Hi. I have had a unilateral reconstruction and at the moment have a yearly mammogram-both sides. I understand this is because around 5-10% of breast tissue can remain in the skin flaps after a skin sparing mastectomy. I have had one or 2 interesting conversations with the sonographers when they spot my situation!! as its not the norm in the UK but I feel much safer with it. But I think its an individual thing!!!! I had my first one 3 months after a further op to my reconstruction and it wasn't painful at all..just odd like the other one!! I think as skin sparing mastectomies become more the norm hopefully both side surveillance will increase too...
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Thanks for your post Avalanche. And to everyone else, for the further PMs, I am still receiving regarding the non-checking, or incomplete checking of all margins of our tissue after a Mastectomy.
This reality is somehow the case for most of us after a MX in the UK ,at the moment. Perhaps we should propose to reclassify a mastectomy as a Mega - WLE , WLE -Maxima or a Whopper- WLE to help ensure we recieve, as good a post op tissue review service, from our histopathologists, as the next lady on the list, having a WLE, will receive. A MX specimen after all is after all just another block of breast tissue - with lots of longer more expansive EDGES!.
If any of you are reading this board and are about to have MX, especially a Skin-sparing-masectomy. Please do consider adding a question to your 'big list' around margin checking. I would suggest further questions to your surgeon regarding whether ALL margins are checked, not just the muscle (back) margin. I would ask which standards re this area you Trust is working to. Hindsight is a wondeful thing btw!
Good news is that: Residual/recurrent disease (local) in your reconstruction or your MX scar over the next 10 years is very low and usually manaegable but if you are having SSM prior to your breast reconstruction for early BC, your risk of a local recurrence is c. 5-8% over ten years, This possibility does, I think, need careful thought and ideally better post-op checking to ensure best oncological outcomes for us all. I think better checking of margins/extent of disease post MX wil help you avoid being in the unusual that I am presently of situation of needing 2 further WLEs/lumpectomies after a 'Mastectomy' and then further treatment in the form of radiotherapy. Anyway all stuff to check with your surgeon. Best of luck.
I also posted my question on Post MX Margin Checking on the bext known US BC charity websit too - Breast Cancer Org Forum (similar to BCC).Over a day or so, several of ladies who have had a SSM there have also been dragging out their histpathology reports, wracking their brains re their results. Early doors, but it looks like checking margins (ALL) post mastectomy is something, thankfully and reassuringly for them, that they all already get
Touch, look, Feel Latest Campaign from Breakthrough Breast Cancer - I do - Did you?
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Thanks Ladies, so much for all of your PMs to my post about residual disease (recurrence) I've read and rereasd all. All of you at different points on this ride/journey/challenge/torture (pick your own term) but all incredibly generous in sharing details of your treatments and encouragement for me. Even though, we have never met; having been through that op; the run-up and the recovery gives you an instant connection to those who have also got through. The suggestion, was made to me, to use this forum for support, during my most hideous meeting regarding treatment to date.( I DON'T THINK THERE IS A PRIZE JUST YET BUT... ) One of those (I had a couple with the same person - a bull or bully,) who I was fair game to until, I finally caved and cried to which he replied " now I can see how much it matters to you" My reasoned arguments re why I wasn't planning on taking a treatment with a very, very small benefit in my situation but with lots of possible side effects weren't permissible... tears, however seem to be easier to deal with. More in keeping with the profile, i'm supposed to adopt for all this, I suspect. So, I guess something positive can come out of even the most negative of situations. THANKS AGAIN.. Thanks again,
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Hi Anna, Just got to your form; it seems to be aimed at researchers. I'm not one; I am someone who has had/has a dx of BC and is undergoing treatment just now - But I do manage research agencies and research, as a part of my working life. So apologies again for breaching site rules. I will reconsider how I use the forum in future. Thanks for the suggestion of using Facebook too, I don't have FB anymore - my older children take offence! thanks,
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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.
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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.
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Molliana-Thanks for your fast reply. I know!! It seems so utterly illogical. Your and my previous hospital's position on this is therefore: we check margins if it's a small or smaller piece of tissue removed; in the case of a WLE ; but not if we've peformed a masectomy, so actually removed a far larger piece of tissue with surely, far larger, longer edges!! I was just about still listening in V form maths! ( 😉 depending on your cup size, of course!) Thanks..you've starting the donation to BCC running as has another lady who pmd me.. Let me know how you get on. Keep in touch
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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 !
