Forum Discussion
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
- Hi SusanF. When I received an email from SusanF I thought Oops I have somehow sent myself an email as I often go by the name Susan. I found it rather amusing and as you say almost identical in diagnosis. SueF
- Hi SusanF. When I received an email from SusanF I thought Oops I have somehow sent myself an email as I often go by the name Susan. I found it rather amusing and as you say almost identical in diagnosis. SueF
- I hope you have managed to get a referral for your concerns re your nipple and I hope you will pop back and let us know how you go. Pagets of the nipple only accounts for 1% of world cancers (I'm advised) and not too many doctors recognise it. Surgeons advise it begins from within from a mass, it does not always, mine did not. Even Breast Screen Australia did not pick it up so you have to be very insistent with testing, I had every test..physical exam x 6, mammograms, ultra sound, fungal creams, cortisone creams etc, on and on until punch hole biopsy! Bam Padgets Disease of the nipple with extensive high grade DCIC and NCIS. Keep going until you are assured kiddo, it would be highly unusual given the statistics. Sue F, not only the same name but almost identical in everyday...funny, xx
- Hi Kiri-ana Sorry to hear of your trouble with itchy nipple but I know how awful it is. I had red and very itchy nipple for many months and my GP tried a couple of different anti fungal creams without success. I had a Mammogram and Ultrasound neither of which showed anything untoward . Thankfully he was not happy to leave it there and sent me to a Dermatologist who straight away told me it could be Pagets. She then did a biopsy which confirmed it. My GP had never treated anyone with Pagets as it is such a rare form of breast cancer. i would suggest to your GP that maybe a referral to a Dermatologist or Breast Surgeon. Best Wishes. Sue
Hi Kiri-ana, it's Lisa from the Policy Team. I'm sorry to hear that you've been experiencing pain and soreness of your nipple and breast for the past few months.
We would suggest that you go to a breast clinic, or ask your GP for a referal to a breast surgeon to be checked out, as it is likely they will be able to be most helpful to you.
Warm regards,
LisaHi Fidelina 44,
I am sorry you have had to come to this site. Glad you did though.
Yes I had a punch biopsy and the needle for the anaesthetic hurt quite a bit. The punch biopsy I don't think hurt much. I can't really remember but I do remember when the anaesthetic was wearing off it hurt a lot.
I suggest you take some pain killers before and after. I wasn't told to do that. I didn't have to change any dressings just took them off the next day. I am sure your breast surgeon will advise you. No I wouldn't go out and buy anything special.
I really hope your results are negative. God Bless you and please keep us informed.
Love and Hugs Liz W
Hi
I will be having a punch biopsy in 3 weeks
A few questions re pain and after care
Is it really painful? How often do I need to change dressings?
How often? Do I need to get antiseptic or any type of dressing?
Many thanks
- Hi family first I had a punch biopsy. I wasn't aware of any other types. Sorry I can't be more helpful than that.
- Hi family first I had a punch biopsy. I wasn't aware of any other types. Sorry I can't be more helpful than that.
- Hi family first I had a punch biopsy. I wasn't aware of any other types. Sorry I can't be more helpful than that.
