RESIDUAL/RECURRENT DISEASE AFTER MX -

[Molliana]

Hi.
Results day for me was yesterday and I asked the question! I was surprised at the answer. When I questioned about the margins after my WLE I was told the front and back ones were irrelevant. However after my mastectomy there was no hesitation in telling me the front and back margins were 1cm and 3cm respectfully.
They found no further positive tissue and the rest of my lymph glands were clear. x

[Nolton9]

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

#checkingmyboobsdidyou?  #stopwomendying  

Touch, look, Feel  Latest Campaign from Breakthrough Breast Cancer - I do - Did you?

Thanks again,

[Avalanche]

Hi Nolton9,

I hope you are doing well. You have posted a topic of interest to me. I am surprised to see you mention the possibility that some hospitals may not be testing all margins post mastectomy. I had never heard that and assumed all were doing this.

In my case all my margins were checked post mastectomy and just as well as nearly all mine were found to be positive i.e that is not clear. My staging was early stage with no nodal involvement so the positive margins was a great surprise. No further surgery was possible as the surgeon removed all tissue possible. I was advised the positive  margins were due to me being small breasted. I had chemotherapy and radiotherapy post mastectomy and 6 years later am doing fine (everything crossed, touch wood e.t.c !!) with no evidence of disease found on MRI checks.

Have never met anyone else who had positive margins post mastectomy with early stage and very little research on as less than 5% chance of so would be very interested in anyone else who had same diagnosis!

My first time posting after many years reading here & seeing everyone's great support for each other. Have had advice from the helpline nurses who are excellent too.

Best wishes to all

Avalanche

[Nolton9]

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,

[Nolton9]

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.

[Anna_BCC]

Hi Norton

Genetsting a discussion is very encouraged on the forum but ad hoc polls and surveys are against our terms and conditions. Please do contact us using the firm I attached to my previous post if this is what you are intending. There does seem to be many many areas of Breast Cancer that still have huge question marks and I encourage you to call our free helpline 0808 800 6000 Monday to Friday 9-5 and Saturday's 10-2. Our nurse specialists may be able to help with your question.

I hope you are enjoying some spring sunshine amongst all your Sunday chores.

Best wishes
Anna

[Nolton9]

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.