Questions on Paget's disease
This is my first time to ever post on a blog like this. Honestly, the fact that I am actually doing so scares the hell out of me.
I'm hoping to get some clarity on Paget's Disease. The information I have found is minimal, my doctors office doesn't seem to have much experience and the blog comments are old, but I am hopeful some of you with experience and knowledge can share some insight with me.
I will post my question, so you don't have to read the LONG post. If you choose to read it and offer suggestions that is appreciated.
My primary questions:
1) Does Paget's disease always have visible nipple issues? Can you have Paget's if you only have the itchy/tingling/prickly sensation?
2) Is a needle biopsy painful?
If you are bored...Here is my story...
Over a year and a half ago I started to have sever itching like sensations in my right breast. When I say itchy, I mean an almost painful sensation that is between an itch/tingle/prickly sensation. I went to the doctor and they ordered a mammogram and it showed nothing. I was pleased, but I have dense breasts so it wasn't surprising. Because I had neck surgery previously, they felt that I may have nerve damage that was making my breast react. So they gave me Nortriptyline and reduced my caffeine intake- NO change. My doctor then sent me to the breast center within my medical group (Kaiser). The breast surgeon said to me... You don't have breast cancer so there is nothing I can do for you and excused me.
I left feeling that was it... A year later, the itching/pain continued and I continued to thrust my hand down my shirt to itch my breast or to push my nipple as it seems to lessen the discomfort. I went back to my doctor and told him I was still concerned since the discomfort is still ongoing and seems to be more frequent and abnormal it has continued over a year... When I told him about the previous visit with the surgeon he was very disappointed. He ordered a new mammogram and an ultra sound, both showed nothing but he sent me back to the breast center to meet with a PA that handles breast issues.
I met with the PA and liked her very much. She had me go to a dermatologist for a mole on my breast, which he said was fine. She then had me take an antihistamine and vitamin E for 30 days. No changes. She then had me apply a cortisone cream and antibiotic every day and use lidocaine for the pain for another 30 days. No changes. My breast has become tender and I have little feeling in my right nipple other than the itching. This week she ordered an MRI and I was thrilled to finally be moving to the next step... Only to be called an hour later stating they rejected the request because there are no symptoms other than the itching. She was able to talk to a surgeon who agreed to do a nipple biopsy after I try Pepcid for 3 weeks to see if it is actually a stomach issue driving the itching in my breast- I have NO stomach issues....
I am at a loss and feel so defeated. I can't share with my family because there is nothing to tell them. I don't want to worry them if there is nothing to worry about. But I am becoming so frustrated because I know something is wrong- what ever it is, it isn't normal. I don't know what else to do other than to keep going along with the "program". But I am also concerned that if I do have Paget's I am a year and a half behind in treating it- if any of you have any suggestions, insight or feedback, I am happy to listen.
Best to all of you in your journey.