Pagets breast cancer right nipple..anyone have it?
In Dec 2025 I saw a bit of bleeding redness discharge in right nipple.
January 2026 ultra sound and mammogram negative for cancer.
A breast surgeon did a biopsy last week since it never heals, and pathology report says Paget's disease, BUT my nipple is NOT inverted, in fact it is completely erect larger, the opposite...weird.
I'm newly 60, an avid tennis instructor, runner, tennis player, fitness person, etc..now my life has stopped. Physical fitness and sports are all I know, all that really give me great joy to live.
I haven't met with my Breast Surgeon yet who 2 days ago told me on phone she would do a lumpectomy remove my nipple, with radiation, after looking at an MRI, which I had yesterday.
I haven't had my consult with her yet, she is not an oncologist. I heard Mayo Clinic was a leader in Paget's breast cancer treatment, as it is very rare, I am told. The other really good centers for rare brest cancers are in CA, TX, FL..too far for me since I live in MD.
My cancer according to the pathology report, is very aggressive, but supposedly Stage 0, growing fast.
I am getting a second opinion with another Breast Surgeon at John Hopkins, since I live in Maryland, about an hour from Baltimore.
I would welcome any questions I should ask my breast surgeons about surgery, ie. lumpectomy vs mastectomy, and treatment when I meet with them in next few weeks.
I don't have any family in Maryland and I am single, so feeling afraid and alone, and hope to join a support group here.
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@mimi09 Thank you this is really helpful to read. It's daunting no doubt. I finished radiation in June. It's sad there is no treatment to prevent recurrence, but gosh you went a long time without recurrence. I am happy you got so many quality years after first diagnosis. My grade is 3 and I am HER2(3+), ER/PR negative, so I know my prognosis is worse than others and I know my recurrence rate is higher. I did try to establish a regular visit with a priest, but he seemed disinterested and kinda dismissed me, not wanting to even hear about cancer fears of death, etc. so I stopped going to that church. Now I just ry to pray the chaplet daily, and just go to another church on Sundays to feel a bit of hope faith for life after death. I do belong to 3 support groups with Mayo, John Hopkins, and they help a lot. I'm back to work, will always be single and living alone, and just hope for the best..whatever that is. For certain I know I will not take chemotherapy if it recurs, so I will just let go and let God at that time. Your message gives me more hope that I had yesterday. If I can even live 5 more years and take this long cross country train ride and do a few more things with my adult kids and family, that would give me peace in the end. wishing you peace
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1 Reaction@tinamaria1 Always try another avenue, doctor, priest, religion, whatever anyone suggests. Think then either act on it or don’t. It’s your body, breast, life.
My husband of 57 years has divorced me and convinced his attorney, and our adult kids (55, 53, 45) that I should be institutionalize. Just two weeks ago, he left me a VM that “because you were a psychology major (in 1964-68!!), you knew you were taught about TBI…about concussion”…”to damage me and to hurt me and to kill me if possible. It is clear and unequivocal.”
Of course I sent the audio as well as a transcript to his attorney who responded, “I see nothing wrong with that voicemail message.” 😳🤮
Now I just play the hand that dealt me each day and pray for the best. I only wish my 9 grandchildren would respond…💔
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1 ReactionI'm tagging @tinamaria1 to make sure she sees your question.
@jewels1816, when will you have surgery or has it happened already? How are you doing?
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1 Reaction@colleenyoung I had surgery last Tuesday. Doing well. Not really any pain. Incision was scary to see for the first time. I thought it would look better. I mean it's not terrible but I've had augmentation and my incisions are nice and smooth so I was expecting that. My pathology report came back as DCIS also, high grade but all margins clear. I will still need radiation. I have an appointment in a few weeks to find out that plan.
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2 Reactions@jewels1816 My very best to you. It will look better one day, just not today! I looked the first time and said “Let me know when you’re (the incision) feeling better. I’ll take another peek then,”
Life is what you have to deal with, Grace is how you handle it. Hugs for you as your Grace increases!
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1 Reaction@colleenyoung hello, I had surgery in the spring 2026, 19 days of daily radiation with 4 boost days ended in june2026, played tennis and jogged/lifted 3/4 times a week all thru it, was not tired...to date, no issues with surgery or radiation. My skin did peel off under my arm pit area, I did have to put a daily moisturizer on it and lots of sunscreen when outdoors, but no pain. mine too was dcis stage 0, BUT grade 3 (ugh the worst), and i am HER2(3+), an ER/PR negative, so no treatment to reduce recurrence for me..it is scarry, I know my prognosis for recurrence, etc. in general, because of my biomarkers, is much worse than others, much higher rate of recurrence, shorter survival rate.. Doctors like to cherry coat and show the best possible outcome, but knowing my true prognosis based on my unique biomarkers, gives me more peace because i can plan better my future..take care dear
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3 Reactions@jewels1816, when you have your next appointment, ask your surgeon about scar (self) massage and ask about silicon scar tape.
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