Dear Nolton, thank you for your thoughts of Breast Cancer Care and the fundraising you have chosen to undertaken as a way of encouraging people to respond to your post. Personal surveys and polls are not allowed on the forum as per our terms and conditions; because of this I am locking the thread.
We have strict guidlines for research using the forum community, please see attached form and information. However, anyone can post on our Facebook page, perhaps you could share your questions there as well?
I will also pass this onto our Policy and Campaigns Team as we are always interested to know what our users feel.
Your thoughts, suggestions and ideas are always read with great interest. Thank you for sharing them with this community.
This is quite a 'close-knit' forum, in terms of numbers of us; but I usually get some good replies - thanks
So, If you have had a Mastectomy, esp a Skin-sparing Masectomy (SSM) before breast reconstruction:
Could you share the level of Margin Checking that your pathology report covers; or that you are aware that you had, perhaps from your post-op meetings?
If you are happier to PM me, that is great.
My story: I had a skin-sparing -masectomy and DIEP recon, nearly a year ago. 4 months ago, I was DX with residual (recurrent) disease, in my reconstructed breast. This is very unusual; but
Some of my margins were checked by my hospital only the back wall and nipple area not the main expanse of the edge,under the skin evelope of the breast. My disease, extensive DCIS was at the front edge of my breast
My new clinic, do fully test mastectomy margins, and have now reexamined my blocks from my mastectomy and their histopathology report states : Margins not clear.
My hospital (previous) have stated in response that as a MX removes all breast tissue, there is no standard requirement for them to report the margins of a MX. But they helpfully, move on quickly to say, that had I had Breast Conserving treatment (a WLE, Lumpectomy, BCT) they would have checked all the margins!!! So that's nice and maddening and a bit ......well, bizarre surely?
Just two key strokes on Google tells me that no-one in the field; not the leading hospitals, the thought leaders or the charities, believe any mastectomy can be a complete removal of your breast tissue. In fact for a skin-sparing mastectomy it is acknowledged, widely in the research, that the challenge of complete clearance is far greater, as is the risk of a local recurrence or residual disease.
So why isn't the post-op checking, far, far better for us after a MX?
It's as if the 'front end', the headline grabber, of a better cosmesis (result) has been innovated but the Q&A behind that innovation, just never happened (well my experience - hopefully you will all confirm differently)
Thanks for your support. I managed my whole treatment throughout my reconstruction, only telling my 3 children a very 'sanitised' , postitive version of what was happening to me and that it was all sorted in the Summer Whoop whoop!. I was better and good to go. Now I find myself, with very scared 13 year old and 11 year old sons - my 5 year daughter old is too young, thank Goodness. Their worry alone makes me sure this can't keep happening... and I can stand and say, shouldn't have happened to me either.
Please spend a minute of your time in that big bundle, file, carrier bag of paperwork we all have hidden in some cupboard!!! (mine lives outside in our bike shed!!) if you've not burnt it and ask any of those acquantances, you may have made, because you have Breast cancer to look too 🙂 Margins....
HUGE THANKS !