Forum Discussion

Moomincorn's avatar
2 months ago

Lymph node visibility in imaging

Hello,

I've been reading these forums for a few weeks and finding them very helpful - thank you to all that share their knowledge.

I'm trying to understand more about lymph nodes and imaging. 

For my backstory... My ultrasound showed nothing suspicious in my lymph nodes. 

A month ago I had a lumpectomy for IBC (1cm ER+ PR+ HER2- grade 1) and sentinel node biopsy where they found spread to 3 of 4 lymph nodes including one with 0.3mm of extranodal spread.

On Monday I had CT and whole body bone scans.

Today the surgeon rang to say the scans were all clear however the next step is more surgery to remove 12-20 lymph nodes. This sounds like axillary lymph node dissection. I'll get the reports and paperwork next week to make better sense of it and then I'll chat to my breast care nurse.

We're a bit puzzled over how my lymph nodes are so involved for such a small grade 1 tumour. 

I'm wondering whether my involved lymph nodes should have shown up on the ultrasound, and whether nothing showing up on the post-surgery CT is a useful sign that other nodes might not be involved.

Does anyone have experience of lymph node involvement without it showing up with imaging? Or do they show up on some types of imaging but not others? Or did you have axillary lymph node dissection even with a clear CT scan?

20 Replies

  • Hi

    This is my first message on here.  I am reaching out to make sure i am using the site correctly.

    I have recently had a scan that showed up abnormality in two of my left armpit lymph nodes which led to further testing and a 1 cm lump was found in my left breast and my GP has advised diagnosis has come back with a 95% + chance of cancer.

    I have an upcoming appointment with a Surgical team and my understaning is i will need to have a biopsy to determine if it is cancer and what stage.  

    I have listened to a couple of podcasts and read a lot of messages and have found it to be helpful already.  I look forward to having a network of people that i can ask questions, share concerns and understand what i may be going through in the not to distant future.

    Please let me know if i am on the right track for what this page is intended for.

    Kind regards

    • Christina_BCNA's avatar
      Christina_BCNA
      Community Manager

      Hi Squaw1967​! Thank you for reaching out and sharing what you’re going through - it takes courage to post, especially when you’re facing so much uncertainty. You’re absolutely using the site in the right way. This community is here for exactly what you mentioned: asking questions, sharing concerns, and finding support from people who truly understand.
      It sounds like you’ve already taken proactive steps by listening to podcasts and reading messages, which is such a positive way to prepare yourself. Waiting for further tests and appointments can feel overwhelming, but you’re not alone, most people here have been in that space of ‘not knowing yet,’ and it’s okay to lean on others during this time.
      Please keep posting whenever you need to talk or ask questions. You’re doing everything right, and we’re here to walk alongside you through this. Please do reach out to our Helpline anytime you need to chat on 1800 500 258 ❤️

  • A little update because I met my breast care nurse today.

    She had a sozo BIS machine which was the easiest thing I've had to do so far - stand and hold onto it for 30 seconds and it measured various things to create a baseline to monitor for lymphoedema. Ideally it would have been done before the sentinel node biopsy but at least we've got data before axillary dissection.

    She's going to track down information about my breast density and it sounds like MRIs will be an option for future monitoring.

    And I've got a few printouts to read about lymphoedema.

  • Hi Moomincorn.  I had a similar initial diagnosis as you and during surgery they found a second lump and lymph node involvement and a follow up MRI and more surgery found more.  It was a huge shock at the time as I had no idea that some scans don’t show everything - particularly if you have dense breasts.  I now have annual MRI scans as we know that mammograms and ultrasounds won’t detect everything in my breasts.  I encourage the women around me to ask about their breast density so they can request MRIs or at the least have a conversation with their GP or surgeon about the most suitable scans for them.   Talk with your surgeon once you are through your treatment about the best scans / process for surveillance.  

    Hang in there and always ask questions to clarify anything.  It is a confusing, daunting time but you work through it.  

