Are margins tested after a MX? Recurrence after 8 mths - HELP
Hello Ladies,
Looking for your help and experiences, please....
If you have had a Mastectomy, esp a Skin-sparing Mastectomy (SSM) before breast reconstruction: Could you share discuss the level of Margin Checking that you received? Usually covered in your pathology report or perhaps in your post-op meetings with your Breast Surgeon?
If you are happier to PM me, that is great - thanks
My story: I had a skin-sparing -mastectomy and DIEP reconstruction, nearly a year ago. 4 months ago, I was DX with residual (recurrent) disease, in my reconstructed breast. This is very unusual apparently. The residual disease is identical to what was there before; high grade DCIS with pleomorphic LCIS.
Some of my margins were checked by my hospital, but only the back (chest) wall and nipple area not the main expanse of the edge,under the skin evelope (flap) of the breast. My disease, extensive DCIS over a 6cm+ was, at the front edge of my breast. I found it myself, as I'm too young for the UK screening program. The residual disease is located close to the skin flap edge - same position as previous.
My new clinic, do fully test ALL mastectomy margins, and have now re examined my original blocks from my mastectomy and their histo-pathology report, states : Margins not clear, following my original MX.
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 then, 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 ......well, just madness surely? (also irritating, as their own consenting form states that they will only remove approximately 95% of breast tissue)
Just two key strokes on any internet search , 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 all 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 ovef the next 10 years. My clinic quote 5-8% risk for SSM over 10 years but 2-3% for a simple mastectomy
So why isn't the post-op checking, far, far better for us after a MX? Well at least as good as if you had had a WLE/lumpectomy
I'm from London, UK - by the way but I know lots of US best- practice in BC is picked up and used by the UK after time - so be interested in what happens for you all there re margin checking.
thanks so much.
Comments
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I don't have experience with this, but I know others who do will be along soon to give input and support. I am sorry you are going through this. -
I'm so sorry you have to go through this again. I know that my margins were tested after mastectomy because I had both positive and close margins, necessitating radiation...Also the tissue in my right breast that was removed prophylactically was also tested ...there were several benign findings there. I'm in the US though. I'm glad that your new clinic is more thorough. What is your tx plan now?
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There are several things that the general public does not understand about breast cancer because I think no one wants to scare anyone. One of those is that a person can get breast cancer without a primary tumor, you can also get breast cancer in your chest wall so having a BMX does not always help, in addition, we have breast tissue all the way up to our collar bone so a BMX definitely does not remove all of a person's breast tissue. This disease is horrible! I wish you the best in beating it back down, so to speak.
(We need a cure!)
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Hi Nolton: So sorry to hear about your situation, but glad it did not come back as invasive. Following my surgery for DCIS, I too had a focal point of positive margin on the superior margin. All margins were reported on my pathology report. My BS was quite adamant that I did not require radiation, but after extensive research and much emotional distress, I opted for radiation. I found several studies that supported both positions, so simply had to pick what I was most comfortable with. I had radiation. There are many studies that do show that recurrence is still very uncommon even with positive or close margins following a mx, but the thought that cells were found at the margin, I just could not leave as is. Your advantage now is that radiation would be an option for treating a recurrence, whereas should I ever have a recurrence, that option is gone for me. There was no clearly better decision here, at least for me, just what I could live with better. Good luck and find reassurance that you still have radiation in your toolbox! -
I had to get my report out to check. It says <1MM from deep margin, all other margins negative >5MM. I'm sorry you are going through this.
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I had skin sparing BMX and did have clear margins. Despite that, I had a recurrence 15 months after finishing chemo. My cancer recurrence was actually in 2 different areas...one at previous tumor site (just above nipple), and a second high up in the axilla.
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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.
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Also a big thank you to Beesie - well known to many on the DCIS forums. Knowledgeable words and sound advice as ever. Thanks for generously staying close to these boards. I'm sure your life is very full.
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This may be a stupid or obvious question to some but to me I have no idea. How are recurrences caught if you have a BMX and mammograms are no longer required? I found my lump in December 2014 on my left breast while they were 'watching' the right breast for the past year. I had a nipple/skin sparing BMX on 2/05/15 then reconstruction DIEP on 2/18/15 and an area of skin was removed from left breast so radiation wouldn't be required. How will I know if the cancer comes back? I didn't have radiation or chemo. I'm getting a little freaked out that maybe I should have removed everything.
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Hi 925,
Same situation here in the UK, mostly.
If you have a reconstructed breast/s; most hospitals will not mammogram that breast/s as part of your ongoing screening program after BC. I imagine this is based on the belief/hope! that there is no breast tissue remaining in there. Recurrence/residual disease after MX is also a very are occurence (well that's what they say) so a numbers odds game will be in play too, won't it?
Luckily for me, not that I feel very comfortable at all saying that, my new clinic do mammogram, anything and everything that looks like a boob! but may draw the line if you were sporting one of those 'knitted knockers' ( they are for real here in UK btw) See link to site to follow:
http://www.knittedknockersuk.com/
Perhaps request a mammogram anyway 925 - you never know what they may agree to at your clinic if asked. I am very grateful it happened for me, as that was the only true way my residual disease was fully DX.
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925- The bottom line is that for all of us with mastectomies there is still some risk of another tumor. There are breast surgeons and radiology centers that routinely do mammography on DIEP (or other tissue) reconstructions. If you feel more comfortable with this type of monitoring you can ask around and most likely find doctors who are more than willing to order the this. (Important - you will need to find a radiologist who has experience looking at reconstructions.) Since being diagnosed and having mastectomy and tissue reconstructions (DIEP and sGAP) I have been followed by two different breast surgeons (completely different and separate medical practices). Both have ordered yearly mammography (which were done at two different facilities.) I am somewhat high risk because of family history and am comfortable being monitored this way.
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Thank you Nolton9 and besa I appreciate the information and I will follow up with my doctor.
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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
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I'm sorry about your recurrence, Nolton9.
For those of you who had a local recurrence, did you have radiation? It's being recommended to me because of tumor size (no positive nodes), and I'm on the fence. The fact that I had a nipple-sparing BMX is part of the considerations as well. Thanks
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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!
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