Lumpectomy done - margins question

laurie123
laurie123 Member Posts: 30
Hello everyone, so I had my lumpectomy 2 weeks ago now and my pathology results are back.  Surgeon said it is good news, nodes are clear and he got clear margins.  So I did a happy dance.  Now reading my pathology report I see that "distance from nearest margin" is greater than 5mm, but for two sections they are 1mm.  Now my worrying mind is asking is this 1mm enough?  Surgeon says it is, that is is clear and if it was less then he would do a re-section, but he is happy with 1mm.  I have no idea, but it is a tiny area!  Not sure if i am worrying too much?  I get my referral for radiology soon, perhaps they can advise further?
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Comments

  • Julez1958
    Julez1958 Member Posts: 1,101
    Hi @laurie123
    I can relate to how you are feeling even though my situation was a little different.
    The size of my tumour (5.5cm) and the fact it was lobular ( much harder to get clear margins) led to a recommendation for a mastectomy which I duly had.
    I was extremely anxious about everything to do with my diagnosis and treatment ( mastectomy , radiotherapy , reconstruction and now at least 5 years of hormone tablets) - thinking the worst might happen.
    In the end I decided I just had to trust my team who were all very experienced and had been recommended by my fabulous GP.
    I know some ladies seek a second opinion but it’s hard to know when is the appropriate circumstance to do that.
    So this is probably no help to you just to say no one said this stuff was easy.
    take care 🌺
  • laurie123
    laurie123 Member Posts: 30
    Thank you @Julez1958 - thank you for your reply.  Mine is lobular also, 8mm, caught early by sheer luck as it wasn't on the mammogram. A very sneaky scary cancer.  I know I am so fortunate how they caught it, and they say clear margins, (it's just teeny tiny clear margin to me, wish it was 5mm all around!!) I really hope you are doing well now, thank you again for your reply  <3
  • Julez1958
    Julez1958 Member Posts: 1,101
    Hi @laurie123
    I am more  than 2 years on from my initial breast cancer diagnosis and mastectomy and 14 months on from my DIEP reconstruction.
    As time goes by I adjust to my “ new normal” and try and enjoy the good things about my life and not sweat the unimportant stuff.
    People tell me I “look well” which I take to be a positive.
    Take care 🌺

  • Anne65
    Anne65 Member Posts: 425
    @laurie123 Hi, I had a very similar surgery to you! I was diagnosed with DCIS & had a lumpectomy nearly 5 years ago. I had no node involvement either. I have just checked my surgery/pathology results & my report said " lesion measure 8.5mm in extent & appears clear of all excision margins with 1mm clearance from the closest margin which is the deep margin". So looks like mine reads similar to yours. My DCIS was caught early but was aggressive. I remember my surgeon saying to me before the operation that they will check & make sure all is clear before they sew me back up again!! They checked my lesion once removed & were obviously happy that all was clear before finishing the surgery. It does sound so small when you read the margins but I guess when they are dealing with microscopic measurements, 1mm must be fine. They obviously dont want to cut out more than necessary so we just have to trust in their knowledge. I have had no problems at all since & am due to have my final mammo with my surgeon in December & then, if all is good, I will be fending for myself & just getting yearly mammos from the regional mobile bus. Good luck with your recovery & if you are at all concerned, please discuss with your medical team. love & hugs xx
  • laurie123
    laurie123 Member Posts: 30
    @Anne65 thank you for your reply and sharing your experience.  I will put trust in my surgeon and go with it...otherwise I am worrying myself sick.  I read my path report again and now in the supp section there is a ki-67 figure, which I googled, and am now a bit panicky (it says ki-67 approx 20). Dr Google has stressed me out a bit, I feel like one bit worry wort, my husband says to stop googling but I cannot help being informed & learning about stuff but it is a bit to my worrying detriment, so my new worry - is I hope ki-67 of "approx 20" is ok.....I see my surgeon on Tuesday so I might ask...I don't have my 1st appointment with my oncologist for another 2.5 weeks unfortunately. I hope everyone is having a good weekend xx
  • iserbrown
    iserbrown Member Posts: 5,540
    Please try and keep away from Dr Google 
    Use the BCNA website for up to date information 

