Help! Confusion in Diagnosis/Staging

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Pooki
Pooki Member Posts: 27
edited September 2018 in Just Diagnosed

I just turned 40 and had my routine mammogram done and they discovered a 1cm tumor in my right breast. They did a breast needle core biopsy, which came back positive for IDC, ER+/PR+, HER2-. Doctor ordered an MRI and three swollen lymph nodes were found in my right axilla. Went and did a needle core biopsy on one of the swollen lymph nodes last week, and the results came back as follows:

Review of the H&E section shows a core needle biopsy segment of blood clot, skeletal muscle, and fibrous tissue, the latter showing involvement by invasive ductal carcinoma.

ER+/PR+, HER2-

Right axilla, core biopsy: IDC, Intermediate grade, involving soft tissue.

Comment: No lymph node tissue is present.

My surgical oncologist is concerned about the "involvement of soft tissue" and there being "no lymph node tissue present" and has stopped talking about me getting a lumpectomy and wants to send me to a medical oncologist to start chemotherapy first.

Has anyone else had an lymph node biopsy with results like this?

When I first met w/ the doctor, she said that this was an early stage cancer, totally curable, and now she said best case scenario I am Stage IIA, worst case, Stage IV. I can't believe this....

She also ordered testing to see if I carried any breast cancer genes (Mom was diagnosed at 48) and that came back negative.

I am just a mess....I know not having answers in the beginning is normal, and part of the process...It's just been really hard emotionally.

Comments

  • bella2013
    bella2013 Member Posts: 489
    edited September 2018

    Pooki, hang in there. Someone will chime in soon

  • bella2013
    bella2013 Member Posts: 489
    edited September 2018

    Moderators, can you jump in and help Pooki? Isn’t there a radiologist on BCO that might help her understand her report?

    Thanks

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    Pooki - It sounds like they missed the lymph node, but I don't understand the pathology that is noted. Did you have an MRI? I did and it showed a hole right through the lymph node that was biopsied.

    My radiologist noted my results as "discordant" because he was sure that the lymph nodes would be positive for cancer. I had chemo before surgery so I'll never really know. I'd rather believe that it really was negative, of course.

    As scary as it sounds - I think that seeing an oncologist is a good idea. They may or may not recommend chemo - first or ever. But good to get their opinion on a plan of care.

    More info usually helps clarify to situation. Good luck.


  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Thanks Bella -- we'll try to help!

    Hi Pooki, and welcome to Breastcancer.org! We are so sorry you find yourself here, but really glad you found us. There are many members here full of knowledge, advice, and experience and always willing to support you.

    Unfortunately, however, we don't have a "resident" radiologist -- though member djmammo, a retired board-certified radiologist specializing in imaging, has volunteered to answer many members' imaging questions. Not sure if he will have any insight on this, but we can ask him to pop in and see if he can offer any advice.

    Hang in there pooki! We're all here for you!

    --The Mods

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Thank you, Bella!

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    That's what the report sounds like to me, too, NotVeryBrave! But I watched them on the screen during the ultrasound and I saw them pull the sample with the needle out of the lymph node and place the little marker in there. The comment on the report that says "No lymph node tissue is present" is baffling to me, to say the least!

    I did have an MRI done, which had showed 3 swollen lymph nodes. We thought it might be from the breast biopsy since I had two decent sized hematomas from that procedure, but the MRI results led my surgical oncologist to order an ultrasound and biopsy of my right axilla.


  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Thank you so much, Moderators! I'm so glad I found this community! I hope djmammo can help me understand this better!

  • djmammo
    djmammo Member Posts: 2,939
    edited September 2018

    Pooki

    Having read the path report, my best guess is that the target of the biopsy was in fact not a lymph node but was assumed to be because of its location in the axilla, and instead this may be the site of a second primary. Alternatively it could be a node completely replaced by tumor but I believe the pathologist would have seen some evidence that it was in fact a lymph node.

    An MRI would be the next step in imaging prior to any other treatment or intervention to see what's what in the axilla and beyond.

  • Rae7200
    Rae7200 Member Posts: 37
    edited September 2018

    Hi Pooki,

    Don't know if this will help. Here's my story. I recently had a recurrence after 3 yrs and 1 week. It showed up when I went for my annual diagnostic mammogram. They did the ultrasound guided biopsy, which really looked bad. We were pretty sure it was cancer even before we got the path report back. What we didn't know, and wouldn't know until the surgery, was whether it was a mass or a lymph node. It turned out to be lymph node — the cancer had completely replaced the lymph in the node. It was in the axilla. I had had a PET scan earlier, and also had an MRI


  • Sadlynew2018
    Sadlynew2018 Member Posts: 222
    edited September 2018

    pooki, just breathe for now. I was diagnosed less than a month ago. Things move so quick and an appointment with an onco can be so insightful. I am still in the diagnostic phase and really won't know my stage until next week. Someone told me on here and I'm determined to pass it on m because it's amazing advice - the diagnosis process is long. And it's agonizing. Probably going to be the most nerve wracking time of your life. But it will get more manageable the more you learn. I was told that and never believed it at first. But now I do. With other illnesses, you go to the doctor and they give you a diagnosis and it's over. With this beast, the diagnosis process takes several weeks sometimes. Keep this forum close when in pain or needing to vent. It was my lifeline over the last several weeks. Sending hugs your way. Just know that you have this forum to help and comfort you.

