Paget's Disease of the Breast

ilaam

Hi again,

Sorry I should have edited maybe my last post to add a question. I don't know the policy of the forum. Anyway, just a reminder, I am going to have a mastectomy with immediate reconstruction (silicon implant) in the right side in three weeks. I am 25 and I have an A cup. I always wanted to have a little bit larger breast but I never wanted to go through surgeries. Now that I will do it anyway, I think of telling the surgeon to put a B cup implant in the right side and to add a small implant in the left side. In other words, I want to take advantage from the mastectomy/reconstruction to go from an A cup to a B cup. If I will be obliged to change my implant every 10 years and go through surgeries different times, it is much better if at least I have the size I always dreamt of. I barely accepted my breasts because of their size and now with the scars and I don't know how the implant will look like but I don't think that I will like them anymore. Having more volume will add a good side to the whole procedure. There will be s.th that makes me glad. I'll look forward to see how my breasts changed and I'll consider the result as an improvement rather than a sacrifice and a loss. I also found that adding a little implant in the intact side will help make the breasts look more similar with aging. I will see my surgeon to discuss this before the surgery day and I'll try to convince him. I don't know yet if he will accept and what will be his recommendation but MY QUESTION IS : Do you know girls who have done this before, is it feasable I want to say? From a safety point of vue, do you think this could place me in some danger e.g. causes cancer in the healthy breast or distort my future MRI results in the healthy side? I thaught of double mastectomy but I don't really want it because of the sentinel node biopsy side effects and I assume that. Any advices/opinions/thaughts are welcome. And another request, what question should I ask before the surgery. I'm writing down any question that crosses my mind. During my appointment I haven't said a word, it's like I was unconscious. For example, I didn't ask if the mastectomy will be skin sparing or no, things like that you know. Thank you in advance.

Sorry also if I am posting in the wrong place. This thread is becoming the first place I go to when I have troubles.

glennie19

ilaam: I do not have answers for your questions, as I didn't have reconstruction. I would suggest starting another topic over on the Reconstruction forum, and asking your question there. Or maybe on the surgery forum.

glennie19

pdj: sorry that you find yourself here again. Paget's almost always (97%) has an underlying other cancer,,, like DCIS, or IDC. How this changes things for you, since you have already had cancer in that breast,,,and had a MX,,, I have no idea.

I take it you had a skin-sparing MX,, since you still have your nipple, right?

I would also go over to the forum Diagnosed with a 2nd or 3rd cancer,, and ask your question there.

pdj

glennie19: Thank you very much, you are very kind.

Yes, I had skin-sparing MX and I have still my nipple.

glennie19

Could be that there were stray cancer cells left with the skin-sparing MX,, and eventually they migrated to your nipple?? Or like your doctor said,, you just are unlucky enough to have a new primary. Kinda sucks that you had skin-sparing for good recon, and then get Paget's and have to lose your nipple now. ((HUGS))

ilaam

Thank you glennie, done

hoping42

Hi there everyone. It has been awhile since I have been here, but check in once in ahile to see if I can help in anyway as others did for me. I also had a clear MRI-other than the DCIS that was found by routine mammogram (calcification)-followed by more films and ultrasound, followed by biopsy-followed by lumpectomy/SNB-which included a punch biopsy )because after finding the dcis-I knew that the itchy, cracked nipple was more, though NO ONE thought it was anything by the way it looked- I insisted-I am glad they listened)-followed by a BMX. I just celebrated my THIRD "get my life back day"--the day of the biggest surgery. I took 3 weeks off work, but ultimately had 4, because I am a teacher, and the 4th week was spring break. best advice-advocate for yourself and take the time YOU need. It will be different for each person. I took 4 days after the lumpectomy/SNB. I am sending positive thoughts and healing wishes your way!!!! Hugs, too!

If you gals don't mind--I just need to vent a little-and cry a little too I guess....

