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This article was medically reviewed by Sarah Gehrke, RN, MS. Sarah Gehrke is a Registered Nurse and Licensed Massage Therapist in Texas. Sarah has over 10 years of experience teaching and practicing phlebotomy and intravenous (IV) therapy using physical, psychological, and emotional support. She received her Massage Therapist License from the Amarillo Massage Therapy Institute in 2008 and a M.S. in Nursing from the University of Phoenix in 2013.
There are 10 references cited in this article, which can be found at the bottom of the page.
This article has been viewed 14,043 times.
Finding out you have breast and extramammary Paget’s disease can be a confusing and stressful diagnosis. These conditions are rare cancers of the reproductive organs that can be scary to deal with since you may not know much about them. These diseases are generally treated with surgery and follow up care.
Steps
Method 1
Method 1 of 5:
Seeking Medical Treatment for Paget's Disease of the Breast
Undergo breast-conserving surgery if you don't have a lump. If you have Paget’s disease but do not have a lump, you may be able to undergo a surgery that saves the breast. Your nipple and areola will be removed, but the breast will remain intact.[1]- You may also need to get surrounding tissue removed near the nipple area.
Get a mastectomy if you have a tumor. If you have Paget’s disease of the breast and a tumor, you will need to have a mastectomy. If the cancer has spread to the lymph nodes, you may need to have those removed as well.[2]- The stage of the cancer and size of the breast tumor will determine what related treatment, such as chemotherapy or additional surgery, will be needed.
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Go through adjuvant therapy to follow up after your surgery. Depending on the severity of your condition and what operation you have had done, you may need follow up adjuvant therapy. If you have breast-conserving surgery, you more than likely will be given whole breast radiation.[3]- For a mastectomy, your doctor may suggest radiation therapy, chemotherapy, or hormonal therapy. This depends on the stage of the cancer, the size and type of tumor, and if the lymph nodes are also affected.
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Method 2
Method 2 of 5:
Treating Extramammary Paget’s Disease
Undergo surgery to remove the affected area. The most common treatment for Paget’s disease of the vulva or penis is surgery. During surgery, the doctor will perform a wide excision of the affected area. This wide area will ensure that any cells in healthy-looking skin are removed.
Get a skin graft if too much tissue was removed. In some instances, you may have to get a skin graft after surgical removal of the cancerous tissue. This is used when so much skin was removed that the wound cannot be closed on its own.[4]- The graft will replace the skin removed to help close the wound.
Follow up with your doctor regularly. Because of the nature of extramammary Paget’s disease, the condition may recur at any time or you may get a related Paget’s disease. You may also be at risk for additional underlying cancerous cells.[5]- Your doctor may suggest getting colonoscopies and mammograms since gut and breast tissue can be affected due to Paget’s disease.
- To make sure you carefully monitor your health, work with your doctor to set up frequent appointments and follow up gynecological exams.
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Method 3
Method 3 of 5:
Finding Support
Talk to friends or family about what you are going through. Having someone you can talk to and rely on during this time is very important. Choose a few people you think will be supportive and listen to you. The person doesn’t need to give you advice. They just need to be able to listen to you when you need to talk.[6]- You can try family members or friends you feel comfortable talking with. If you don’t feel comfortable talking to them, you can try religious leaders or counselors.
Find a cancer support group. Breast or extramammary Paget’s disease is a rare cancer, and this can cause you stress and mental pain. You may benefit from going to a cancer support group. Your oncologist, cancer organizations, and local hospital can help you find a support group in your community.[7]- You can go to a general cancer support group, or try for a more specific one, like a breast cancer group or a male cancer group.
Stay intimately and emotionally connected with your partner. Paget’s disease affects reproductive organs. Women may have breasts removed, and both men and women may have their genitals affected by this disease. This may cause insecurities or problems in your relationship.[8]- Work on keeping your relationship strong by talking to your partner about how you feel and what is bothering you.
- If you are unable to engage in sexual activity for a period of time during treatment, find other ways to connect and be intimate.
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Method 4
Method 4 of 5:
Diagnosing Paget’s Disease of the Breast
Monitor for irritation of the areola. If you have Paget’s disease of the breast, you may first think you have dermatitis or eczema. You may experience itching or tingling of the nipple or areola. Along with this, you may notice redness in that area.[9]
Notice any change to the skin on or around the nipple. If you have Paget’s Paget’s disease of the breast, you may realize that your nipple is a flattened or inverted shape instead of round. You may also experience changes to your normal skin around your nipple. The nipple area may have flaky skin, or that the skin is crusty in places.[10]- The skin may become thickened around or on the nipple.
