Confusion with path results after ALND- no lymoh nodes found

Hi all, firstly I want to thank everyone for this amazing network. I was diagnosed in early August with what they first though was a very small malignant lump in my right breast. After a lumpectomy the lump ended up being 38mm but margins are clear and pathology is +ve ER and PR. HER 2 appears to be marginal and after 2-3 tests by different pathologists they think that there are some cells that are HER 2 +ve and some that are not. The frustrating thing is- during first surgery they could not find any sentinel nodes- the radioactive trace went no where and what the surgeon thought was a node in my axillar was actually an extra nodal mass. I then had CTs and Bone scan which were clear thank goodness. I then went Back to surgery for a ALND and again first path test has found no nodes BUT the tissue that was removed does show cancer spread to axillar tissue- all HER2 +ve. Surgeon has said I am the first that she has seen with this result, and she has been doing breast surgery for 30 years and is well respected in Geelong. I see my med oncologist on Wednesday. Surgeon is treating it as node positive but cannot establish how many nodes!!! has anyone heard of this before? Does anyone know what treatment they are likely to suggest when they can't do pathology on nodes?? thanks

Comments

  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,592
    Don't you just love being special, not. Not just run of the mill but a perplexing one at that. Imagine they will do chemo anyway, just to be sure its killed off. Hugz <3
  • primekprimek Broken HillMember Posts: 3,183
    I would imagine that they will treat you as an estrogen and her2 postive patient with lymph nodes...since it is unclear. So my best guess is they will offer you ACT-H chemo and radiotherapy to the area and axilla...to be sure...to be sure (said in Irish accent) However it is only your oncologist who will decide and your case will be discussed within your treating team and they will have all the information and make recommendations based on that. Hang in there.  Your plan will be set soon. Kath x
  • acac Member Posts: 8
    Hi thanks for your responses. Given no one else has indicated they've had or heard of results such as these I will assume I am "very" special. Thanks for the advice re likely treatment Kath-that has helped me prepare for meeting with med onc Wednesday. I am determined to stay strong and positive so will deal with whatever they say will give me the best chance to grow old with my family. Take care all. x
  • Ann-Marie_BCNAAnn-Marie_BCNA Administrator Posts: 1,157
    Hi @Bellablor @KatyJoy @Tracey_B are you able to help @ac out?
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 122
    Hi @ac, I do know one thing for sure, it does feel better when you have a plan and you can start doing something productive to banish the beast. We are all so different, so our treatment is different, but your treatment team will make the best decision for your particular situation. All the best for Wednesday and keep us posted with how you go. We are all here for help and support whenever you need it
  • acac Member Posts: 8

    Hi again,

    well I have seen oncologist today and now have a plan so although scary at least I Know what needs to be done to beat this.

    She believes the cancer has overtaken the lymph nodes in my axillar and that's why they are unrecognisable. The tumour in my axillar is a grade 3 triple positive whereas the tumour they removed from my right breast was Grade 2 hormone positive and marginal HER2 +ve. Oncologist was very positive and helpful which was great

    Treatment recommended - 3mths epirubicin every 3 weeks(with an overnight hospital stay to manage nausea), then start Herceptin for 12 months(every 3 weeks) and Taxol for 3 months (weekly). After the Taxol and Epirubicin they plan 5 weeks of daily radiation to right breast, axillar and lymph nodes near clavicle.

    Any information/advice on what to expect with this treatment regime and how to prepare would be great.

    Thanks AC

  • KatyJoyKatyJoy Rowville victoriaMember Posts: 122
    Hi ac, great you have a plan and onc was so positive. Some find chemo harder than others so try not to stress to much, be kind to yourself, and tell your treatment team of any symptoms when they occur, they can usually be managed very well. I had a different chemo regime to you but I did have the 25 radiotherapy fractions to the same area you describe. I was able to call the nurse at any time if I had questions and the staff kept a very close eye on my skin. For me radiotherapy was easier than chemo but see how you feel. Just take it day by day, see how you feel and ask for help if you need it. You will come up with lots of questions as you process this and we are always here to help so well done for reaching out! So many of us have been where you are, or are even going through the same or similar things with you. With all my treatments, it helped me to think that the benefits always outweigh the risks or they wouldn't do it. Best wishes to you, Kate
  • acac Member Posts: 8

    Hi Kate, thank so much for responding. It is definitely very helpful and reassuring to have this forum to hear from those who have "been there and done that" and also those who have are travelling alongside.