I do have some very sad and troubling news in my own world. My father passed away from acute AML leukemia just before I celebrated my one year "get my life back" day in February 2014. My beautiful and wonderful mom that beat stage 3c er/pr+ breast cancer 7 years ago, but was diagnosed with a new primary cancer-NSCLC lung cancer and passed away in May 2015. I lost both parents to the cancer beast in such a short time. I still reel with heart ache and blessings at the same time. The other piece is that my sister was diagnosed with stage 3a nodular melanoma last January (yes while our mom was battling her own)--My sister received a month long (20 infusions) of interferon followed by 3 times a week injections of it for a year. She is two weeks away from being done!!! I am amazed with her strength and her courage! She is a rock star. I did get the BRACA test when I was diagnosed (since my mom had too) and it showed that I do NOT have the gene mutation. I was er/pr- not + like mome and Her2 +++++ Now, with all of the crap that has happened to our family, my sister and I are looking into more genetic testing. Scared and wondering what I will even do with such information. I am baffled and it is soooo scary. I have a 14 year old daughter that I need to protect and my sister has a biological son who is 16 and an adopted girl (from China, she is 11). When we sold our parents house, (our dreamy childhood home), it was checked for radon-nothing significant there either. The doctors think that we are "sporadically unlucky"--I have a different word for it---but I want them to be right. None of the cancers are seemingly related--yet we are! I just needed to vent and thanks for that. Hitting me kind of hard today----but also celebrate many, many things and do believe with all of heart that my sister will be here and okay for a tremendous amount of time!!!

Thanks again......for listening.

Faye33

pdj,

I'm so sorry you are dealing with breast cancer again. It is scary.

My story is very similar to yours. I was diagnosed with breast cancer in January of 2010 at the age of 33. Unlike yours, mine was bilateral. So I had a double skin and nipple sparing mastectomies with silicone implants. I also had IDC (1.5 cm) on the left side. In addition I had DCIS spread throughout my right breast. My IDC was grade 2, triple positive and 0/2 nodes, as well. I did chemotherapy (AC - 4 and Taxol + Herceptin -11 and Herceptin for a total of a year). I have been on Tamoxifen since summer of 2010.

My right nipple started flaking/bleeding in December of 2014 and I had a diagnosis of Paget's by March of 2015. I had a clear breast MRI right before my Paget's biopsy, but the surgeon did find under lying DCIS when she removed my nipple areola complex (NAC).

The probability of getting Paget's after a nipple sparing mastectomy is very small. The surgeon that did my Paget's biopsy believed my case was a recurrence of my DCIS from 2010.

I got two opinions as far as how to treat the Paget's. The first opinion was surgery to remove the NAC. The second opinion was to remove the NAC and do a sentinel node biopsy as well. I choose the most aggressive treatment with the node biopsy, which thankfully was clear. I had no further treatment after surgery other then I was advised to stay on Tamoxifen. I was told radiation may be an option if invasive cancer was found, but thankfully I did not have invasive cancer with the Paget's.

Recovery after surgery (I choose to remove both NAC) was relatively easy. It was/is hard dealing with the fact that my good reconstruction results had to be messed up.

Again I'm really sorry you are dealing with this and I hope everything goes smoothly for you with surgery and recovery. Keep us updated!

pdj

Dear Fayo33, thank you very much for your kind words and posting. Your story is important for me because it's similar with mine. I hope that you are OK now. I will let you know when I finished surgery on 21 March.

lou23

Sorry to hear that pdj, I hope your operation goes well, very often I hear all is good after removing the nipple as long as they get a clear margin. Let us know how you get on. Wishing you well.

ilaam

hoping42,

Thank you for sharing your experience. Sorry your loss. It is sad that you had to deal with these bad events but this is life. We don't recongnize how strong we are until we are face to such situations. When I feel alone and think that I've been cursed with cancer and that I'm less lucky to others, I always try to remember that it is not the worst thing that can happend. Anybody can lose his life anytime in a car crash, home accident, heart attack and too many things. Many people lose all their family members in car crashes which is so sad but that's it. There are many things we should be thankful for. I hope you and your sister are doing well. Keep going and celebrating all the good things in your life as you are doing.

