Sentinel node biopsy came back positive

lgray3911lgray3911 Member Posts: 97
edited March 20 in Newly diagnosed
Hi everyone
My name is Laura and I was diagnosed with invasive ductal carsinoma in my left breast on the 10th of Feb. I have tiny breast so the cancer covered a large area so a mastectomy was necessary. I opted for bilateral mastectomy and had the op on the 9th of March. It all went really well and am recovering really well too. BUT on Friday I got my pathology results back and the nodes tested positive so I'm back to get more out this Thursday. Am confused and terrified and devastated. The nodes looked clear in the ultrasound but are not. What's does this mean? Does it change my prognosis? Has this happened to anyone else? 
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Comments

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,089
    Hi Laura @Igray3911 sorry you have needed to join us on this roller coaster ride. This does happen when nothing shows on your ultrasound but pathology is different when looked at. 
    Your team will plan according to the pathology what will be the best options for you to rid your body of Cancer. 
    Do you have a breast care nurse ? http//www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

    have you been given a MY journey Kit? https://www.bcna.org.au/resources/ 
    On the other post I read you will look at reconstruction later ... here is a link http://www.reclaimyourcurves.org.au/ they will be able to give you information regarding your options.  

    It is normal to feel confused and terrified we  all do when we are first learning the twists and curves that make up our Roller coaster ride.  The good thing is your team know that the node isn't clear therefore they will tweak your treatment to take that into account. 
    Hugs 
    Soldier Crab 

  • lgray3911lgray3911 Member Posts: 97
    Thank you so much. Yes I have a nurse and I have the kit. Where did my other post go?? I thought it hadn't been posted! Ha! 
  • primekprimek Broken HillMember Posts: 3,200
    edited March 19
    Hi @Igray3911. Lots of women have positive nodes and do really well. They need to take more nodes though to try to ensure there are no others. The reason they take the nodes is to check under the microscope to be sure. Sometimes there are just a few microscopic cells evident and it hasn't really affected the nodes yet to show on a scan. Frustrating, but why they take them. 

    The number of nodes determine if you will need radiotherapy or not. Your pathology result will determine need for chemotherapy. Don't think because of positive nodes your cancer isn't curable...it still is. 

    My niece had 10 positive nodes and had a Her2 positive cancer. 14 years on she remains cancer free. This site is filled with survivors who had positive nodes and still going well.

    Have you got a my journey kit?

    https://www.bcna.org.au/understanding-breast-cancer/my-journey-kit/

    Have you a breast care nurse?  They can be a great support and a wealth of knowledge to help you in this challenging time. 

    I'm sure many more ladies will be posting here with more knowledge in this area than myself. 

    Kath x
  • primekprimek Broken HillMember Posts: 3,200
    Must of posted same time as soldiercrab. So good to know you have those resources and support.
  • RNSWRNSW Central Coast NSW Member Posts: 121
    I know it's confusing... I myself went into surgery thinking the lump was 1.1cm then when I got pathology back it was 2.7cm and in my lymph nodes.  I think scans can only tell them so much but it's  definitely hard to get your head around it. All the best xo
  • GlemmisGlemmis Member Posts: 204
    Hi Laura, I had lumpectomy & sentinel nose biopsy last July & on frozen section at time of lumpectomy the node was negative but on further testing they found cancer so 5 days later I had mastectomy & 12 nodes removed. A further 2 had cancer. It was a huge shock as I was told I would probably just have radiotherapy but have had chemo as well. As the other ladies have said they could be microscopic. The waiting is hard. Best wishes.
  • melclaritymelclarity Member Posts: 2,425
    @lgray3911 Im sorry to hear of what has happened, what was your pathology results for the breast tissue? You said IDC but what Stage and Grade? I had no node involvement, however I had some removed for pathology testing and it was negative. Pathology and ultrasound are very different, a bit like biopsy results, there pretty useless, lumpectomy is the only way to get a proper diagnosis. As mine was a recurrence IDC Stage 2 but Grade 3 I was automatic Chemo no radiation as I did it 4yrs earlier. Its not unusual and I agree absolutely best to get it out and get a full diagnosis and know you got rid of it all!! Hugs hang in there Melinda xo
  • lgray3911lgray3911 Member Posts: 97
    Melclarity mine is stage 2 grade 3. The original treatment plan before nodes came back was chemo once every 3 weeks for 3 months then chemo once every week for 3 months. They had the team meeting on Friday are on the fence as to whether radiation is necessary at this stage?!?! 
  • melclaritymelclarity Member Posts: 2,425
    Hey Laura! Oh ok sounds like my treatment I had FEC 4 x 3 weekly and 8 weekly Taxol. Im guessing theyre waiting for your further surgery of more nodes removed. Im sorry, I can imagine how damn overwhelming it must be honestly! Its not unusual however, I have heard of that before, Im wondering if because they did a Mastectomy they didnt do the sentinel node dye? in which highlights the node involvement? so have to go back to surgery? 
  • primekprimek Broken HillMember Posts: 3,200
    I thought you might find this article interesting as it explains the nodes really well.  Maybe further removal of nodes will determine for certain radiotherapy. 

    https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/surgery/surgery-lymph

    Since we are all so nosy...what type of cancer do you have. Is it Oestrogen  (or Estrogen ) +, Progesterone + Her2 + or what is known as triple negative when all 3 are negative or a combo? It's a lot to take in at the beginning.
  • lgray3911lgray3911 Member Posts: 97
    They did do the dye and only 2 showed up??? Cancer is ER + 30% PR - HER2 +
  • melclaritymelclarity Member Posts: 2,425
    Uuuugh! Ok, totally get your frustration, gee Id be annoyed! I honestly don't know, but if there are more absolutely better out and then you can plan for a concrete treatment and know where you are heading. Its so difficult right now, so one step at a time, its hard because you put yourself in their capable hands, so I know for me having confidence in my Specialists is so important. Sending a huge hug! Its crap! but one thing at a time as your direction becomes more clear! Hopefully some others can help as to how that happened...Melinda xo
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
    Sometimes it's more useful to take a step back and let things progress around you, just because stressing over them won't change the outcomes. Like someone's thrown a stone in the still lake you were painting and now all you can really do is watch the ripples settle.

    It sounds like you're staying completely informed and are really interested in how it all works, so you are keeping yourself on the best track for yourself that you could possibly be on. :heart: 

    Please keep us up to date with how you're going.
  • lgray3911lgray3911 Member Posts: 97
    Girls thank you all for the info and support. I was devastated on Fri and Sat mainly because I was in shock and had not factored that into my plan of action. I am a very logical person and a bit OCD so had got my head around 3 stages; surgery, treatment then reconstruction. So this threw me!! I picked myself up on Sunday and am ready for round 2. Am Irish and have 2 small boys so I know I'm strong And they are my motivation! My husband has been a huge support and is good at picking me up when I'm down even though he's not used to it because I am so strong and independent usually. Anyway that's a bit about me. Thank you all so much again and Fuck you cancer
  • lgray3911lgray3911 Member Posts: 97
    Sorry probably not supposed to swear on here woops! 
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