not do the ductogram. My ultrasound came back clear.
I met again with my surgeon the following week and he thought it best to hold off on surgery. He said all signs leading up made sense because it was only my left side. Now with the right side experiencing the same symptoms, he wanted to look into all other diagnostic testing.
I am set to have a bilateral breast MRI next week. One of his possible theories at this point is a prolactinoma pituitary tumor. He said it can cause abnormal nipple discharge. He said the chance of having Pagets is SO rare, let alone in both nipples. It seemed like everything was pointing in Pagets direction until both side became effected. He is still not opposed to doing a biopsy in both breasts but wants to look further incase something else is the culprit.
I guess I'm looking for any stories of anyone with a similar story. I've read it's very rare to have Pagets in both nipples but there have been cases.
Thanks for any replies... If anyone has made it through my novel here! Ha!
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