  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2018

    Sadlynew is right about the process. It’s grueling to say the least. I didn’t know what to expect either. All those stats and tests and treatments none of which were confirmed until after the Path report came back. Your medical team does their best I’m sure to prepare you but even they don’t know for sure until all the prelims are done. It’s definitely scary and frustrating.

    In my case my BS did a lumpectomy and was positive there was no lymph node involvement, however, when the Path report came back it showed a micromet in the SN. He was surprised. I was stunned. He said they had to dissect and redissect to find it but it was there just the same. He said it would get me chemo but my oncologist ordered the Oncotype test for me. My score came back at 11 so no chemo. The test is done to see if chemo would be beneficial. I was relieved I dodged chemo. By the way it’s the oncologist’s call not the BS. Also my BS staged me incorrectly. My oncologist said my stage was 1b. My BS staged me at 2a.

    It’s really hard to be patient given what the DX can be but once you know the stage and grade and treatments prescribed it usually moves quickly.

    Hang in there and keep us posted. I’m 7 years out this month.

    Diane

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    djmammo,

    Thank you so much for weighing in here! I saw my breast surgeon yesterday and we reviewed the all the images documenting the lymph node procedure and it revealed that it WAS in fact a lymph node!!! I am feeling so relieved right now! It's still scary, but far less scary than a second primary! I guess this kind of confusion can happen at times.


  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Hey Rae7200,

    I am sorry to hear about your reoccurrence and thank you so much for sharing your story! I am wondering if the spread they found in my lymph node is the same thing. It's scary how we can have all these tests done, then not too long done the road, something comes up like this!

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Hi Sadlynew2018,

    You are so right. This is a long, agonizing process! The not knowing what things mean, what is going to happen, etc. is enough to make anyone crazy. Thank you for the advice.....I know it will be easier said than done at times, and the fear of all the unknowns will take over if I let it. I am so glad I have found this community. It has helped me more than I can say!

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Hi Diane,

    Thank you for sharing your story with me! Congrats on being 7 years out this month! That is so awesome! :)

    Yes, this whole process has been very grueling - more than I thought it would be. I've always been super calm and collected and approached things logically, but this has really tested me!

    Even with getting some answers now, final pathology is still going to be king because they don't have all the answers yet.

    I'm glad you were able to dodge chemo. I'm sure that was quite a relief! Chemo is going to be an option for me, since they believe I have three lymph nodes that have the cancer. But both the breast surgeon and medical oncologist told me yesterday, that it is best for me to do chemo before surgery, since they would have to remove all the lymph nodes in my axilla if I did surgery first.

    So far I am considered to be Stage IIA. Up next will be a CT Scan, Bone Scan, EKG and Ultrasound of my Heart. And I know I will be on this board A LOT while waiting for the results!

  • Janemaria
    Janemaria Member Posts: 8
    edited September 2018

    Hi edwards750,

    The same thing happened with me.. after surgery bs said negative for nodes but when path came back it stated positive for micromestatatic.. not yet sure what that means, but I’m surprised he is not going back in to remove , he said that radiation will take care of it...I’m not sure at all and should I get a second opinion?

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited September 2018

    Janemaria. Go back to your surgical report and reade if, perhaps, the surgeon took 2 or three nodes. One node had a micro invasion, otherwise you wouldn't have a positive pathology..

    The surgeon removed it, even if he didn't realize that it contained some cancer cells. That's why he could say that radiation therapy would "get it". Get it = treat the area where the microinvasion was removed.

    Just keep your follow-up appointments and get your treatment plan written out by the radiation oncologist. The surgeon is finished.



  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited September 2018

    Pooki: I am sorry we are meeting this way. You can see that my surgery came first and I lost all the lymph nodes. One of my nodes was rather large, they were concerned. Different doctors have differing opinions about preserving lymph nodes.

    I agree it's going to feel like everything is in slow motion. Lots of tests. Rest when you can. Message me if you prefer longer chats here on breastcancer.org
  • windingshores
    windingshores Member Posts: 704
    edited September 2018

    I got a few Ativan pills from my doctor during the diagnostic period. I took walks, and watched a lot of Netflix. Tried to avoid research though the Mayo book on breast cancer gave me an overview. Research on specifics was only useful after diagnosis.

    We deserve sleep and help staying calm during this time. Honestly, the Ativan helped quite a bit. I only took a small amount of a pill, maybe once a day here and there but I knew it was there if anxiety rose.

  • Janemaria
    Janemaria Member Posts: 8
    edited September 2018

    mexicoheath.. Thanks for responding!! I will speak to him, he did sentinel mapping... I didn’t get a copy of the report yet but I will ask for one

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Hey MexicoHeather! Thank you so much for your response. Yes, we are definitely part of a club that no one wants to be a member of! Do you know how large some of your lymph nodes were? They found 3 swollen nodes on an MRI, one of them measuring 2cm....Bigger than the tumor found in my right breast (which was 1cm).

  • Pooki
    Pooki Member Posts: 27
    edited September 2018

    Hi windingshores,

    Thank you for your response and the advice. This is definitely the most stress I have felt in a long time. It can be consuming. My blood pressure has been scary high. My doc prescribed a small dose of Xanax, but I am trying to hang in there and use it as a last resort.

  • JoE777
    JoE777 Member Posts: 628
    edited September 2018

    one tablet a day won't hurt you and the anxiety relief will help the blood pressure. At least it did for me

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2018

    Dear Pooki--if we save Xanax (or Ativan or whatever) for a high stress time, THIS is it.

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