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 Ladies , I have called the new surgeon four times and have left my number for a call back . So far no response . Is there anywhere I can go in the meantime in case he doesnt get back to me ? I am in Melbourne Victoria. I found a site where some women had bravely put pictures of their breasts and unfortunately they were all the same as mine . I got talking to one lady and found out she also had trouble breast feeding from that breast . That was in my twenties and I am now 63 . Its all wrong and I just want an opinion one way or another . Can anyone help please ?
Liz, I have copies of every single blood test, report etc. You have an absolute right to those. Please make it just a matter of course. Get yourself a segmented folder and put them in it. I'm coordinating care across 4 services and, unfortunately, even though I know how to add all the relevant medicos to and request, things go missing. It has been invaluable for me to be able to produce them if required.
Kath is right about drawing a line under what happened in the past since your chances of being able to do anything about it are somewhere between zero and not much.
I'm more concerned about you feeling like you have some function in this process, to have a bit of control. Mind you, I'm not in your situation and have been blessed, or cursed, with a somewhat dominant personality.
Wait until you see the new surgeon then request copies of the old reports if you think they will be helpful. Otherwise write it off as an learning experience. Marg
- Excellent advice from Kath! Just treat it like you are starting again but inwardly you are more aware and know what to ask as you go through the process. Take care and willing you along for a better outcome
- Thanks Kath , I was thinking about tracking down the pathology result on the milk ducts that has gone missing . But I suppose it gives the surgeon a heads up that I am enquiring . Luv
- @Liz4 I certainly would not take original letter you want an objective opinion. Now either put the other one away or rip it up. Dont waste another moment thinking about that arrogant Dr.
Kath x - Thanks Zoffiel , I was wondering if I should take the original letter . So i will take your advice now I would like to have all this stuff removed from my details but I hear thats hard to do . He states I had Fibromyalgia and thats not true . I said i had Dermatomyositis which has a high tumour rate . Do you think I should ask the original surgeon for a copy of the results of the duct incision as that has somehow gone astray . Thanks again
- Liz, I wouldn't mention the letter to the new surgeon. That's not their business at the moment and I think it would just muddy the water. If the advice you get is contrary to what is in the letter, then it becomes important.
- Thanks for responding Marg , I got confused and went on another forum just now . I am awake at 5.am trying to figure out what the hell happened . I keep thinking of the words of this lovely surgeon and how in no way did I do what he accuse me of , I just followed his advice . I have read and re-read the letter the GP gave me from the surgeon and its disgraceful . I dont know what to do . I probably cant take more testing or surgery . I suppose I want someone to say i either have it or I dont but I cant go through the surgery to find out as I am so much physicall worse . This is negligence and lies and I stood a better chance three years ago than I do now . Then to have a letter disappear from my file ? I have had 30 yrs of bad health and I have had a lot said to my face and can stand up for myself but to have it in a letter with lies that goes onto a file is disgusting . Thanks I will make the new appointment with the correct details of my health in the new referral and see what comes of it .
I guess at this point it would be wise to sit down and have a think about what you do want them to do. Apart from, obviously, stop jerking you around and telling lies. Not an easy question to answer. If you want that nipple gone, say so. If you want them to leave you alone, make that happen.
All this stuff on top of your already poor health must be just exhausting. A pus producing nipple is a nasty thing. I've got one that goes all disgusting every couple of years--it is a most unpleasant experience. My situation is different; I had nipple sparing mastectomies 10 years ago and, to be honest, given the amount of angst and trouble those teats have given me, I would have been better off without them. That is likely to happen very shortly.
I'd suggest seeing the new surgeon and finding out what they have to say. Then go with your gut. Good luck. Marg xx
- Hello , its been a while since I went through the Pagets investigations . I had said on here that the surgeon and the referring GP were both reluctant to send me for second opinions . So here I am 3 years later and they had removed the milk ducts and found them benign but the nipple has continued to be crusty and discouloured . As I kept getting refused a referral and having other medical stuff going on I didnt concentrate on it much . I have a muscular disease that takes a lot of my energy but also has a high Tumour rate with it . Its called Dermatomyositis a rare auto immune disease . As the nipple got worse lately I went back to the original clinic that referred me yesterday the 1st May 2017. I saw a different GP and he asked if I wanted more Radical Surgery and I said NO i just want another opinion as its never cleared up . I said I liked the surgeon but he gave me a referral to someone else and handed me a copy of a letter that was on my file . This never happens but I thought it was to go with the referral so I only read it in the car as he hadnt said anything . Its a copy of the letter from the surgeon to the first GP stating in five paragraphs that even though he advised me of the benign nature I was still "Motivated" to have further surgery. He then said I was very "Motivated" to undergo a total duct excision . To this end he has consented as it would be both diagnostic and therapeutic. He claims it had no signs of crusting when he examined me after the biopsy . This is total lies , its never cleared up and I certainly didnt feel Motivated to have the surgery or anything else . The gp I saw yesterday didnt say much but did mention the letter after the excision seems to be missing from my file . I think he has given me the letter to let me see the way I was portrayed in it . First time a GP has ever given me a copy of a letter . I am dumbfounded and in the 3 years since I have gone down considerably in my health so I assume any further surgery now would not be attempted . Its never cleared up at any time and has only gotten worse but I thought I had done everything I could to get answers . I will make an appointment with the new surgeon but I doubt I will be going through anymore testing . I am so discouraged and you were all in my mind over the last 3 years and the stories of how you all fought to get answers . Thanks again any comments will be appreciated as I am lost .
