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
- primekMemberYes...and hopefully a solution will be found for you this time @Liz4
- Liz4MemberPs my details are on the new referral about what went on so I am a bit stuck with it . However I have my daughter to go with so its all good .
- Liz4MemberSorry Zoffiel I cant work out how to comment to you individually . I had this discussion about reports and tests etc and mine have always been sent to relevant requesting doctors who then report to me . I have been sick with AI diseases (3) and have been with one GP all these years . Specialists have come and gone . I was told by one specialist rooms they were only required to keep files for seven years . Truly my hospital file needed its own trolley so I have been in the system . Going back to when this started I came on here as I didnt know what I was facing . I have let it go as I thought I was up against a brick wall as had been done in the past . Its been this year that it has had changes that I cant ignore . I keep my daughter informed and she has seen it from 3 years ago to now so even though the GP's never examine me she remembers its appearance from then to now Your messages arent coming through to me ladies so I am sorry I havent answered them until now .
- Liz4MemberHi Zoffiel . I havent had a diagnosis but was tested for Pagets . I have an auto immune disease which is rare and has a high tumour rate with it . So I have been turned inside out over 30 years to make sure I don't have one . Currently its the fact I wasnt able to get a second opinion on my breast when it all happened and the symptoms continued . I have had to make enquiries again as the appearance is worse . I dont want tests and specialists I would rather not be in this position but no one seems to have knowledge of what I was told was "suspected Pagets Disease of the Nipple ". I hope you are right and thanks for interest .
- Liz4MemberThanks for responses . I had left my name at the new breast surgeon to get a call back . They responded yesterday . The receptionist said "You have been here before and you live in ? Street " I said No I have never been there and I dont live at that place . I have lived here for 40yrs . I do know at the GP clinic who handled all this there is another patient with my name . She is also registered with my hairdresser so its always been a joke as I dont have a typical surname . The lady had me repeat my birthdate twice and had left me on hold while she checked . I am booked in to the new guy tomorrow so I will go on from there .
- brightspaceMemberHi liz4 have you had recent patholgy done on crust/discharge ......weird things like thrush can have an effect
Good luck B - ZoffielMemberLiz, it's not clear from the posts I have seen, have you had a cancer diagnosis, breast or any other? If you have, getting into one of the specialist clinics at Peter Mac or in one of the other big hospitals may be the go.
Getting in to see specialists for diagnostic stuff can take time. I understand you are frustrated but it might be worth getting you GP to give them a poke. - Liz4MemberHi 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 ?
- ZoffielMember
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
- iserbrownMemberExcellent 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