Are margins tested after a MX? Recurrence after 8 mths - HELP

Dear Ladies,

Thank you, thank you for your fast input. I am delighted that my 'hunch' that your surgeries, in the US, would be likely to be governed by a more rigorous approach, was correct. You are receiving better care and preventive measures there, than we are in the UK, largely. I am making sure I make some noise on our equivalent UK forums about this issue. I think it will be a nasty surprise to most women after a MX - such a life-changing experience anyway. And am challenging my previous hospital - an international cancer centre, in London re this nonsense.

For the moment because of a seemingly, outdated National Cancer Guideline, most UK hospitals DO NOT FULLY TEST MARGINS after a MX. Even though, as we all know, A MX can never catch all breast tissue, even with the best surgeon. My consent form even stated that approximately 95% of breast tissue would be removed. But because this outdated guideline is still there, and being followed at a local level - maybe even from before the advent of SSM they are OK to carry on and leave women at risk from a standards point of view. I would argue that ethically and morally, that they are on very thin ice.,

Meaning that I and a number of other women after MX are receiving worse histopathology input than had we had a lumpectomy or WLE. And also worse on-going screening care than those ladies. Actually just about worse everything, that BC services can offer.

Thanks goodness for my new clinic - but that's not an answer for everyone here.

I am slowly finding other women who are in a residual/recurrence situation after a skin-sparing mastectomy. There needs to be more of us going through this scnearion over here to make a compelling argument.

I agree that there isn't a currently a cure, as Music Lover said, We are however all told to continue 'Check, check, check' after a BC, event by the hospitals, but here in the UK the hospitals themselves are not taking their own advice re checking at all seriously - they don't bother!! Outrageous.

Thanks again and I wish you all the very, very best of luck.

Hiya,

925 - I'm so pleased that we've been able to help you now, even if just a little. I think the headline is that as Besa says most of us who've had a MX will have some breast tissue left . Those of us who have opted for a skin-sparing mastectomy to facilitate our immediate reconstructions will clearly have more likelihood of higher levels of breast tissue due to the remaining skin envelope. then there's a very few that may have higher levels due to poor surgical technique or a technical failure.

Whatever the reason, or levels it is worth monitoring that new breast just as closely, I think, using all the assessment tools that are there for any breast - it may be very unlikely thankfully that there will be a problem in a reconstructed breast, but it's definitiely not impossible (hello!!!). If all hospitals here is the UK were as complacent as my previous hospital I and my family would be in a very big hole right now.

I was nowhere near as well informed as you seem to be 925, just after my op. We all have to question the care we are given. Does it make sense? or is it just lazy following of procedures. I'm a buyer of marketing services in my real life; I question everything in that role, everything!! and I expect top levels of service and support from my suppliers. This service should be viewed in just the same way.

Good luck

Hi LRGinger

Sorry to hear that you have a tough decision.

No, I wasn't recommended any radiation after my initial MX and reconstruction op. Here in the UK, our Breast Care guidelines allow the hospitals to concentrate on the invasive element only, rather than any non-invasive disease which exists alongside when they are deciding on the need for RT. My DCIS was over 6cm in size and the high-grade type, as well as close to the skin (superficial) but my invasive component was 'just' a 1mm area of ILC. (Something tells me, even as a non-clinician, that the big 'ole area of high-grade, superficial DCIS probably should have been invited to the MDT meeting to discuss my next treatment steps! I think it may have made my treatment plan very different.)

The possibility of RT was, however discussed at my some of my pre-op meetings with the breast surgeon however. But again "guidelines" for breast surgery mean that women who have had a mastectomy do not have all their margins thoroughly checked here; nor in lots of cases is intra op xray used to ensure the resection of disease has actually been complete. Research shows this can be very useful in cases of extensive DCIS which of course is not normally visible to the eye, in the ops. I imagine this does happen for you all; as your care seems to be far more thorough and advanced than here generally?

My disease was always very superficial, I found it myself as I'm below the age of the national screening program here (starts at 50 for most) and the actual "lumps" or really nodules were tiny (5mm, 7mm 3mm etc) but always obviously close to the skin even, before I have the op. I unfortuanetly had some remaining patches of DCIS left in my mastectomy skin flaps, these weren't checked for disease after the op. I also had lobules and ducts left in due to a technical fault spotted in some of the mop-up ops I've had. That is very, very not the norm.

As some of the earlier ladies have commented in this thread any women who has had a MX is at risk, albeit small of a recurrence over the next 10 years or more. My clinic state 5-8% in the case of a SSM when your initial dx was early BC. This seems to be consistent with the research out there. (Thanks to Beesie for sharing those docs)

I was also 'on the fence' for the hospital when we discussed hormone therapy and I know that is a far harder spot to be placed in; opposed when you know you just have to do something. But you always have time to make an informed choice and to input your own views and to just to say'no I don't think the benefits are enough'. Our hospitals don't expect that from the patients - definitely not!!. Yours may be different and even if they are not that is their issue you should still be part of all of this - Times have moved on and I think that it is a good thing that we are all involved in our care not just getting it done to us. I think you like I, are in the position that your type of cancer was more of a challenge to assess and accurately estimate. So radiation is the insurance against the microscopic entity that might just remain. It isn't risk-free as I'm sure you know but the risks are happily much lower with the modern techniques which are out there.

There, that's my morning rant over and I'm off to a bit of ballet - barre.

Good luck!