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Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

6 REPLIES 6
Guest user
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Re: Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

just to update, I saw the second opinion surgeon on fri, was incredibly nervous and waited over 2 hours (as it turned out this was due to them not having the mammogram results), it was sooo worth while for me, the surgeon listened to me, examined me and then talked through everything from a patient/lifestyle perspective rather than a surgical perspective and his really resonated with me, it was a huge relief just to hear someone else professional talking things through and I learnt more about both my diagnosis and the impact/risks of the different options.
I would have loved to have been at this other unit, not only because i felt i connected more to this surgeon, but also the environment is a specialist centre, much more welcoming and you know everyone there is on a similar journey, however I had no intention of asking to swap, I thanked both the surgeon and nurse and hugged them, I went out, cried with relief and am now set for the next stage, feeling much more prepared:)
nonsuch
Member

Re: Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

I saw another really helpful health prof today who said there is an excellent cancer centre-the Christies- In manchester and that might be a good place to start.

Good luck, keep us posted about how you get on?

Guest user
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Re: Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

Hi nonsuch, thanks for the advice I will follow that info up. I hope you are recovering well from your MX/recon, take care and thanks for your time
Guest user
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Re: Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

Thanks so much for the reply Jo, I will give the helpline a call in the morning, the booklet links were useful too, thankyou:)
nonsuch
Member

Re: Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

I can't help in terms of surgeons though I know there are four really major treatment centres in the uk of which i believe two are ...Glasgow and Notts ..I cant recall the other two. But outside these, I was advised to look for teaching hospitals. And there was an article in a newspaper ( like the times or guardian) this time last year which listed the "best" breast cancer surgeons- maybe googling this would help?

Just thought I'd mention that for me, DCIS was diagnosed initially so I was advised I needed a MX and could have a DIEP reconstruction. After the op, the lab analysis showed I also had undiagnosed pagets on the left side. Luckily I didn't need rads or chemo as my lymph nodes were clear..I hope all works out well for you.

Jo_BCC
Member

Re: Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

Hi Jesmech,

Could I suggest that you give the helpline here a ring and have a chat with the staff who are here to support you through this. Lines are open again in the morning at 9am (weekdays 9-5 and Sat 10-2). Calls are free, 0808 800 6000.

Also I have put for you below links to BCC's publications on DCIS and Pagets disease which you may find helpful.

DCIS: http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-...

Pagets: http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/pagets-disease-breast-bcc38

Take care,

Jo, Facilitator

Guest user
Not applicable

Diagnosis of Paget's of the nipple, poss DCIS, mastectomy provisionally booked

I had a confirmed diagnosis of Pagets on my left breast on Thu Oct 4th, following a mammogram and punch biopsy of the nipple 2weeks ago. I have been advised the only treatment is a mastectomy, and am lucky that i am suitable for an immediate reconstruction, for which I will see the reconstruction surgeon on Monday. Every one has been so kind (apart from the grumpy receptionist two weeks ago when I dared to stand in the wrong place when I couldn't find anyone to book me in for my appointment).
I have asked to be referred for a 2nd opinion, not to seek another answer or to question the results, but just to talk to more than one person, this might seem crazy and I felt bad about asking but to me I never make any major decision without researching and to me this is no different. The BCN has been fab and reassured me that this is absolutely fine and understandable, Suggesting I speak with my GP. The GP was great and rang me back the same day to discuss my request, she referred me to the admin person who would arrange it for me and she rang back next day and as i had mentioned a specific surgeon withing 25miles of where I live and she had phoned his secretary. However he is no longer in the area (I am NW, he is now London), the problem now is that she was clueless as to where else I could be referred to, suggesting the Internet is the only source of information. I came off the phone saying I would contact her by Monday. Now I feel that I should not be put in the position of having to find somewhere myself. Surely they should have access to more accurate information than i would via google. I do know I am lucky that this is treatable but to be honest today I feel like I want to spend time with my two young boys and hubby, not trawling the Internet looking for alternative hospitals (I have already spent hours but am none the wiser) i would really appreciate advice from anyone who can suggest NW hospitals. The nhs choices site show around 25 but the data doesn't help me decide as its not all verifled or even looked at by the relevant hospitals.