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Paget's Disease of the Nipple

By October 26, 2010 - 2:28pm

Three weeks ago I was diagnosed with Paget's Disease of the Nipple. How can I find others who have or have had this? My mammogram is normal but a biopsy is positive.
I am so unsure of what to do and need advice. I don't want to rush into a mastectomy unless it is necessary. Someone please advise me on how to continue.

By Expert HERWriter Guide Blogger November 4, 2010 - 5:18pm

Hi watergirl - I'm glad you are at peace with your decision and moving forward. I'm also pleased you were able to find physicians with experience with other Paget's patients, and I hope you have also had the chance to connect with other women too. Let us know if we can help you as you prepare for January. I hope you're going to be able to do some things you truly enjoy over the holiday period this year and be with people you love. Take care and keep in touch.

November 4, 2010 - 5:18pm
By November 4, 2010 - 4:49am

Dear Pat, I've had a mammogram (all clear)and an MRI(suspicious small area) and consulted with 2 experienced breast surgeons with other Paget's patients and have decided to pick one and have a mastectomy in January. I am at peace with this decion.

November 4, 2010 - 4:49am
By Expert HERWriter Guide Blogger November 3, 2010 - 6:28pm

watergirl - We haven't heard from you in a while. How are you doing? Do you need assistance with anything? Hope you are moving forward and doing well. Pat

November 3, 2010 - 6:28pm
By Expert HERWriter Guide Blogger October 26, 2010 - 5:01pm

Hi again watergirl - I understand. I have a rare form of leukemia and didn't meet another human being with the same leukemia until 8 months after I was diagnosed. It's still a challenge to find good information and I've found the same is true for most people with rare cancers. I'm so glad that you found EmpowHER!

My initial thought is that you need to be working with a breast cancer specialist who also has experience in Paget's Disease. I don't want to alarm you, but many women with Paget's also have ductal breast cancer and you need solid, expert medical support. Do you know if your oncologist has treated other patients with this or is consulting with another oncologist who has experience with this? Most likely the specialists will be associated with the academic hospitals - teaching hospitals - such as Johns Hopkins and Fox Chase on the East Coast and Stanford on the West Coast. When you have a rare cancer your local doctor, as nice as he or she may be, may not be your best route to obtain the information and treatment you need.

This link provides information on the services at Johns Hopkins: http://www.hopkinsmedicine.org/avon_foundation_breast_center/breast_cancers_other_conditions/pagets_disease.html

Fox Chase does not provide specific information on Paget's online but they do treat some of the extremely rare forms of breast cancer and most likely they also work with Paget's patients too: http://www.fccc.edu/cancer/types/breast/index.html

To help in finding resources to assist you in educating yourself and possibly needing other forms of support (financial, etc.) here's a link to a broad range of resources from Cancer.net which is provided by the American Society of Clinical Oncology, including some groups that have both face to face and online discussion groups.

Right now, in the early stages, you're going to be bombarded with a lot of information while you are also trying to absorb a lot of information. It can be a overwhelming, so please make your own self-care a priority as you take this on and be sure to give yourself some breaks from the medical side of your life. It truly does help!
Take care,

October 26, 2010 - 5:01pm
By October 26, 2010 - 3:43pm

Dear Pat, Thanks for your prompt reply. The articles you suggested are very useful to me. I live in Alexandria, VA (close to Wash.DC). It is so helpful to talk to someone else.

October 26, 2010 - 3:43pm
By Expert HERWriter Guide Blogger October 26, 2010 - 2:59pm

Watergirl - Thanks for joining our group and welcome to EmpowHER. Paget's Disease is rare and only affects about four per cent of breast cancer patients. Let me know what city and state you live in, or country if you're not in the U.S., and I will research to see if there are specific support organizations near you. In the meantime here are some articles that provide general background information on this condition:




You're wise to consider all your options. Take good care,

October 26, 2010 - 2:59pm

Group Leader

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