Paget's Disease of the Breast

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.

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.

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))

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.

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.

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

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.

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 ☺

Will be thinking good thoughts for you, ilaam.

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,,,

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

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

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

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

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....