Paget's disease

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 .  

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 .

Hi Kiri-ana, I agree with Lisa please seek proper medical advice, A GP referral to a dermatologist and a breast surgeon would be highly beneficial for you. Hopefully it's a bacterial or viral problem that can be easily treated however it's best to keep seeking answers to protect your health. You know your body and obviously it's on your mind. Please take heart in knowing many women have lots of different diagnoses and each outcome is completely different but it's proof with websites like this that if needed there is a huge amount of support and positivity available. I had to fight to get answers as I was trying to nurse our newborn (6wks) baby girl and lots of highly regarded professionals kept putting my symptoms down to incorrect feeding, being hormonal, stress with a young family (my other daughters were 2 & 5). I did antibiotics, cortisone creams etc etc I was eventually diagnosed with Paget's disease of the nipple (via punch biopsy from a dermatologist ). On the upside our youngest little angel is now 15 months old, I've had a bilateral mastectomy with tissue expanders and about to have reconstruction. I'm doing great, my husband is extremely supportive and I have 3 beautiful happy girls. What may seem at first worse case scenerio can also become intime all OK. Good luck, stay positive, seek answers, keep questioning, follow your gut. Warm regards, Kylie

Hi Kiri-ana, I agree with Lisa please seek proper medical advice, A GP referral to a dermatologist and a breast surgeon would be highly beneficial for you. Hopefully it's a bacterial or viral problem that can be easily treated however it's best to keep seeking answers to protect your health. You know your body and obviously it's on your mind. Please take heart in knowing many women have lots of different diagnoses and each outcome is completely different but it's proof with websites like this that if needed there is a huge amount of support and positivity available. I had to fight to get answers as I was trying to nurse our newborn (6wks) baby girl and lots of highly regarded professionals kept putting my symptoms down to incorrect feeding, being hormonal, stress with a young family (my other daughters were 2 & 5). I did antibiotics, cortisone creams etc etc I was eventually diagnosed with Paget's disease of the nipple (via punch biopsy from a dermatologist ). On the upside our youngest little angel is now 15 months old, I've had a bilateral mastectomy with tissue expanders and about to have reconstruction. I'm doing great, my husband is extremely supportive and I have 3 beautiful happy girls. What may seem at first worse case scenerio can also become intime all OK. Good luck, stay positive, seek answers, keep questioning, follow your gut. Warm regards, Kylie

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