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Sorry to hear you can't sleep - (think that's a common by-product of all of this)... You sound like you're having a rubbish time - so sorry. I think that most women on here will have had highs and lows too but then I think around my close girlfriends who obvo haven't got BC and they have too. Think it just goes with the turf, as we all go through life.... It's pretty impossible to figure out "why" for most of us. I know its really hard and we are all intelligent and like answers - But I don't think the science is quiet there yet to provide that, but nearly..... I was given a sheet at a Breast clinic which listed all the things you could do to reduce chances of BC: Avoid red meat (I've been a strict vegetarian since early childhood 6years) Breast feed (done that forall 3 - for about 5 years in total) Exercise(yes, quite a bit well alot) Vitamin D (3 kids so always outside) you get the idea!! but I completely understand your need to know.... Too much stress is proven to be a factor in some diseases I think.. See you GP for some short-term help re the sleep maybe? It will really really help you do the days... Take good care
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Hi, In my experience it is an odd sensation rather than painful - I had 3 and the 2 nurses that remove them had a different technique!! the rip it out quick one and the slower approach!! A bit like knocking your funny bone... But the upside is the relief of getting it our is definitely worth it!! I had stood on one of mine several times in the ten days I had it... then I thre the handbag I had it in across the bed as I usually would forgtting I was attached to it at a v tender spot just above my pelvis - I didn't do it again!!! Good luck they are hideous things and only someone else who has done it... will get it XX
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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
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Thx you! Another looog delay in my reply.. If you can, please, let me know how you go on post RT? The first time I came on the forums (suggested by the last hospital of all places) the posts were pretty scary re long term side effects etc..so I'd like sone good news I think 🙂 think you have a great positive attitude re it all btw...I'm just in total and utter unceasing fury mode for now! at how on earth so many parts of my treatment have been messed up and that essentially I'm clearing up with my body and health for them! I'm sure that stage will pass in the meantime I'm hanging in there and seem v productive in the office!!!!
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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.
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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.
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Hi geeG, Pleased to hear you are finished, nearly, with this elment. Hope it's been OK-ish? Did you do 3 weeks or 4.. I can't imagine how on earth I'm going to do the daily commute for it (we're based Surrey/south London here) and I work and have kiddies... bad enough with 3 different schools and work on the best of days.. I may just get down to HR airport and bolt - I am so over it all now especially as this element for me after the my earlier mastectomy for DCIS was never in-plan originally - Have you had any shrinkage or shape change or any side effects?? I know that is usually a bit further down the line, IF , it happens? I hate all the waffle with hospitals varies for patient to patient etc etc,,,actually I just hate hospitals full-stop.... off to the gym to shke it out....!!
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Thanks for your update - very helpful. I like most of us work and have 3 young kids so I don't come onto the forums, too much but tonight I have been dropping my eldest son off at school for a 2am departure to the Ajax stadium NL!! Sounds farmore fun - I should have just got on with them!! geeG and Lexilou- do you mind if I ask you how you have ended up with radiotherapy and a masectomy please? (it is pretty rare, isn't it) I know that usually RT is reserved for those women having breast conserving tissue? I am in this situation, myself, because my mastectomy wasn't completed successfully. I felt 'nodules' which were residual disease rehrowing just a few months later. Further assessement has shown deeper than normal breast tissue under my skin envelope (i had a skin sparing mastectomy) I have had some of this removed by my first WLE and await a further followed by radiotherapy and then a very robust screening plan to keep what's been left under-check. This was all compounded by the hospital policy to not check all margins with masectomies as they somehow even after the wide-spread adoption of the SSM mastectomy still state that a masectomy means the excision of all breast tissue. I have my planning appoitnment in early April, as I just cannot go back to the "hospital" or whatever that got me here I am with a new clinic up in town and will have my radiotherapy at a site about an hour's trip from my home - 35 minutes further away than the hospital that did the mastetcomy. Sorry I can't find it in myself to be geneous re how much vaugeness there is in the treatment of BC I actually think most of it is nothing more that a strategy to avoid patients being able to formulate valid objections and questions... but of course it is the Google age and that doesn't have to stop you. Thanks for the update...... Take good care and don't try to be a superwoman 🙂
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geeG Hope all is going well and not too many effects are coming your way.. if you have energy at all after treatment and work - would you mind letting me know how you are doing please? completely understand if you dont get round to it, even if its in a few weeks time - think we are in a small club - who wants it?!! Are you with a london hospital because I know from our senior BCN that I think its Guy's are doing alot more work into post-mastectomy radiotion after widespread DCIS... someone has to!!!!!!!!
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