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.

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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.
http://www.cancer.net/portal/site/patient/menuitem.59bb91e1ba9ba37ef979e730dc37a01d?vgnextoid=649903e8448d9010VgnVCM100000f2730ad1RCRD&vgnextfmt=default&selectcancer=154

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,
Pat

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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:

http://www.mayoclinic.com/health/pagets-disease-of-the-breast/DS00771/DSECTION=symptoms

http://www.cancer.gov/cancertopics/factsheet/sites-types/paget-breast

http://www.breastcancer.org/symptoms/types/pagets/

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

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