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 Liz I can only imagine how stressed you must be feeling. I suppose all you can do is to keep having check ups. Still, it certainly sounds like the doctor is not understanding that stress you are going through. Do you have access to a local breast Nurse? Or someone in a breast cancer support group? Maybe they can give you alternate doctors that may listen to you Thoughts are with you, take care and don't give up Regards Jill
- Hi again , Saw GP yesterday who was the one that arranged the urgent surgeon appointment . I wanted to ask him if I should see the surgeon he first suggested . Also wanted him to see that both nipples are affected , one still worse than the other after surgery on ducts . He read the surgeons notes , didn't even examine me . Said an MRI or second opinion would be "overkill". He suggested I come back in a month to see him . I was trying to go by all the right procedures to find answers . I think its easy for them to blame my auto -immune diseases when I have already had that ruled out . Thanks again for help. Liz4
- Hi again , Saw GP yesterday who was the one that arranged the urgent surgeon appointment . I wanted to ask him if I should see the surgeon he first suggested . Also wanted him to see that both nipples are affected , one still worse than the other after surgery on ducts . He read the surgeons notes , didn't even examine me . Said an MRI or second opinion would be "overkill". He suggested I come back in a month to see him . I was trying to go by all the right procedures to find answers . I think its easy for them to blame my auto -immune diseases when I have already had that ruled out . Thanks again for help. Liz4
- Thanks Kylie and Liz . I went to the US site and it was there I found that an MRI can be helpful . I don't know why the surgeon said it was expensive as I was the one paying . I would rather do that and get another opinion , its not healing and more crusty . I have had a nasty chest infection so just got around to making a new appointment with breast surgeon . When I saw a new GP about the chest infection I told her about breast problems and she said definately get another opinion . He works at a breast clinic so i am seeing him on 23rd may and will tell him what I want this time . I am hoping he will refer me on so I will let you know . Thanks if it hadn't been for this blog I would not have known anything . Take care Liz4
- Hi Liz, It doesn't sound normal at all does it. I have no medical training and limited knowledge unfortunately all I can suggest is to keep asking questions seek a different opinion by another dr or surgeon and might be worth paying for an MRI. It's not cheap my last one was over $600 and Medicare / private health doesn't cover anything. I think you need peace of mind and a solution to your problem. Another really good blog I have found really helpful is breastcancer.org think it's an American website. I've recently changed surgeons and I'm much happier with decisions moving forward. Sorry hope this helps a little bit. Kylie
I had intended to come and thank you all for this blog its been very helpful . I haven't been well since the surgery although relieved at surgeons results . My problem is the yellow crusting is back on the same breast , probably worse than before. The surgeon said he would send me back to the dermatologist if it happened again . I wasn't expecting this . I am confused , if he said it was coming from the milk ducts and he has removed them where else would it be coming from ? Any suggestions on going back to the initial dermatologist or should I ask to see another breast surgeon ? Thanks liz4
- Hi Liz, That's great no cancer. Best of luck in the future. Take care of yourself, Kylie
- I have brain fog lol I was sure I had updated my results on here . Correction I was turning 60 not 69 , so saw surgeon on Friday after having the ducts removed the previous week and he said he isn't sure what my ducts had in them but it wasn't cancer. He said if it recurs in the other breast he will likely send me back to the dermatologist . Thanks ladies for all your input . Best wishes from Liz 4
- Hi Liz, That's great that your biopsies came back clear that must be a relief. I think whatever testing is necessary to give you peace of mind is definitely worth it. Day surgery isn't too bad and dissolvable stitches ok at least once you receive those results you can move forward. It's so tiring all the testing, appointments etc. Always go with your gut feeling. Hope you have a restful couple of days. Take care, Kylie
- Hi again , saw the breast surgeon who said my biopsies of nipple were clear but when he examined me he found more discharge from same breast . It is a yellow creamy consistency . I asked if there was any more testing to make me feel confident that this discharge etc wasnt leading to a problem later , so he said an MRI was a costly and unnecessary test but he was able to remove the milk ducts for testing . I am about to turn 69 so he thought I was at the age that I should make sure . So booked in for Thursday to have it done. Day procedure with 2 stitches that will dissolve . Not looking forward to it but realise now so many go through much worse. Thanks so much for your help . Liz4