    Take care x

     

     

    • Moomincorn's avatar
      Moomincorn
      Member

      Minnie18​ Thank you for sharing.

      And thank you for the nudge to talk to people about my breast density and future imaging. 

      I had breast density on a list of questions after my lumpectomy but there were so many other questions to squeeze in that I forgot to ask it. I get the impression from what I've read in my pathology that they are somewhat dense but a medical opinion will be helpful.

      As for imaging, it's helpful to know that MRI might be better for picking up issues. That will be good for me to discuss with the surgeon, especially if anything else is found in the axillary dissection when the CT scan showed nothing abnormal. 

      I've added both to my list of future questions!

      • arpie's avatar
        arpie
        Member

        When you have your mammograms now (depending on what state you are in) they are required to advise you of your breast density, Moomincorn​ as it is so important on the screening tests actually 'seeing' the cancer.  My ILC was missed, as my breasts were very dense.  I was in my 60s - so it being a 'younger woman's problem' is total rubbish!   An Ultrasound is recommended as well as Mammogram (some have an MRI too) at the same time as the Mammogram ... I have mine late next month.  8 years since the first detection. 

        I've never had an MRI yet ..... 

        Take care

  • Its kinda good they caught them  and they showed up in a scan and now you can remove them .At least they checked and didn't assume nothing was there when only a smal tumor in breast. 

    Each scan has different views and done for different reasons and can see different things. Nodes are quite small and grouped and would be hard to see changes .

    Cancer by nature are mutants cells and unpredictable.

    It very common to have a pre surgery/ chemo test  say one thing  when they only take a tiny biopsy of one node , then the results change later after some treatment  and surgery when they can get bigger sample for more patholgy . Or even have  very early BC ,chemo , double masectomy  with recon , then cancer cells turn up later  and need axillary  dissection.

    Lymph nodes are  weird, its funny how there is no standard number everyone has. They do their job and filter. 

    Do make sure you get a presurgery ImpediMed bioimpedance spectomter sozo scan if you can, and haven't already. Having a  baseline makes it easier to track fluid levels in your arms  once the post surgeical swelling goes down. 

     

     I can't even remember , but they showed up on something  mamo or us, had biopsys , cat scan then bone scan,mastectomy & nodes got  choped  out  and all got tested , cancer was in 4 out of 11 nodes.,chemo , radio .... still here 18 years later .

    Got lymphodema ,not that everyone does ,  but that can be easily managed once you learn how  and get  the hang of it,get used ot wearing a sleeve etc,  early detection & being proactive  makes a big difference so no one needs to end up with a big arm.  Now a days with early screening programs implimented in many public and private cancer clinincs and private therapist , the incidence  of anyone getting lymphodema in the first few years is reduced dramatically thanks to modern research and programs and BIS machines. Something like 90% people can be prevented from developing  lymphoedema. 

    Lymphatics are amazing part of our body I never new i had until BC, how they compensate when injured and move fluid  like tree roots and intereact with digestive and circulatory system .Don't be scared of lymphoedema- its more important to get rid of the cancer. 

     

    • Minnie18's avatar
      Minnie18
      Member

      Hi Kristen.  Thank you for sharing your experiences.  As someone with a similar diagnosis more recently, it makes a difference to hear you are doing well so many years later.  I hope to have the same luck and to be here trying to remember the details too.  I am so grateful for this network for helping all of us feel less alone in this journey.

    • Moomincorn's avatar
      Moomincorn
      Member

      Thank you Kristen​ - sounds like you've been through a lot.

      I've never heard of a BIS machine so I'll try and look into whether that's an option somewhere near here. So far my googling isn't showing up anything but hopefully my breast care nurse will know more.

      Lymphodema does worry me living in a regional area and wondering what precautions I will need to take long term, whether I can continue my physical outdoors job, etc. Hopefully another thing that my breast care nurse can help me understand.

