Paget's Disease of the Breast
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Wow, hello to all the new people!! Sorry that you find yourselves over here, but we are a good community.
For those of you who are getting a hard time getting a diagnosis, or just being "heard" by your doctors,, let me just tell you my story. I had a mammogram,, and an ultrasound and an MRI. None of those showed that I had Paget's. I had 2 doctors look at my breast and tell me that they were sure I didn't have Paget's. Well, you can't diagnose Paget's by looking or by imaging studies. You must have a biopsy for diagnosis. Please don't let anyone tell you that "your mammogram is normal so you don't have Paget's". As others have said,,, if you can't get your breast surgeon to do a biopsy, try a dermatologist.
And sadly, you are not "too young" for BC, as the many women here in their 20's and 30's can tell you.
Good luck to all waiting for biopsy results. Let us know how we can help.
glennie
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Update- I saw the breast surgeon on Friday and based on the ultrasound and Ductogram (he was expecting to see a papiloma which was not there) he still feels that what I have is not Pagets but a nipple adenoma instead (copied this from the Internet-Adenoma of the nipple is a rare breast tumor that can present various histologic features. The most common symptom is erosion of the nipple and nipple discharge, followed by induration or tumor formation at the nipple. Adenoma of the nipple is an uncommon lesion that is often mistaken clinically for Paget's disease and misinterpreted pathologically as ductal carcinoma. However, adenoma of the nipple is a benign lesion that can be successfully treated by simple surgery.)
With that in mind he suggested just doing surgery under a general anesthesia to remove the tumor since if it is an adenoma it needs to come off. Excising it from the nipple and then doing pathology on the whole thing. I am scheduled for surgery this coming Thursday and should have the path report back next week.
I'll let you know what the outcome is.
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Hope all goes well for you, yes let us know how you get on.
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Hello,
Like many others, I'm new to the Paget's "club" having just been diagnosed on April 15. Prior to the biopsy and pathology results, I had had a mammogram and ultrasound that both came back clear. Last week I had a breast MRI and the results showed no signs of cancer beyond the nipple. All of this is great news for me - all things considered.
Having said that, I obviously will still need surgery. Since the MRI shows containment within the nipple, my breast surgeon has advised that we could just remove the nipple vs. a mastectomy - essentially that it was up to me. My initial thought is to just remove the entire breast as I do not want to keep looking over my shoulder and potentially having to face a scenario several years from now that it has spread and another surgery is required. I'm not emotionally attached to my breast so removing it seems like the "practical" thing to do. Many friends and family members seem to think I'm being too radical. I prefer to think I'm simply being sensible.
Has anyone else faced this dilemma? What other things should I be considering? Any inputs or recommendations are sincerely appreciated!
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kmrbailey: Sorry that you have joined us in the Paget's club. The standard treatment for Paget's is either mastectomy or lumpectomy (removal of the nipple, areola and a margin of tissue, and then having radiation therapy.
Since you didn't mention radiation therapy, I am wondering if you were told that it was needed. For me, that was the game changer. I didn't want rads if I could avoid it, and by having a Mastectomy (MX) I didn't need to have it. Plus for me,, the MX revealed that there was underlying DCIS which had not been detected on any of the imaging studies. Most patients (97%) have underlying DCIS or IDC,,, you could be in the 3% who has pure Paget's, or like me, yours has not been seen on imaging.
I personally do not think you are being too radical. I made my choice to have a MX, not knowing at all about the underlying DCIS, so I am very glad that I made the decision that I did. Remember it is your body, and you choose what you want to do.
Please feel free to ask my any questions that you have.
glennie
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kmrbailey: just healing from my mastectomy with direct reconstruction 18 th of april. Normal mammo, ultrasound, enlargement of nipple-areola on MRT. Didn't dare to keep my breast (41 years old, three kids, married, not emotionally attached to my breast etc). Got the samt reaction from both friends and professionals (doctors). Butafter choosing 'my path' everybody supports my descision and I really feel that for me it was the only right choice. i have my post surgical meeting / report next week and before that I really can't fullt enjoy but I hope I don't need and more treatment, and as for exempel Glennie and ilaam DCIS is the "worst" scenario.
