My visit to the London Marsden

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Well ladies, I’m back from my visit with Fiona MacNeill at the London Marsden – and she was lovely.

I told her all my history and why I was worried again and after a long chat she examined me. She said she couldn’t feel anything wrong, but we got onto the subject of having a risk reducing mastectomy on my right side. I feel like this is a timebomb waiting to go off, as I had lobular. My letters from the hospital to my GP said I had pleomorphic LCIS, which I didn’t think anything of at the time, but she said that this often means extremely likely to be bilateral. She said that LCIS is virtually undetectable with mammograms and more importantly MRIs and could understand my anxiety about this – ie if it’s in the other side, do I have to wait until it becomes invasive, and if it does will I find it early this time and if not, it will have spread to my lymph nodes.

As she said, I have a responsibility for myself, but also for my three boys and also my three step children who saw their mother go through chemo etc to no avail – and also Ian too, of course.

I googled pleomorphic LCIS – it’s not good – very aggressive. I know what to do – take it off and have a recon – and then we can all (well nearly) rest easy. As well we all know, it hangs over you and you constantly think is it back? It’s the best thing to do for all of us, I don’t want it to come back and have to go through chemo etc and upset Ian’s children or mine, or Ian too.

She said with my age (38 at diagnosis) invasive lobular and this pleomorphic LCIS too, that it would be the best thing to do and she would support me in this. What is an operation, though long and difficult, compared to future treatment and distress – to me the answer is easy – it’s gotta go!

Going back on 12th September to see her again once she’s got all my mammogram and MRI films from Norwich, but I now know what I want to do – I’ve talked to Ian and he says he’ll support me in this.

I feel like a huge weight has been taken from my shoulders – I’m beaming again.

Thank you for all your support,

Love Sally xx

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Hi Sally,

Sounds like it was a great visit, you were able to have a good discussion and get all the information you needed to make a decision, you sound in control, and you sound like your smiling , so I am sure you will make the decision thats right for you all,

Take care and good luck with next stage
Dawn X

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Glad to hear you feel so positive after your consultation.Good luck for the future,
Hugs
Dot
xxx

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Hi SallyLou,

I can’t speak highly enough of Fiona MacNeill at the Royal Marsden. I had LCIS in 2006 while under the care of another surgeon at the Royal Marsden and had a WLE. For some reason I got trasferred to Miss MacNeill’s care and have been seeing her since. In February of this year my mammogram showed some changes and biopsy wasn’t definitive so Miss MacNeill recommended another WLE to get a definite diagnosis, although she did warn me that if the WLE showed anything she would be recomending Mastectomy.

WLE showed DCIS at the margins so when she gace me that result and talked about Mastectomy she offered me a 2nd opinion at Bart’s which I jumped at. Mr Caprenter there agreed with Miss MacNeill but said that am MRI would be sensible in case the DCIS was masking something invasive and to see if there were anything going on in the other breast.

Unfortunatley the MRI showed soething which biopsy confirmed as Atypical Lobular Hyperplasia (ALH) and Miss MacNeill told me honestly that although that wasn’t cancerous, it wasn’t normal either and that nobody would knew what would happen to it if it were left. She told me it could turn invasive next year, two years time 10 years time or never… But it would be up to me what I wanted to do and she would support me in anything I chose.

I did choose Bilateral Mastectomy with immediate reconstruction with tissue expanders and had surgery on July 23rd. It hasn’t been easy by any stretch of the imagination and the recovery has been much harder than I had expected.

Miss MacNeill, however, has been kindness itself and when I last saw her she apologised that the only thing she could do for me that day was give me a pep talk. She will also see me at any time if I’m worried, all I have to do is phone up and I get fitted into clinic.

Good luck with whatever you choose and if you want honest answers to what the srugery will be like feel free to PM me,

Trudie.

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Hi Sally

That’s exactly why I had the second one off, didn’t want to be worrying and panicking in two or three years time, and like you say if by that time it had spread, who knows!!! I was told it was a 30% chance of it coming back which I think is quite a big percentage.

I’m glad you’re feeling a bit perkier about everything.

Julie xxxx

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Hi

I saw Miss Fiona Macneill too, and i thought she was wonderful. I think she really does take your individual case into account, and if she is recommending a particular treatment, i would go for it. I only had to have a wle, and all my lymph nodes out, and its not lobular, but invasive ductal carnicoma, and she said if it comes back. she would be recommending a mastectomy too.

A