      Thank you for your wise words.

       

       

      • Kristen's avatar
        Kristen
        Member

        https://www.impedimed.com/patients/find-a-provider/

        That is the link to find the BIS machines. But yep in country towns probably not around as they are expensive machines so only big centres have them.

        Its not a problem if you don't. Good old tape measure has worked for many years. Plus it is something you can learn or be taught via video conferencing  if you start to notice any heavyness , ache, tight clothes or jewllery  or swelling.  Learning your risk, and what to watch for, what and where /how you can access any support if needed can help take the fear out of it.

        It won't happen suddenly. and there is no reason you won't be able to be physical - in fact the more muscle you have the better it move lymph fluid.

        Sometimes it just needs to be taught to take another route since the main highway has  been washed/cut out. 

         BCNA have some great webinars, this is one specially for beginners who don't have lymphodema , just need some info. Like  being a bit more careful with cuts and bites .prompt hygiene,  if at risk . Wearing a compression sleeve if swelling does start. ( In some cases it may help before swellign starts- that the benefit of the BIS machine) We have a huge benefit just knowing about it. It can be managed, life continues, breast cancer just sometimes rejusts some things .  https://www.bcna.org.au/resources/webcasts/understanding-lymphoedema-following-breast-cancer-treatment/

         

  • HiMoomincorn​  Yes I surprised them i had 3 of the 4 axilla lymph nodes that were removed show up not what they expected and on the original scan before surgery it was thought the nodes were  enlarged due to a reactionary response. 
    I had  chemo prior to surgery due to my invasive DC in hopes to shrink it.  Instead of going back and getting more lymph nodes removed extra radiation was chosen. My original plan was 12 rounds of radiation to clean up. Ended up with 25. And full on from the sternum to  collarbone  across to the armpit.   Being left sided I had Deep breath as well. 
    There is never 100% guarantees with all this that the little buggers haven’t escaped. They can only do their best to eliminate the possibility.
    Looking forward to the day when research finds a way to test for cancer cells that have decided to escape. 
    Im also on Hormone blocker and Palbociclib (Ibrance) For the foreseeable future. 
    Definitely take someone with you to your next appointment. 
    the radiation was probably the easiest part of all my treatments. 
    If you 🔎search cancer grading you will find how its done. 

    • Moomincorn's avatar
      Moomincorn
      Member

      cranky_granny​ Thank you for describing the path you went along. It's a bit of a mind spin when there are so many different approaches trying to get to the same point of kicking the little buggers out!

      I haven't seen anyone yet to talk about how much radiation or what type of hormone therapy will be suitable for me. I get the impression that won't happen until after axillary dissection surgery to determine my stage. 

      • cranky_granny's avatar
        cranky_granny
        Member

        The medical oncologist is usually the one that prescribes the ongoing treatment. I went public for all my treatment the treating team discussed and worked out what path my treatment would take. As I had chemotherapy to start I saw the  her first. I was told i would go onto some form of hormone therapy once i finished active treatment at the time it depended on the surgery biopsies. 

  • Hi Moomincorn​ I was diagnosed with IDC er+ pr+ HER2- 2cm stage 2 grade 3 with 1 lymph node involved. My lymph nodes looked normal on my ultrasound, and my surgeon said they were very small when he removed the sentinel nodes. However, one did have cancer cells present, which he was a little surprised about, although he did say the size and shape of the lymph node doesn't always reflect what is going on, only pathology can say for sure. As the other nodes were clear, and I was having chemo, an auxiliary clearance wasn't recommended for me, they treated the area with radiation after chemo. 

    Good news your other scans are clear. My understanding is that these are to check to see if they can find any evidence of the cancer spreading beyond the lymph nodes.

    Definitely contact your breast care nurse, mine have been wonderful, and helped me understand test results, various procedures and why I was having them.

    I found it useful to have someone else with me for my appointments as it's a lot to take in, and can be overwhelming at times.