Trust your feeling. Make your descision. Best of luck! We are all here for you
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Glennie,
Thank you! Yes, I should've mentioned that the doctors did indicate that if I went with the lumpectomy, there would be radiation to follow. I am of the same mind as you in that I do not want to go through radiation if I can avoid it. I have a couple of surgeon appointments later tomorrow and Friday so I will discuss further with them. I just wanted some validation from those in "the know" that I'm not going too far for no reason. I'm not confident that I would be in the 3% with Paget's exclusively so I'm still feeling that for my own peace of mind, I should proceed with the MX.
Thank you again - I'm sure I'll have a million other questions. I sincerely appreciate you sharing your experience.
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Operaeva,
My sincerest best wishes for a speedy recovery. Seems like you're well on your way! Thank you so much for sharing where you are coming from. Like you, I am a mother. I have a 17 year old daughter who will graduate high school next year. I want to do all that I can to ensure that am in the best possible health for that big day and beyond. There is a busy year ahead for her and I want to be there to support her without worrying what may be around the next corner. I do feel that my friends and family will support me no matter what I ultimately decide but they continue to question me and there are times when it makes me doubt myself. However, in connecting with this group, I feel like you all have "been there, done that" and can offer real life experiences to help give me additional perspectives. Thank you so much!
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kmrbailey: I will tell you that I had to argue with my surgeon about it. He seemed to think lumpectomy and rads was the way to go so that I could preserve more of my breast.(JMO: men put too much importance on breasts, ok?)
I have small breasts and I felt that once you sliced off the nipple/areola complex,, well, how would that look? Like the underside of a plate? A volcano with the top blown off? (Please excuse my imagery,, but it's what I used) And I definitely did not want to have to have rads 5 times a week for 5-6 weeks. I have really sensitive skin and I feared burning and other problems. Also, once you have rads on one side, you can't have them again. So if you have a lumpectomy and rads now,, and if you unfortunately have a recurrence,, you can't have rads again on that side. And rads have side effects: fatigue, skin problems, increase risk of lymphedema and increased risk of other types of cancer in the future.
Please don't think I'm "pushing" MX!! I don't want to come across that way. But if you are looking for "reasons" to tell your doctor and family/friends WHY you want to have a MX, the above may help???
BTW: I'm in the medical field,,, and I know my surgeon from around the hospital. Even so, we argued for 20 mins on the phone about the type of surgery I wanted. In the end,, he told me,, his wife, who is also a doctor, would do the same thing that I want to do. BAM!
So, no,, I personally do not feel like you are having too much surgery. It's your body. Do your research and do what is best for you.
Also,, think about reconstruction. Do you want it or not? You don't have to decide now, but you may want to think about it,, if you definitely don't want it,, tell them no excess skin. If you want it,,, they will leave skin for the recon,,, or if you are on the fence,, they can leave the skin,, and you can have a simple surgery later to remove the skin, if you decide later not to do recon.
All the best. Please keep us posted. We are here for you.
glennie
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Glennie and others:
I'm also working in the medical field as a general practioner. Every collegue woman I asked would option for mastectomy. Beacuse what we do are profylactic mostly. To reduce risc in the future. Though I believe lumpectomy (in pagets I think it should more of an central sector rather than nipple complex to catch DCIS) with rads is safe, I see differences. As you stated Glennie, all the negative things with rads (I'm also thinking of possible lung fibrosis and heart failure), need for examination with mammo/ultrasound/mri every year (?) with fear, cosmetic outcome (I had direct to implant surgery) and the fact that risc adds upp every year and is lower with mastectomy ( I read thru a lot of reports let me tell you ...).
Do you research, ask around and look for the best surgeon!
In Pagets with normal mammo, ultrasound and best case scenario normal mri you're actually not in a hurry to make a descision! Take your Time!
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Glennie,
I too have small breasts and have the same thoughts - you remove the nipple/areola and what do you have left? Thankfully I do have a female breast surgeon and she understands my thought process and will perform whichever procedure I am comfortable with. So for that, I'm grateful. The more I think about it, I really don't owe explanations or justifications to anyone besides myself and my surgeon but I do want to reconcile in my own mind that I'm thinking of every possible angle and I am doing what's best for me. As for reconstruction, at this time, I do think I will do it. Again, I want to do this all in one fell swoop. Today I have an appt w/ my plastic surgeon and we'll go over reconstruction options. One step at a time.... :
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Dear all, and a new question to ilaam.
