Paget's of nipple and other areas of breast

Hi @mittd, welcome to the Breast Cancer group. As you likely already know, Paget's is a rarer form of breast cancer. Here's some information about it https://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/symptoms-causes/syc-20351079

How was your breast cancer discovered? What treatments have you had?

Paget's of nipple and other areas of breast
New member: Bennet Breast Center in Maine Biopsied nipple- confirmed Paget's. Have two areas (lumps) on same breast(L). Ultrasound biopsy scheduled 3/20/23. Genetics consult via telahealth 3/22/23. Doc says expect surgury, radiation and chemo. Mother at age 50, Aunt (70), cousin (65) terminal BC. I am 65 with little information to go on. This site has been very helpful. Gathering/absorbing information and writing lots of notes. F/U with doc on 4/3/23 to discuss surgery and options. Suggestions, advice, what to ask in the early stages of diagnosis (pre-surgury)?

Hello @sequoiatree and welcome to Mayo Clinic Connect. I found member @debraw who shares your diagnosis and may be able to come back and tell you more about her experience since her diagnosis so the two of you can compare notes going into your appointment in a couple of weeks.

You mentioned your family history. Did they also have a Paget's diagnosis?

Hello I’m also a new member @debraw. I’m 70 yrs old and in excellent health besides this new haunting diagnosis . Suspected Paget’s 1yr ago with negative mammograms and ultra sounds ( no biopsy then). Confirmed Paget’s disease of the nipple ( Jan 2023) non-invasive with surgery scheduled for April 7 ( nipple and areola removal/ lumpectomy) MRI does not show any mass behind or lymph involvement. Pathology after surgery will determine my decisions forward . Drs say I will need radiation and EI. No breast cancer on my mother’s side of the family however on my fathers side yes ( Aunts, cousins, 2nd cousins)but I was always told that fathers side doesn’t matter. I’ve always had “dense” breast tissue and small benign cysts.
I’m comfortable with having the surgery to remove the cancer but totally freaked out by getting radiation and having to take EIs. I’ve always tried hard to keep toxins and chemicals out of my body ( but I guess it didn’t make any difference I still got breast cancer). I’m strongly considering no radiation and trying the EI. Do I really need radiation or is that over-treatment?? Trying to find the statistics for that decision. At this age I’d be happy with 10 healthy more yrs to live an active lifestyle rather than choose to be sick with radiation and the EIs. Currently I’m in the best health, very active and feeling strong and energetic. Doing my best to stay positive but still in shock and at times feel hopeless that my healthy lifestyle didn’t really matter anyway. Cancer is the luck of the draw.

I am sorry about this shock of a diagnosis. It can really pull the rug out from under your feet. I am glad @sequoiatree and you can share notes. I remember feeling like everything I did to avoid cancer and stay healthy was pointless, but I was reminded that being healthy helped a lot when going through treatment and leads to better outcomes.
I do not think you are in a hopeless situation even though shock can leave you feeling this way.
I would also let you know radiation isn’t that hard and when it is done, it is done. I had it for 6 weeks and my husband had it for 5 weeks. Mostly it makes you really tired. There obviously can be other side effects but radiation has come a long way. In the years between mine, and my husbands last year.
What is it about radiation that worries you?

Thank you for your response. I have no other family info. With a friends help, I have started reshifting my focus from anxiety and fear to meditation and conscious breathing techniques. I used to have interest in these things before getting absorbed in my career and i just retired. So thinking my silver lining might be my getting back on this path. There will be days of fret but I hope to keep practicing and learning self love, calm thoughts and love.

I am a new member (@ahs7755) and I was recently diagnosed with Paget’s Breast Cancer. The diagnosis was made from evaluation of a skin shaving from the nipple of my right breast. After I received the diagnosis I felt a lump in that same breast. Because the biopsy was done by my dermatologist, the diagnosis of Paget’s was available when I saw the surgeon. At the first meeting the surgeon said that the best course of action was a mastectomy. The surgeon indicated that a lumpectomy was another option but that it would result in a donut shaped breast that would not be aesthetically pleasing. Additionally, the surgeon said that further biopsy of the lump or information regarding the stage or infiltration of the cancer would not change the recommendation. The additional testing would be done on the breast tissue and lump following the mastectomy. Is this the standard of care for Paget’s or would additional information about the cancer be important before having a mastectomy? I had an MRI today and expect additional information will come from that. Additionally, I am scheduled to see the Medical Oncologist 4/11 and the Radiation Oncologist 4/13.

Welcome, @ahs7755. According to Mayo Clinic:
"If you have Paget's disease of the breast, you will likely need surgery. The type of surgery depends on the condition of the skin around your nipple and how advanced the underlying cancer is." Read more here: https://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/diagnosis-treatment/drc-20351084

I moved your question about treatment options for Paget's disease of the breast to this exisiting discussion:
- Paget's of nipple and other areas of breast https://connect.mayoclinic.org/discussion/pagets-disease-of-the-breast/

I did this so you can read the previous posts and connect easily with members like @mittd @sequoiatree and @debraw to hear about their treatment decisions.

Are you in favor of having a mastectomy or would you like to explore the options of a lumpectomy?

I definitely would consider a mastectomy. I am more wondering if surgery is the only option for the cancer or are there other options. As the Mayo information states the type of surgery depends on how advanced the underlying disease is and that is unknown at this time and would not be known until after the surgery based on the surgeon’s recommendation.

Thank you for connecting us. It’s amazing to me how every diagnosis/situation is so uniquely different. I’ve been told that removal of my left nipple and areola will be necessary and probably radiation but that will depend on the pathology after surgery. Also EI after surgery for 5 yrs.
Since I’m told it’s stage zero, non invasive and no other mass or lymph involvement detected on the mri that “I’m lucky” (??) I caught it early ( 1 yr ago it was suspected)
I’m interested in knowing if radiation is over- treatment for my age & situation and if the risks and side effects of radiation are worth it. Im considering not having radiation and just trying the EI. I’m 70 yrs old. What does the research say about cancer return rates with and without radiation? I read that it’s 9% return with radiation and 19% without radiation and that it might not be necessary for someone my age and situation to have radiation or chemo. . I’ve also been told mastectomy is not necessary in my case even though I’m willing to have both removed if it eliminates my risk of cancer returning. Is there any guarantee if both are removed? If it does come back then my choice would definitely be to remove both. Every situation is so different how can there even be the same “protocol” for everyone?
15 yrs ago My friend had lumpectomy/radiation/chemo/ EI and now cancer just came back in the opposite breast and she just had a mastectomy on the new side but wanted both breasts removed . She was told that the since the first breast already had radiation and chemo 15 yrs ago that it could not be removed because the radiation thins the chest wall.
I’m so confused that I don’t want to think about it any more. Just get rid of the cancer. My surgery is in 2 weeks. I’ll just have to wait for the pathology to meet the oncologist to see what he/she says. I’m leaning toward NO RADIATION…wait and see if cancer returns the chop them both off!