Paget's Disease of the Breast

Hi illam,

I would like to thank you so much for your answers. It means a lot to me! Especially today, since you describe all that I right now hope for!!!

I'll be sure to massage and strech/ move the arm, about three weeks post op they said.

I still have the drain, probably removed in two days. I had a so called adm (acellular dermal matrix) inserted in the lateral / outer mammaryfold to achieve a more natural look (maybe) and cover the implant more. But side effects are more fluid.

Why did you do the biopsy on the healthy side? Just to check?

The good thing with Pagets is really that this isn't, as you wrote,the 'bad stuff'!

Many of us will be considered cancer free after surgery or surgery with rads. Recurrence in the same breast is 0-5 % after mastectomy, 1-2 % risk per year if you choose breast concerving/nipple areola and a sector with rads. Since I'm fairly young and the fact that Iwanted to avoid rads, made me choose mastectomy.

Though I now realize that mastectomy is big surgery and demands adaption to a new body.

My only concern, besides cosmetic and the process of accepting and adapting to the "new me"is that the surgeon left parts of my areola. He did this to be able to make a more natural nipple reconstruction he said.

Does anyone know if it may be a risc concering Pagets returrning if I keep the areola, a couple of mm?

I know the nipple, but also the areola, contains special cells, that's where the Pagetoids cells canderive from. Clear cells, Toker cells amongst others.

But Pagets isn't a scin cancer but a breast cancer with mostly DCIS or ductal cancer behind. And I guess the recurrence would be of breast orgin?

Again, thank you all for beeing here!

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

Hope all goes well for you, yes let us know how you get on.

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

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.

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

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.... :

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.

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

Best of luck tomorrow kmrbailey!

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.

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!

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.

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.

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.