Suzi's Journey with Paget Disease of the Nipple

Patient: Breast Cancer > Paget Disease of the Nipple

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Female, Age: 51, Stage I, HER2 Positive: Yes, ER Positive: No, PR Positive: No

  1. 1
    • Suzi
    • Experience with Paget Disease of the Nipple
    over 5 years ago
    Suzi's Avatar

    Diagnosed

    Oh No

    I had been having some pain (more like a sensitivity) on my right nipple for almost a year. I mentioned it to my general practitioner initially and she (in my mind) dismissed it as unimportant but offered to refer me to a surgeon if I wanted this. The referral never took place and I didn't follow up on it since my symptoms seemed to subside. At the beginning of July, I had some bleeding and what looked like a sore so immediately called back the Dr. and made an appointment to see a surgeon. I was initially treated with a topical antibiotic for a possible 'fungal infection'. This made no difference so a biopsy was done which was found to be cancerous.

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  2. 2
    • Suzi
    • Experience with Paget Disease of the Nipple
    over 5 years ago
    Suzi's Avatar

    Mastectomy

    Procedure or Surgery

    The surgeon who did my mastectomy was absolutely phenomenal but vague as to recovery time since it varies so much. I had a mastectomy, sentinel node biopsy (3 lymph nodes were removed) and reconstruction done at the time of surgery. I spent 4 days in the hospital and am still in the process of recovering 3 1/2 weeks later. I still experience a significant amount of pain (especially where the lymph nodes were removed) as well as a numbness in the back of my arm. The expander for the reconstruction is slightly uncomfortable (but the least of my discomfort). I cannot sleep in any position except for on my back and frequently wake up in pain. Also, during the surgery, they also found a 1 cm. area of invasive cancer that did not show up on either the mammogram (which did not show anything anyway - even right before the surgery) or the MRI (but I also have DCIS so this may have masked the tumor area). Therefore, I will need chemotherapy.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Suzi
    • Experience with Paget Disease of the Nipple
    over 5 years ago
    Suzi's Avatar

    Breast Reconstruction (Implant)

    Procedure or Surgery

    The expander for the implant is somewhat more uncomfortable than I expected.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • Suzi
    • Experience with Paget Disease of the Nipple
    over 5 years ago
    Suzi's Avatar

    Sentinel lymph node biopsy

    Procedure or Surgery

    From the area where I am experiencing the most pain, I would say that this was the worst part of the surgery (I have had absolutely no pain from the incision site). The area under my arm where the lymph nodes was removed is in constant pain which worsens later in the day and if I try to do too much during the day. Also, since they need to cut a nerve to do the sentinel node biopsy, I have a numbness in the back of my arm (and under my arm), which also seems to get worse later in the day.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  5. 5
    • Suzi
    • Experience with Paget Disease of the Nipple
    over 5 years ago
    Suzi's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    2nd Chemo. treatment 3 days ago..... have been sleeping a lot, nauseous, change in taste, neuropathy, light-headed, burning sensation etc.....

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  6. 6
    • Suzi
    • Experience with Paget Disease of the Nipple
    about 5 years ago
    Suzi's Avatar

    Side Effects

    This person has yet to add any details about this experience.

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