Check for discharge from the nipple. With this disease, you may start producing a discharge from your nipple. This discharge may be a yellow color, or it may be slightly bloody and tinted red or brown.[11]
Have a breast exam. If you suspect there is a problem with your breast, you should go to the doctor. First, they will do an exam, including a physical exam of the breast. If they find unusual symptoms or lumps, they will then do a mammogram.[12]- During the mammogram, which is where they take an x-ray of your breast, they will look for evidence that indicate breast cancer and Paget’s disease.
- In some cases, you will need an MRI if the mammogram doesn’t reveal anything and the doctor still suspects Paget’s disease.
Get a biopsy. If your doctor finds evidence of breast cancer or Paget’s disease, they will probably take a biopsy of your breast tissue. First, they will take a biopsy of the tissue around your nipple. They may also take samples of the nipple discharge if you are experiencing that. If you have a lump, they will also take a biopsy of that.[13]- The doctor may take samples of the lymph nodes to see if the cancer has spread to that area.
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Method 5
Method 5 of 5:
Diagnosing Extramammary Paget’s Disease
Recognize the symptoms. This condition is related to Paget's disease of the breast. It can affect both men and women, and affects the genitals and anus. It can be found on the penis and scrotum, but it is most commonly found on the vulva of women who are postmenopausal. Symptoms include:[14]- Red, flaky skin resembling a rash on the vulva, penis, scrotum, or anal area. The thighs may also be affected.
- Lesions on this area that are thick and that itch or burn. They may bleed and be painful when scratched.
Go to the doctor for an exam. If you have any of these symptoms, you should go to the doctor for a physical examination. They will check your symptoms and take your medical history to assess your condition. If they believe you have extramammary Paget’s disease, they will do additional tests.[15]
Undergo tests. Depending on your specific type of extramammary Paget’s disease, you may have a variety of tests. Imaging tests, such as an ultrasound, CT scan, or MRI may be ordered to check the groin area. The doctor may also suggest a colonoscopy.[16]- The doctor will probably also take a biopsy of the area. They may take a biopsy of the vulva, penis, scrotum, anus, or surrounding areas. The biopsy will be examined to come to a definitive diagnosis.
- If you are a woman, they may do a vaginal smear.
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References
- ↑ http://www.hopkinsmedicine.org/breast_center/breast_cancers_other_conditions/pagets_disease.html
- ↑ https://www.cancer.gov/types/breast/paget-breast-fact-sheet
- ↑ https://www.breastcancer.org/types/paget-disease
- ↑ https://uamshealth.com/condition/pagets-disease-of-the-vulva/
- ↑ https://www.cancer.gov/types/breast/paget-breast-fact-sheet
- ↑ http://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/manage/ptc-20198038
- ↑ http://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/manage/ptc-20198038
- ↑ http://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/manage/ptc-20198038
- ↑ https://www.cancer.gov/types/breast/paget-breast-fact-sheet
- ↑ https://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/symptoms-causes/syc-20351079
- ↑ https://www.cancer.gov/types/breast/paget-breast-fact-sheet
- ↑ http://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/diagnosis-treatment/diagnosis/dxc-20198027
- ↑ http://www.mayoclinic.org/diseases-conditions/pagets-disease-of-the-breast/diagnosis-treatment/diagnosis/dxc-20198027
- ↑ https://stanfordhealthcare.org/medical-conditions/cancer/extramammary-pagets-disease/symptoms.html
- ↑ https://rarediseases.info.nih.gov/diseases/4192/extramammary-paget-disease
- ↑ https://stanfordhealthcare.org/medical-conditions/cancer/extramammary-pagets-disease/diagnosis.html
About this article
Sarah Gehrke, RN, MS
Registered Nurse
This article was medically reviewed by Sarah Gehrke, RN, MS. Sarah Gehrke is a Registered Nurse and Licensed Massage Therapist in Texas. Sarah has over 10 years of experience teaching and practicing phlebotomy and intravenous (IV) therapy using physical, psychological, and emotional support. She received her Massage Therapist License from the Amarillo Massage Therapy Institute in 2008 and a M.S. in Nursing from the University of Phoenix in 2013. This article has been viewed 14,043 times.
Co-authors: 7
Updated: September 11, 2022
Views: 14,043
Thanks to all authors for creating a page that has been read 14,043 times.
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