Hi N9, I am interested in your posts as I had a skin sparing mx with immediate recon in Feb 15 and I was not told that the chance of recurrence was 5-8% as opposed to 1-2%, if I had known this it might have affected my decision. So far so good but all I was told was to keep an eye on the recon and report anything unusual which dies concern me. Xx
Thanks to everyone who has PM'd me and generously shared their experiences - (surprisingly helpful, personally, I'm not feeling quite as "freaky" or the 'Friday afternoon, iffy, job' as my treatment outcome, left me) Across this forum and a couple of others, I am aware of a growing number of women, back in treatment, despite having had a mastectomy in the recent or medium past.
Happily, for the most part, though, those who responded to my post, re suffering either residual/or recurrent DX were concerned about the risks of residual/recurrent disease, after a skin sparing mastectomy and how they could prevent this happening to them.
I have now spoken with Breast Cancer Care re my situation and what they, as the providers, of neutral, woman-focussed information, are currently doing, to ensure that women are well informed on the issue of recurrence/residual disease after MX. Growing in importance, as skin sparing mastectomies which support, lots of different types of breast reconstructions, are on the rise here and elsewhere.
Source: National Mastectomy and Breast Reconstruction Audit, 2013
So, whilst a skin-sparing MX may offer a huge, cosmesis, advantage to those women who qualify for immediate reconstruction; it does, come with a higher risk, of local recurrence. My clinic, (who I would say are considered an excellent source of latest information and guidance - this view was confirmed by Breast Cancer Care) tell any woman, pre-op, who is considering a skin-sparing mastectomy as part of Breast Reconstruction, that the chance of recurrence is 5-8% over 10 years, opposed to the 1 to 2% chance over 10 years, if you opt for a simple masectomy instead. Something to add to that long-list of questions for your surgeon, maybe?
That's still odds, that are hugely in our favour , even with a skin-sparing mastectomy, if you had a dx of early breast cancer. BUT the take-out is you do need to remain, very vigilant and be aware, that this risk is there. A mastectomy as confirmed by Breast Cancer Care, never achieves complete clearance of breast tissue, particularly at a cellular level. But that said, happily, most recurrences are caught early by women themselves, outside of their regular screening. Breast Cancer Care already devote alot of effort and resource to this area, encouraging women to self-check; and get to know their reconstructions etc even after a MX (Same info applies to any woman who has had BC too.)
The other issue here, that Breast Cancer Care are considering, is the widely held, current, position of most hospitals not to regularly screen reconstructed breasts at all with any of the tools available to them. Surely any remaining breast tissue has the potential to develop further disease? - it is just that, breast tissue and deserves, as do we all, equal vigilegence to ensure optimum outcomes - longest healthiest life, ahead for all of us.
Some clinics are already using mammograms etc on reconstructed 'breasts' (well ,there's at least, some breast in nearly all of them - why not go crazy and check it?) to screen, to support women in their efforts - this approach will detect some types of disease, especially the common finding of DCIS, if it is still there after your MX or recurs, at a later point far, far, earlier.
Early dectection is the 'battle- cry' of all Breast Cancer messaging and also a dominant message within the literature that all the hospitals give us? I would like to see this message and excellence extended to those of us that have leant in and had a mastectomy too. For any breast tissue, anywhere, that we are still sporting...
Now I'm off to my day job 🙂 Any thoughts/comments would be very much apprciated
Firstly, thanks to everyone who has PM'd me, so far, following my post re residual (recurrent) disease disease Dx after MX.
Thankfully, so far, most of the replies, I've received are worries/ fear of the possibility, rather than experience of. Not all tho.
There is, of course, alot of info out there re SSM and the increased risks of local recurrence when this possibility is compared to a simple mastectomy. It's definitely something we should ask about/ find out about when considering choices and next steps. In the slew if pre-op info, a year ago, I didn't join all those dots... quite quickly enough....
I will put something up here next week when I can make sure it's latest, best guidance. Or maybe the BCC helpline nurses can input something here, too?
Thanks so much.
Hi Yvie - Thanks for your reply - I have PMd you..
I would be really interested how your recurrence presented itself? I had a mx in Feb last year and this is something they gloss over!
Good Afternoon Ladies,
Very Interested, to find out, if any of you have experienced a diagnosis of either RESIDUAL or RECURRENT disease following a mastectomy, please? (particularly within a year of first op)
if that is you, too, I'd really like to hear from you (by PM if you prefer) and where you had your surgery, if you are happy to share please?
My 'story' follows - I am 44, mum of 3 kiddies - I found more, similar evidence of disease, just 8 months out from my mastectomy and breast reconstruction and am going through further treatments, with another hospital, just now - (v thankfully still with a good prognosis). But whilst I thought I was a 'rare breed' (don't we all want to be that? - just not in this context tho!) to be back so soon, after mastectomy..... Whilst booking another element of my treatment, I have been approached by another lady, to say that her friend has had a very similar issue, at the same hospital - and is also back in treatment.
Unexpected outcomes do happen, but they can't just happen and not be improved upon quickly and openly, I firmly believe that. This site is a great, reasurring resource for sharing and support and generally looking out for each other; during what can be a very isolating, frustrating experience. There are alot of us and that helps to change things.
Thanks for reading my post.... X Please get in touch when and if you can.