Today I hade my post surgical meeting/report. Pagets spread in the nipple, nearly invasive in the nipple.
DCIS grade 3 without invasion in the center of the breast, under the nipple-aerola complex.
All radical beacause of the mastectomy of course. Sentinel node negative!
I feel like winning the lottery! Just caught this litle "bastard" in time, grad 3 is no good from what I understand.
ilaam, where was your DCIS placed, one ore several, grade,how big was it?
I'm wondering what makes a surgeon plan for mastectomy on a young woman with Pagets. Safety for future, I hope. I faught a bit for mine, and feel really happy with my descision.
Love to you all. / Eva
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Hi Operaeva, I'm very happy for you; These are very good news and I hope you will never ever have to deal with it again!
I don't remeber exactly the sizes but it wasn't big, let's say all of it was less than 1.8 cm (they removed 1.3cm in the first surgery and there remained some millimeters which were removed during the mastectomy) and pagets was on all the nipple and part of the areola. After the mastectomy, I was told that we made a good choice by removing the whole breast because they found another small DCIS in another area which didn't show in any of the scannings and of course the first post surgical report (after nipple areola removing) couldn't guess that too. That's why I'm happy too with my decision. I don't think of it anymore because I'm sure every little bad cell was removed. My DCIS was grade 3 or high grade. I read that in young women the grade is often high. It is true that lower grades are better BUT in DCIS the grade doesn't matter. That's what my surgeon told me when I asked. The grade tells how fast cells can grow and spread and as in DCIS the cells are biologically unable to spread, whether they're high or low grade the treatment is the same and after the surgery if we are clean it doesn't matter at all, as long as we catch it when it is still dcis and not invasive, which is the case. It is important in invasive cancers and impact the choice of the treatment. I don't know about the surgeons recommandations, obviously, each case is different. Mine advised me to remove the whole breast so we can be sure everything is OK and he mentioned the possibilty of finding another DCIS site. You did the right thing and let's not forget that the sentinel node biopsy is another advantage of mastectomy just to be in peace after the surgery. That's you're case and I'm very happy for you even if it is expected as DCIS doesn't spread out but this confirms the results.
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How are you all doing? kmrbailey? Just checking in today.
I'm ok, healing slowly.
Getting strength back physically and mentally, more freely can move my operated breast/arm.
Haven't been thinking a lot about cancer since my operation! Feel quite safe right now. Oppositie to the month before surgery when I was fearing it.
I really want to thank you all in this community (Glennie, the first one to answer when I wrote in the middle of the night, quite desperate!). It has made this journey less fearing and I never felt alone!
I try to look at all the positive things in my life and have promised myself I will try to bring them out more in the future!
Please keep us updated!
/Eva
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Eva, All,
I'm so happy to hear your news! I'm looking forward to getting to the "other side" of this as soon as possible. As for me, I've had to take a break from focusing on myself as my 73 year old mother (who lives with me) was diagnosed last week with lung cancer that has spread to her brain. Like they say, when it rains, it pours. We are in the midst of mapping out her treatment - radiation, chemo, possible surgery. Needless to say, it has been a whirlwind and stress levels are through the roof. However, I have an appointment with a new plastic surgeon (I did not like the one that my breast surgeon had recommended) this coming Tuesday. I'm hoping this one is a good fit and I can schedule a date for surgery. It will be a cancer infirmary at my house between myself and my mother! Thankfully have a large and very supportive family. And of course, you folks here. Just knowing that I can come here and "converse" with women who are or have gone through the same thing really gives me comfort. I am very grateful.
I will let you know what happens on Tuesday - my fingers are crossed that I will be able to move forward quickly!
Kristen
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((Kristen)) you have a lot on your plate! Hoping that you like this new surgeon and you can get a plan in place for your mother. That is so hard that you both are going thru this at the same time. I'm glad you have local people who can help. And we are here for you to rant and rave and whatever support we can give you in this virtual world.
Eva: glad to hear that you are doing well!!
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Best of luck tomorrow kmrbailey!