    https://www.bcna.org.au/resource/fact-sheet-breast-cancer-pathology/
  • Anne65
    Anne65 Member Posts: 425
    @laurie123 I am glad you are seeing your surgeon on Tuesday as they should be able to answer all your questions. Make a list now of things you are concerned about & NO question is a dumb question! We are not supposed to know what all these terms mean!! It is a whole other world trying to navigate the terms, symptoms, diagnosis, descriptions of all the different forms of cancer there are. I read many posts on this forum & dont know what they are talking about half the time!! i used to ask my BC nurse a lot of questions too as they are trained & if ever I forgot to ask my surgeon something, I knew she was only a call/email away & I could ask her anything. I am not familiar with the term k-67 but like any of us, we have all used Dr Google to try & find the answers. One thing i was told early on is to NEVER use Dr Google as it would only confuse us more & although we all do it, it is true. ALWAYS ask someone on your medical team & your surgeon will be able to answer your questions on Tuesday. So take a breath, write some notes & try not to worry (yeah, its hard) but you can only "control the things you can" so try & enjoy the rest of the weekend as the stress isnt doing your body any good. I have been one of the lucky ones, coming out of this with only one surgery,15 rad doses & Im on no medication. I truly hope you have the same. Hugs xx <3
  • laurie123
    laurie123 Member Posts: 30
    Thank you @iserbrown for the link, very good advice.
    Also thank you to @Anne65 - I used the dreaded Dr google earlier today and looks like the ki-67 is something measured which may be used to indicate chemo vs no chemo on the cells growth rate.  I was to be most likely no chemo (hormone treatment and radiation only) so it got me thinking/ (worrying), but yes i am being my own worst enemy so will stay off the google sites and ask my surgeon when I see him as to his thoughts.  I will also ring my breast care nurse and make contact.  thank you so much again ladies for your wonderful advice I truly appreciate it, don;t feel quite so alone in this awful journey xx

  • Anne65
    Anne65 Member Posts: 425
    @laurie123 Great to hear you have a BC Nurse. Use her instead of Dr Google, that is what they are there for & you can contact them anytime by phone/email.  Be guided by your surgeon & medical team & Im sure all your questions will be answered on Tuesday. Take care xx <3  
  • AllyJay
    AllyJay Member Posts: 942
    As with many situations, things can be useful or not. In my childbearing years, there was no Dr Google and I hate to think how many newly pregnant women type in 'Birth Defects'...then click on images. Or type in 'pregnancy complications' and read through them all from acne, bowel changes, congestion and so on all the way to the letter Z and consequently fear a six day labour followed by a two headed baby. I've found google useful to look up medical terminology, which sometimes doctors use as common language, assuming you know what they're talking about, in order to better understand a particular word or phrase. Other than that, to try and decipher what your chances or statistics are for this or that bit of a pathology report is rather pointless anyway. Nobody knows whether they're the 95% or the 5%. Easier said than done, I know, but do try not to worry yourself in this way. Trust your medical team...and if you don't have confidence in them...then seek a second opinion. Ask them questions and keep asking them until you understand their explanation. Good luck with your ongoing treatment.
  • Anne65
    Anne65 Member Posts: 425
    @laurie123 Just wondering how you got on with your surgeons appt on Tuesday? I do hope they were able to answer all your questions & give you some peace of mind & clarity moving forward. I hope you have a clearer direction now with your treatment plan & you are feeling a little more in control.......if thats possible!! Let us know how you got on & wishing you love & strength! Youve got this!!!!! xx <3
  • laurie123
    laurie123 Member Posts: 30
    Hi @Anne65 my surgeon appt unfortunately didn't answer too many of my questions, other than to say the specialists will be in touch and to go from there. He still *thinks* I will prob be receiving hormonal therapy tablets rather then chemo, but he cannot say for sure.  So just one big waiting game really. However thanks to you ladies I rang my BC nurse and she was amazing.  Answered all of my questions as best she could, and was so thorough and understanding.  I have just had a call from radiology for a date for an initial appointment, but they cannot get me in for a few weeks, same as my first oncology appointment. And I'm not sure how the treatment will play out if oncology and radiology see me at similar times.  Not knowing if hormone tablets or if it's chemo there will prob be a waiting time for radiation?? So much still to work out. The waiting is driving me a little crazy.  I am at work today so helping me to keep busy.... thank you for checking in with me xxx
  • Anne65
    Anne65 Member Posts: 425
    @laurie123 Sounds like your head is still spinning! Sometimes we really are at the mercy of our medical specialists & yes, the waiting is something we all hate & never get used to. It also isnt good to try to plan too far ahead as the goal posts are always changing. I love the quote of iserbrown above re the rocking chair...those words are so true!  <3 I learnt early on to try & focus on the things I did know & try not to worry about the things that were still undecided. So glad you reached out to your BC nurse & she was able to answer most of your questions. I loved mine! <3 She was always there to answer my dumb questions. Im glad you have your booking for your first radiology appt & from there your medical team will work out a plan for you moving forward. Every person on this forum has probably had a different treatment path so its not a "one size fit alls". I had radiotherapy & thats all whereas many others have had the "whole works". I have also heard on the BCNA podcasts that the treatments are always changing & progressing. Im glad you are still at work as keeping busy & routine is good. Keep ticking off the boxes & try not to overthink things. We are all here for you & everyone else trying to navigate this "journey". Let us know what you are up. Love & hugs xx <3