Sending hugs to you, ilaam

glennie19

hoping: I'm so sorry about your parents. That is tough to take in such a short time period. That is a lot of cancer in your family, and I think you are wise to look into more genetic testing.

Hugs to all here in the Paget's world. I'm glad you all check in and give us updates on how you are doing.

ilaam

Hello,

I'm back with a question. From a safety point of view, what do you think of skin sparing mastectomy (SSM) when the NAC is already removed, given that I have high grade DCIS+ Pagets? The size of DCIS in the removed NAC is 1.3cm and I won't have radiotherapy after mastectomy. Would SSM increase the risk of local/regional recurrence in long term.

If anyone has links of reliable articles about recurrence rates and risks in DCIS+Pagets, I'll be pleased if you post them here.

hoping42

Thank you very much! I do count the many, many blessings in my life. There are just some days that are just more difficult than others-I guess I just need to vent a bit. Thankfully, we have a safe place to do that. But, it is SO true, one gains an appreciation like none other-- and find silver linings, the calm in the storm and all of those things that were just sayings-but now hold such meaning. Wishes for health and happiness for all!

lessharp

ilaam, not sure if reccurance is different with Paget's vs. Just dcis...but, I had mastectomies and no further treatment needed, according to my breast specialist of 25years experience.

I dont believe Pagets in beginning is much more than local, otherwise I would assume they would recommend radiation or chemo. If your node was clear...and margins clear, you should have best possible outcome...least chance of recurrence. It's easy to worry and dwell on the cancer...but you've most likely reduced your risk to far less than the rest of the women out there. Their chance of breast cancer is 12%... Ours after mastectomy is what? 2-3% ? Finish treatment and live your life! Be vigilant.... Pay attention to your body, get your checkups...but live your life ☺

ilaam

lessharp, you're absolutely right.. I never thought that way but that is true I know I know, I am accumulating the highly unlikely possibilities and I went so far with that thinking which is exhausting and that won't change anything. I try not to do but I have no brakes, I should stop myself lol. Your ansewer helped with that, thanks. It had the effect of "hey wake up you are going so far and wrong direction too".

There are exactly 7 days until the mastectomy so I don't know yet about clear margins and lumph nodes. I'll post updates here and I'll keep your words in mind. Hugs!

glennie19

Will be thinking good thoughts for you, ilaam.

ilaam

Thank you glennie, that's very kind

Operaeva

Hi everyone!

I was diagnosed with Pagets of my left nipple a couple of weeks ago.

Positive biopsy, negativ mammo +ultrasound! Will do mri next week.

Several doctors told me, this is not at all serious.... Beeing a doctor myself I understand the oppositie! The want to talk me into small surgery, maybe sentinel node, maybe radiation.... Hello!?

I decided on mastectomy with reconstruction- since I don'twant rads, and since I don't want to live with fear.... Mother of three, 41 years old.

What are my risk of cancer in my right, healthy breast? 10% as all woman? Should I remove both?

Need to talk and so thankfull for finding this site,,,

glennie19

Hello operaeva,

Sorry to hear of your diagnosis,, and I get your decision to have mastectomy to avoid rads. That's what I did too. The unknown about Paget's is the most have something else lurking beneath,, for me it was DCIS, which was not found until my mastectomy. As to your odds of getting cancer in the other breast,,, my doctor said the odds are not that much greater when there are no genetic factors. However,, if you are having reconstruction,,, you may get a better cosmetic outcome by doing both at once so they "match". It's a lot to think about. I would definitely do sentinel node biopsy to be on the safe side.

Keep us posted! ((hugs))

glennie

Moderators

Dear Operaeva, Welcome to the BCO community. We are sorry about your diagnosis but glad that you reached out to us here. While you are waiting for some members to respond you may want to check out the information on Paget's Disease of the Nipple found on our website. Stay connected here and keep us posted. The Mods

Operaeva

Glennie and Moderators! Thanx for answers.