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Hi kmrbailey, I'm sorry you've joined our Paget's club. I've been in nearly a year. I know you have a very hard decision to make and all I can say is you have to choose what is right for you and no one else. I choose a Lumpectomy but did not get clean margins. I decided to go back for a BMX instead of deal with the constant screens going forward. (Nothing of mine came up on any Mammo, MRI or ultrasound) The journey has been tough but I know I would have made the same decision again. Trust in yourself and best of luck to you!
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Hi ladies,
I hope you're all doing very well, spending great time and fully enjoying life
I have a question : after going through mastectomy (and optionally reconstruction) with reassuring post surgical report, what signs should one pay attention to. For examples, all women should perfom monthly self breast examination to check that there are no lumps. In my case, it is the nipple shape, color and sensibility that draw my attention to Pagets. Now, that the nipple is removed as well as the breast what signs should I be taking serious? Maybe some of you had instructions from their BC specialist..
A more general question in the same context, have anyone of you been advised by her BC specialist to adopt a specific lifestyle or avoid specific products/habits? I've already found a ton of advises on internet. Unfortunately, they are not all feasable, seems that every thing causes cancer lol.
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ilaam, I am in-between Breast Specialists....mine left the practice right before my 6mo checkup. I didn't like her much anyway...so made an appt with an oncologist. He told me that DCIS and Pagets were both considered stage 0. He said with mastectomies (i did prophylactic on the right) I have a 1% chance of recurrence... He felt followup yearly was appropriate and seemed surprised that my BS had wanted 6mo checkups.
Texas Oncology has a new BS coming to my area in Sept...so I will definitely ask her when she gets on board. In the meantime I do self exams for any changes. I'm trying not to worry about recurrence but be mindful of changes!
The diagnosis of cancer is very stressful...however, early stages for DCIS/Pagets make the prognosis very good! This doesn't minimize the stress and difficult decisions we face, btw!
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Hi everyone!
I found my Pagets in feb this year.
Mastectomy with direct reconstruction 18 th of april. Right now, pain free. But... struggling with a wound infection. Antibiotics and prayers..... You don't want a spread with an implant... Which by the way, looks really good! So - wish me all luck!!!
Concering 'signs' of recurrence ilaam and lessharp, I'm thinking mammo and ultrasound should cover this! Mri if something is concerning you!
1 % sounds execellent!!! I really think Pagets, for us with DCIS, is a gift! It's like a sign from above, telling us that something is wrong in the breast, and you can catch it in time.
Maybe I'll be more nervous ahead, but right now, I'm actually thankfull for Pagets.
My sister had another journey, found her BC late (no pagets). Invasive....
Concering lifestyle. I'm thinking less stress (!), less weight (if over weight), healthy food (looking in to Paleo and raw food right now)and truly listening to your heart what want in you life.
Not like a doctors advice, but I think these things matters!
Love to U all!
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lessharp : absolutely true about the stress thing! I hope that yearly mammo/ultrasound can detect things in their beginnings with precision.. my fears are if something bad happens I would know it late, as operaeva said Pagets was a gift, I wouldn't have treated my DCIS now if I hadn't Pagets. I also think that 1% of recurrence risk is very excellent! keep us updated when you meet the new specialist..
Operaeva: first, I am sorry for your sister and I wish you get rid of the infection as soon as possible and keep thankfull, you shouldn't be nervous, I am not very stressed but the question comes to my mind when I shop on the supermarket, when I choose makeup or cosmetic products, when I'm on the phone.. because I haven't found answers and I don't know which side should I trust, people saying there's no proof that deodorant causes cancer (maybe they have financial benefits) or people saying it's very dangerous.. that's one of millions examples. Thank you for the tips I already do some like practicing (I'm not overweight but it is necessary), I try to eat healthy but I can't buy organic vegetables all the time so I rinse them with baking soda, I don't use plastic etc and I made my own deodorant, I try to minimise my exposure to chemicals and I hope this will help me staying healthy and that I'm not making my life harder about nothing.. The biggest problem is the stress, it is an unconscious behavior and I only try to relax when I realize it and I let go whenever I have problems when I remember that this could make me loose my life and this helps me a lot at least in being happy all the time. It is paradoxical but yes I'm more happy than before. Sorry for being so long but I really want to share everything with you.
hugs to you all
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I was trying to read through the posts here, but I haven't managed to read very many.
