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Posts: 10
Joined: Mar 2004

I'm looking for other women out there who have had Paget's Disease. I am 26 with two small children. I am also still nursing on the one side. I had a mastectomy on my right breast three weeks ago. Anyone in a similar situation? I'm looking for some support.

shmurciakova's picture
Posts: 910
Joined: Dec 2002

Is Pagets disease a form of breast cancer? Please tell us a little more about it. There are a few young moms on here, so hopefully someone can give you some advise. Take care, Susan

Posts: 10
Joined: Mar 2004

Yes, Paget's Disease is a rare form of breast cancer. It consists of only 1% of all breast cancers. It usually occurs in older women (50-60 range) Paget's is breast cancer of the nipple, usually also involving the milk ducts underneath. I just saw the oncologist and my case involved DCIS as well as Paget's. I am looking for other women who wanted to continue breastfeeding. Most of the doctors I've seen have not seen someone in this situation. I guess it is very rare to be diagnosed while breastfeeding. Most told me I needed to stop, but could not offer a good reason why. Are there other women who were told the same thing? Thanks!

isletcell's picture
Posts: 62
Joined: Mar 2004

I was also breastfeeding when i was diagnosed with a rare cancer. The docs also told me i should stop but no one really had a good reason. I tried to wean the baby but for some reason she would not take formula. So, I continued to breastfeed, worked with a lactation consultant managed my pain medications with alot of advice. And would pump before and after scans and I made it until she was 8.5 months. The day before my surgery. Then, she went cold turkey and moved in with grandma and grandpa for the next 10 days while i was in the hospital. She would only take cows milk so, we are watching her iron levels and so far so good.
I think it is so nice to breastfeed. You really form a bond with your baby that cant be replaced. This has been an emotional time for you and I know how nice it is to have that closness with your baby especially on days when all you want to do is break down and cry. You can never get this precious time back and I think this is a judgement call for only you to make.
If you really want the help of someone who knows all about theese isues I would search out a lactation consultant I know up in canada they are a part of the medical system. You can probably get more info by calling the hostpital maternity ward where you had the baby.
I hope this helps,

Posts: 1
Joined: Oct 2013

Pagets also occurs in other areas of the body.  I was diagnosed with extramammary pagets disease (peri-anal)  Make sure you have a Dr. and pathologist who know it, (not very many have ever seen it).  If you have surgery, you will want a pathologist who can identify the Pagets cells.  Best of luck to you.

Posts: 1
Joined: Sep 2016

Hi, hun. Just wondering how is everything?

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