Forum Discussion
ymewhynotme
14 years agoMember
Paget's disease
I was diagnosed with Paget's disease of the nipple eight months after diagnosing myself through the internet. Misdiagnosed first time round.
I had surgery followed by 7 weeks of radiotherapy.
I was diagnosed in April 2009 and had radiotherapy from early August to early October 2009.
The reason for my blog is to make it easier for anyone that is looking for someone to talk to about Paget's disease as I realised it is not that easy to find my page. Paget's disease is a rare form of cancer therefore there is not much support available for women newly diagnosed with it.
Love Liz xx
77 Replies
- ymewhynotmeMemberHi family first I had a punch biopsy. I wasn't aware of any other types. Sorry I can't be more helpful than that.
- ymewhynotmeMemberHi family first I had a punch biopsy. I wasn't aware of any other types. Sorry I can't be more helpful than that.
- familyfirstMember
hi ymewhynotme,
thank you for your response. it has been helpful.I am wondering if there is any difference in what type of biopsy i should have? is this something the Doctor decides or can i request a particular type of biopsy? i have heard there is shave, wedge, surface and punch biopsy. so not sure what this entails. the Surgeon said he was going to shave a section if i remember correctly from our last visit? should i ask for a different type of biospy or are they all fairly the same in determining if there are cancer cells present or not?
alot of questions and i am aware that this forum may not have the medical answers i'm seeking. i'm just looking to hear experiences and thoughts of what to expect and can i take an active part in deciding what treatment during the initial investigation stages or is this considered over stepping my doctor/patient boundaries?
- Liz4MemberThanks for that . My GP is a family friend so when he isnt helpful I usually go to one of those clinics that are around I am ok . I think we have to listen to our body and our gut feeling , so you are doing all the right things. Its hard to stay focused when this is on your mind . Its a niggle that just wont let you rest . Glad your GP is kind and considerate .
- familyfirstMember
Liz4,
i am truly sorry that you had to endure your GP being rude and unsympathetic to your concerns.
I hope that you have found a GP that is considerate and compassionate and treats you with respect and dignity.
I have just come back from a visit to my GP as I haven't been sleeping well and just generally concerned. He was empathetic and listened to me and gave me some solid advice on keeping active and spending time doing this i love to keep my mind active. i Truly hope that you find a GP that fits your needs and has a much better bedside manner than the one you've previously seen
- familyfirstMember
hi Sue,
thanks very much for your kind words. i am hoping that everything is ok. I have tried to call the surgeon to see if there are any results back from the discharge and the mammogram but i keep getting the answering machine. i've left 2 messages and am hoping they will call me back today or tomorrow. I have an appointment on the 23rd of this month for the biopsy. the waiting and wondering is the hard part.
I feel like something isn't right but don't want to over react. The ithcing, heat in my breast and everynow and then a tingling sensation has been ongoing for so long. I just want to get some answers on why it won't clear up. it's frustrating not having anyone to discuss with and I am so thankful that I decided to get on to this website.
The support shown here has really helped in the last day. i am appreciative that you have shared your story with me and hpe that all is well with you now.
- ymewhynotmeMember
Hi familyfirst,
I am sorry to say that it does sound like Paget's to me. I had the same symptoms and it does not show up on a mammogram the only way to diagnose it is a biopsy. I went to a breast surgeon who ordered a mammogram and told me I was fine just use lucas paw paw ointment.
Eight months later my nipple started to go black. I went to another breast surgeon who said she was not convinced it was Paget's as I was only 48 at the time. It is usually older women that get it and it is very rare. She decided to do a biopsy anyway and sure enough it was Paget's.
I had surgery where they took the nipple and aerolea back to the chest wall and reconstruction at the same time. I had no underlying breast cancer so I had 7 weeks of radiotherapy around three months after surgery.
It is 5 years now and all is good.
Make sure you have the biopsy and take care. Please let me know how you go. It is not the worst type of cancer you can have if that is any help. I guess not as it is pretty scarey.
Bless you,
Liz x
- Liz4MemberHi, The breast surgeon removed my milk ducts and did a nipple biopsy . He wasnt prepared to take it further and a very rude GP told me there was absolutely no need. I had to give up for the time being. I got the bowel cancer scare just after all this . I feel as if I have spent most of the year fighting for a diagnosis I didnt want anyway.
- familyfirstMember
Liz4,
I really hope you go to see another doctor and get the answers you're after. Sorry to hear about the bowel cancer scare. I hope that is all ok now.
My GP did let me know that nipple discharge is common and mostly a normal thing unless accompanied by other symptoms. Some women from what i have read don't get discharge and just have a persistently itchy breast as their only symptom.
- familyfirstMember
yes flaky and my nipple is red and so itchy. the aereloa has become itchy over the last couple of mths also.
the discharge just looks like breast milk. cloudy in colour. the doctor said nipple discharge is normal in all ages - except when it's accompanied by other symptoms