    I will take your advice and be kind to myself and I definitely know the benefits outweigh the challenges.

    thanks again x

  • primekprimek Broken HillMember Posts: 3,183
    Great to have a plan. Hopefully they have given you an information sheet on side effects, if not they will. Everyone varies a lot. Some find it really hard and others breeze through. We just don't know which one we will be until we start. We are here to help as needed. Take care. Kath.
  • acac Member Posts: 8
    Thanks Kath. Will take the advice and take each day as it comes. X
  • Tracey_BTracey_B Orbost, VictoriaMember Posts: 1,178
    Hi Kate, good grief ! That really sucks.......sometimes we all confuse science. Sounds like you are in good hands. Sending you a cyber cuddle xxx Keep checking in with us .......I hope hat we can support you along the way xxx
  • acac Member Posts: 8
    Hi all, well it has been 3 months today since my diagnosis. Over this time I have had two surgeries (lumpectomy and ALND) and 3 rounds of EC. All in all I have managed ok but I am still confused and a little concerned about my pathology (ie no lymph nodes found in tissue taken from axilla- but stage 3 cancer found)I have spoken to oncologist, BCNA nurse and others and no one has seen it before. I just thought I would try again and see if anyone on this forum has this pathology or knows anyone that has. I guess I am just a little anxious to make sure the treatment plan is right and some info about prognosis would be good. Oncologist just says focus on fact that all cancer has been removed and chemo/radio etc will mop up any microscopic cells..... Any info would be great (also sorry about the typo in the title- I don't know how to fix it). thanks
  • UnicornkissesUnicornkisses Central CoastMember Posts: 362
    Hi ac, I can't help you with the no node problem. So sorry there.
    But with regard to treatment, what your Oncologist says sounds right to me and was what I was told too. 
    I had lumpectomy with no clear margins and 1 sentinel node positive. There were cancer foci all through the two tissue areas removed (I had 2 lumps in different quadrants) so, like you, it was not confined to the lumps.
    I was sent straight to chemo to deal with any cancer cells that might still remain in the breast tissue, followed by a mastectomy and lymph node clearance. The mastectomy showed that there had been cancer cells left behind in the lumpectomy. (But the remaining 20 lymphnodes were clear)
    I was sent for radiation of the whole right side, nodes under my clavicle, in my neck near the thyroid and under the breastbone. 
    This is supposed to make sure that everything has been covered.

    There are graphs showing the stages of breast cancer with the relevant risks of recurrence if you want to google them.
    I wasn't really sure I wanted to know, but the Oncologist ran through it with me anyway.
    I am tentatively classed as stage 2B, and the graph showed a 21% chance of recurrence. So that means 79% chance it won't come back.
    My radiation Oncologist told me that radiation would reduce my chance of recurrence to about 10%

    I guess I have to be content with that.
    Do any of us really know whether the treatment has worked? 
    I asked my Oncologist and he said he just did everything he could and that we just had to hope, with ER +ve cancer there is never a 0 chance of it coming back.
    But the Aromatase Inhibitors are supposed to be the next line of deference in preventing it.

    I am ER+ve, PR+ve, HER -ve, but the first test came back equivocal (borderline) pathology from the mastectomy confirmed -ve though.
    So I go onto Aromatase Inhibitors.

    Your Oncologist can run through the graph with you if you want, or your Radiation Oncologist.

    Maybe after you have finished your treatment you can go to the lymphodema clinic at your hospital and ask about your lack of nodes there. I understand there are people who are born with malformed lymph systems, and that even normal can vary greatly in number in different people.


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