RESIDUAL/RECURRENT DISEASE AFTER MX -

Hi Anna of BCC,

 

Thanks for your comments re. why you have locked my earlier post, regarding residual (recurrent) disease after a MX. And for the forum policy guidelines.

 

I will repost my question but without the ‘incentive’, now.  (I know, that so many of us, who use the forum, are busy mums and/or working-women etc. and do have to ‘read and run’ on occasion!  So it was a way around that behaviour.)

 

Across your site, other BC sites and contacts of contacts; I am getting great feedback to my propsition: that if you have a mastectomy, particularly a skin-sparing- mastectomy, across most hospitals in the UK then you are not currently likely to be offered, robust, post-op, testing of ALL your tissue margins. Certainly, not as throrough a review, that you would receive, if you had, had a WLE (lumpectomy).  This will leave women , thankfully not many, but a reasonable number at a greater risk of having residual or microscopic disease missed or of developing at a later date; recurrence and even possible further progression of their disease, as a worst case scenario. But I am very open to challenge on my proposition? I could be missing something very obvious…I have been told that Margin Testing after MX isn’t needed, as all the live breast tissue is removed - but to counter that a lightening-fast web review, between, other Sunday chores here, tells me that everyone knows and states openly, that scenario is not,  even with the best surgeon, on your team, quite possible - especially, at your skin side.

 

I would love to think what really amounts to a  “lack of thorough checking” that we are clear of disease- from some (most) of the hospital’s involved in all our treatments; rather than from by the women themselves who usually pick up residual/remaining disease could be reviewed and hopefully changed to improve women who have been through a MX  health outcomes going forwards.  

 

After all the same women who are told by the hospitals and all the ‘thought-leaders’ in the Breast Cancer area to “check, check, check” probably expect nothing less is happening within the teams, we all entrust are care and treatment to. I certainly did.

Hi Norton

Genetsting a discussion is very encouraged on the forum but ad hoc polls and surveys are against our terms and conditions. Please do contact us using the firm I attached to my previous post if this is what you are intending. There does seem to be many many areas of Breast Cancer that still have huge question marks and I encourage you to call our free helpline 0808 800 6000 Monday to Friday 9-5 and Saturday’s 10-2. Our nurse specialists may be able to help with your question.

I hope you are enjoying some spring sunshine amongst all your Sunday chores.

Best wishes
Anna

No, no sunshine! But thanks for your good wishes… I did have a lovely afternoon, with my 3 children, in our health club…?? that’s my kind of therapy.

Thanks for the suggestion re chatting with your helpline. My aim now is more than discussion. I have however called your helpline, so many times over the last year since having my original Mx with reconstruction. My previous hospital didn’t have a Breast Care Nurse in role for my post op period - April to October. Your helpline staff however did do a great job of guiding me through, many complicated decisions and further procefures and choices. So I owe all of those kind, generous and knowledgeable ladies an awful lot. My new clinic does invest in their Breast Nurse support so I’m hopeful that, once I get used, to not having to largely research and educate myself about my choices- I will be able to pass alot of my concerns questions over to their BCNs for input. So I can get on with my real day job not that it has stopped, at all for this episode, neither has anything else. I just have to work that bit harder.

Hope you had a good day too.

Hi.
Results day for me was yesterday and I asked the question! I was surprised at the answer. When I questioned about the margins after my WLE I was told the front and back ones were irrelevant. However after my mastectomy there was no hesitation in telling me the front and back margins were 1cm and 3cm respectfully.
They found no further positive tissue and the rest of my lymph glands were clear. x