My surgeon is very traditional, don't want to remove healthy tissue.... Have an appointment this thurs, i guess he at least has to listen to my wishes.... My sister and my aunt has BC so we Will do genetics, but I can't wait for that.... Probably Need to do my other breast later.... Than..... Why is MXso controversial?... At least in Sweden

Will do sentinel!

Hugs!!!!

glennie19

Many surgeons think women want to preserve their breasts no matter what. Like that is more important than your life? Not to me.

I hope he listens to what you want. Hopefully he will listen to you, especially since you are a doctor too!

glennie

Operaeva

Thanx for posting!

I also feel that mastectomy must be safer. There is no randomized study of lumpectomy versus mastectomy on Pagets.

Radiation results are poorer on younger women (I'm 41), has side effects and I believe it Will make me feel sick...

I also fear how I could cope living with parts of my 'sick' breast, especially hearing people with DICIS that had negative mammo, ultra and mri....

What's this crazy Paget's???Scares me a lot, and I want to make a radical descision to never ever have to face it again.

Love to all my breast-sisters out there

glennie19

My logic with choosing MX over lumpectomy with rads:

I have small breasts. By the time they take off the nipple/areola area and a decent margin, how much is left? Not much. I imagined my breast being sliced in half vertically, and thought,, why keep just a part of it? What would be left would look really strange, and I knew I did not want recon.

I really really didn't want to have rads and risk the side effects from it. I have very sensitive skin and was concerned about skin reactions, burning, etc.

You don't need chemo with Paget's (and not with DCIS if that is found), so MX is just surgery, recovery and done.

Since DCIS was found on pathology (none of my imaging showed it), I am especially glad that I had the MX.

glennie

Operaeva

Glennie! You are a very clever woman, that's what I think! And strong.

Thank you very much for telling and sharing your story! it has helped me a lot.

Operaeva

Part two is reconstruction or not. Most parts of me want it. So I decided to try it out, if I'm unsatisfyed I guess I can just remove the implant and go 'flat'.

//Eva

lessharp

Totally with Glennie on this one, for sure. I felt the same way....MX gives the lowest possible risk of recurrence, and avoid radiation. I did want reconstruction, so did prophylactic on the other side. My reasoning was I am WAY large breasted naturally and know I'd need surgery on both sides anyway to even things out. Plus, less chance of new or recurrent cancer.

I did DIEP flap reconstruction, which is amazing (but a big surgery at the start). I have some more revision to do on the shape and symmetry...but they are very excellent looking and extremely natural. I didn't want expanders (stretching out muscle seemed like a recipe for pain and complications to me). I just noticed my boobies jiggling the other day and got very excited showing my husband how much they felt and acted like what God gave me originally... I also have some limited feeling in my new set. Certainly not like before, cause I have no nipples...but the fat and blood supply want to grow new nerves.

Best of luck on whatever ya'all decide. It is for sure a personal choice...and with reconstruction or not....both can be done or undone later down the line.

Operaeva

Scheduled for mastectomy left side with reconstruction, hoppfully my implant direct, if it can fit, april 18.

The right side (healthy) the don't do automatically. Maybe later if I beg for cosmetic reasons or if we get results for BRCA positive. Just starting that genetic pussle....

pdj

(update) Hi again,

I was in surgery on March 21 and made the removal of the NAP. The operation lasted about 45 minutes and the next day I was at my home. After that was done histopathological and immunohistochemical analysis. The results were: Paget's disease. DCIS (high grade, comedo type); CK7+++, AE1 / AE3 +++; p63, SMA: +++ in a continuous layer of the ductus; E-kadrehin +++; GCDFP-15 +; ER-; PR-; HER2 2+.

Next week's scheduled meeting with a team of a doctor with a view to prescribing therapy. Onco-surgery didn't comment results but it is mentioned chemo as an option. This has me very worried and I consulted the otker clinics for second opinion and they said that chemo is not an option for Paget/DCIS.

I would like to hear your opinion and experience.

Thank you.