I was told the diagnosis a few days ago that I have Paget's and DCIS. They have done quite a few mammograms and are not finding any tumor behind it. They tell me there are calcifications in the other breast to watch, but I guess this is what we are dealing with so far.
I'm scheduled for an MRI, then a consult with an oncologist. My surgeon (he's great!) wants to hopefully try just radiation if the oncologist agrees.
If I can avoid surgery and especially avoid chemo that would be great. But only because I'd recover more quickly and I don't react well to pain meds, and tbh am a little afraid of going under anesthesia because my body doesn't react normally to anesthetics. As far as losing part or even all of the breast, it wouldn't make me jump for joy, but it's a minor concern in the overall scheme of things. So - if it's very much more prudent, then if would be willing.
I'm not sure what else to say. I've watched this thing peel and bleed, and get ALMOST better (recently it finally seemed really almost normal) and had some flaking on the other nipple (actually I had what looked exactly the same on the other side for six months, then it went away, about six years ago) ... so I really didn't think this was Paget's but thought it was a contact dermatitis (cotton bras make it better, anything else makes it worse) or excema or something.
I hope what my surgeon said turns out to be the case. I've been told this is very treatable. I won't lie though and say that I'm not upset at the idea of being taken away from my husband and daughter.
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Anniemae, sorry to hear about your diagnosis I hope everything goes well for you, it would be fantastic news if you can get away without surgery or chemo. Good luck to you, and keep us posted.
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Anniemae, sorry to hear about your diagnosis I hope everything goes well for you, it would be fantastic news if you can get away without surgery or chemo. Good luck to you, and keep us posted.
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Hi all, yesterday I was diagnosed with having chostochondritis, inflammation of the cartlidge, I have a lot of pain but it could possibly be Tiezs syndrome as I have a lot of swelling on my rib cage, I have had this since August but they couldn't find out what was wrong, they are now sending me for a bone scan to see if its related to the pagets. my question is, have any of you also suffered with this?
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Hi Anniemae,
Paget's is weird that way, mine also "pretended" to heal, especially when I wore cottony clothes, too. It's probably because this is when it's warm and you go outside and lots of fresh air and movement give your immune system a boost so it can tackle those wayward cells for a while.
If there's really nothing behind the affected nipple, your prognosis is excellent - but it's still pretty good if they discover underlying DCIS, so I would not worry about passing on the baton sometime soon. Go, get treatment, live your life, enjoy being with your loved ones while taking appropriate care of yourself.
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so glad I read your post. I had a lumpectomy for grade one invasive ductal cancer. Also DCIS. Will finish radiation tomorrow. But my nipple is a little larger than the other, itchy or stings, red with purple around it and had flakes on it . My rad Dr took has taken photos to compare my breast during stages of treatment. I don't know if this is from radiation, but also had residual pinkness after the blue dye for the sentinel node biopsy faded. Googled nipple problems with breast cancer and am feeling nervous now. Will talk to my Nurse about this tomorrow but is it possible to have symptoms like this after treatment is almost done????
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Well I've been MIA for a while - have had to tend to my mother's brain/lung cancer treatment. While it has been busy, it was a good distraction leading up to my surgery. I had my left breast MX last Thursday (23 June). Had my first post-op doctor's appt today. All looks good so far. One of the two drains were removed with the second one likely to come out over the weekend. Pathology shows DCIS stage 0 and the lymph node tested negative. ER+/PR+ so follow up with the oncologist regarding ongoing treatments. All in all, so far I've been fortunate. I'm grateful for this group's support particularly when I was first diagnosed and had no idea about anything. Knowing that you all are here to share your experiences has provided me comfort. Even just reading through old posts or keeping up with the new ones - it's good to know I'm not alone. I do have one question - one of my cancer nurses indicated that I would likely talk to my oncologist about genetic testing. Is Paget's genetic or has anyone gone down this path? Just curious....
Thanks!
Kristen
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Welcome AnnieMae! Sounds so familiar: peeling, bleeding, almost getting better...and then the bra, the t-shirt, the shower water, etc rips the skin off and it starts all over again.
Kristen, congrats on the pathology! I had the genetic testing done, because I'm very young. Thankfully it was negative. Like other breast cancers, there can be a genetic component, but they don't test everyone. They will probably recommend it if you're young or if there's a lot of cancer in your family.
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