Paget's of nipple and other areas of breast

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.

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!

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.

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!

Oh my goodness, how overwhelmed you must be without all the information and everybody throwing everything at you. I know this feeling, I truly have been there with my own breast cancer. 💔
Please try to breathe a bit. I know this is such a terrible time but can you just tell yourself that you can wait until all the information is gathered before you decide on the next treatment.
Since I had my initial cancer diagnosis 18 years ago, I can tell you 15 years since your friend was diagnosed was a lifetime ago in term of breast cancer research and improvements in treatments, especially radiation.
We have so many advancements in treatments it feels like I was treated during the bad old days.
Do you feel like you trust the team of doctors helping you now? Do you have support that you can sit and talk and work through some of the hard choices and emotions?

This is SequoiaTree just checking in. I started with the Pagets/Ductal diagnosis the end of Feb. and have two other growths outside the duct and one of 2 lymph nodes appearing were biopsied with all testing positive. (Triple neg- stage III). On the plus side, the PET scan came back clear from other areas in my body which has provided me with some relief at this juncture. I have a portacath in place and will start Chemo this week and every 3 weeks for 6 rounds total. Following this, I will have another PET scan followed by mastectomy of both breasts with a flat chest contour (about 6mo. from now). Although I have a family history of my mother, aunt and cousin with breast cancer, the genetics testing showed no hereditary factors to my cancer/genes. My Oncology doctor and medical team through the Bennett Breast Center and CMMC have been outstanding which is of great comfort to my anxiety. The Mayo Clinic Forum has been my go to for daily information and support throughout the course. Thank you to everyone for caring and sharing.

What were your symptoms for Pagets? I read it is quite rare. Prayers for the very best outcome for you in your BC treatments.