Enlarged nodes in neck

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RatherBeGardening
RatherBeGardening Member Posts: 8
edited October 2015 in Not Diagnosed With a Recurrence or Metastases but Concerned

I found enlarged lymph nodes in my neck about 2 months ago. The ultrasound showed hypoechoic but otherwise unremarkable, 1.4cm x .4 cm. The surgeon feels they are soft (they felt hard to me but trusting he knows). They are not able to biopsy as they are too close to nerves. So the approach is to wait and see for three months. They do not seem too concerned. I also have a slightly lowWBC with normal differential.

I was so convinced this was the other shoe dropping that I'm having trouble accepting that things are probably okay. Anybody have something similar?

Not sure if this will include my history at the bottom so just in case, here's the summary: stage III with 7/16 positive axillary lymph nodes, diagnosed 2012.

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  • bevin
    bevin Member Posts: 1,902
    edited June 2015

    Hi there Rather be Gardening; Not to cause worry, but as I understand, with the low WBC and enlarged nodes, that are softer, I'd ask your care team to rule out any lymphoma. According to my my Moms MO, lymphomas can have softer enlarged nodes and of course low wbc. Worth a discussion to ensure they're considering everything.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Hi RatherBeGardening. Welcome to Breastcancer.org. We're so sorry for what brings you here, but we're so glad you've joined us and decided to post.

    We know that it is scary and the waiting is hard, but at least it's a good sign that they don't seem to be concerned. Please let us know how you're doing. We're all here for you!

    The Mods

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  • inks
    inks Member Posts: 746
    edited June 2015

    Keep an eye on those nodes, it's great that you got the ultrasound. I had nodes on my neck that could be felt and I went to 3 of my doctors - surgeon, radiologist and PCP, no one was concerned. It turned out I had a rash on my head from scratching, I used steroid liquid and once the rash was gone the palpable nodes went away. I hope you find out soon what is up with your nodes.

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  • RatherBeGardening
    RatherBeGardening Member Posts: 8
    edited June 2015

    Thanks Bevin. Yes, lymphoma is a concern and I didn't realize that the nodes could be softer with that. I'm not sure what they can do except what they're doing, since they can't biopsy the nodes. They certainly told me to contact them if I had any new symptoms. They mentioned night sweats a few times which I have but I've been calling them hot flashes and I've had them since I started tamoxifen. Thanks for posting.

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  • RatherBeGardening
    RatherBeGardening Member Posts: 8
    edited June 2015

    Thanks inks. I'm glad your nodes turned out to be nothing of concern. Fingers crossed that mine are the same.

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  • RatherBeGardening
    RatherBeGardening Member Posts: 8
    edited June 2015

    Thanks The Mods. This is such a great site when you're worried and need someone who gets it.

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  • RatherBeGardening
    RatherBeGardening Member Posts: 8
    edited June 2015

    yes, thanks kayb. They mentioned that as well but DrGoogle said otherwise. :)

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  • theresa45
    theresa45 Member Posts: 314
    edited June 2015

    I am right there with you, RatherBeGardening! I have 3 enlarged lymph nodes in my neck that are being monitored. The nodes are only on my left side, unfortunately my cancer side. They are higher in my neck, so my BS thinks they are cervical nodes. I have had a slight sore throat, but the nodes are only on my left side. I've been taking tamoxifen for 5 years. I've heard that tamoxifen can cause "silent reflux" which may be causing my lingering sore throat. My surgeon plans on biopsying the nodes if they don't shrink in the next couple of months. I am also due to see my oncologist and have a full blood panel run. My surgeon also mentioned the possibility of lymphoma. I hate breast cancer scares!

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  • RatherBeGardening
    RatherBeGardening Member Posts: 8
    edited June 2015

    Hi Theresa45. Sounds like we're in the same boat all right. Let's stay in touch. Hope all turns out okay for you.

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  • theresa45
    theresa45 Member Posts: 314
    edited June 2015

    I added this thread to my favorites. I'd like to keep in touch with you as we go through this process. I hope all turns out well for us both!! The wait and see game is not fun. My surgeon says that we need to leave the nodes alone; touching them can keep them inflamed.


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  • RatherBeGardening
    RatherBeGardening Member Posts: 8
    edited September 2015

    I go for my 3 month checkup tomorrow for the enlarged nodes in my neck. I think the node is about the same, but there might be another one. Also I have a rash on my shoulders that I hope is nothing. ;( Always such a nightmare to go to these appointments. I'll report back. Wish me luck.

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  • theresa45
    theresa45 Member Posts: 314
    edited September 2015

    Hi RatherBeGardening, A lot has happened, since I've been on this thread. After 15 months of watching the nodes in my neck, I insisted on a biopsy. My breast surgeon did not want to biopsy the nodes, so agreed to a PET/CT scan. It showed likely cancer in my mediastinal nodes, cervical (neck) nodes and axillary nodes. The surgeon removed 4 of the neck nodes and they were overflowing with breast cancer cells. In June 2014 the first neck node appeared. It was kind of like a hard peanut. Over the next 15 months the surgeon insisted that it could not be breast cancer because the original node was small (7mm) and did not increase in size. When more nodes showed up in June 2015, Dr Dunn still insisted it was not cancer. I don't want to scare you, but I want to encourage you to push for a biopsy or scan to rule out breast cancer. Hugs and best wishes!

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  • sticec
    sticec Member Posts: 26
    edited October 2015

    Hello,

    I've been monitoring a lymph node above my collar bone on the left side (cancer side) for 3 months now. Had my annual oncologist appointment and he ordered a CT scan for October 8th of the chest, neck, and abdomen. Said he wasn't happy I waited 3 months and should have come in sooner. It's hard and about the size of a jelly bean. Trying not to think about it, but we all know how that goes!

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  • theresa45
    theresa45 Member Posts: 314
    edited October 2015

    Hi sticec, I'm very glad your oncologist is being proactive with ordering the CT scan! Did he mention why he is ordering a CT scan versus a PET/CT scan? Over the 15 months that my breast surgeon "monitored" my node, she suggested all sorts of things other than breast cancer that could have caused it. I pray that your node turns out to be caused by one of these benign causes!! Please let us know how it goes. Best wishes!!

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  • sticec
    sticec Member Posts: 26
    edited October 2015

    Hi theresa45 :) thank you for responding. I am not sure why no PET. My twin sister (who is a survivor as well) asked the same thing. I have never had a PET done. Not even at the start or finish of my treatments. He ordered it and said that if anything looked suspicious, we would go from there. I asked about just an ultrasound. He said he would rather do the CT with and without contrast due to all the positive nodes I had in my axillary and that the supraclavicular nodes, is the next stop. I would like to think I am as cool as a cucumber, but there is a little part of me that thinks about it.

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  • theresa45
    theresa45 Member Posts: 314
    edited October 2015

    Hi Sticec, My breast surgeon insisted on the PET/CT before cervical (neck) node dissection. My oncologist was worried that the nodes were small enough that they would not show up on the PET/CT. My nodes were "not pathologically enlarged by CT criteria", but showed "hypermetabolic activity" (ie, absorbed a lot of the contrast indicating cancer) in the PET scan. My surgeon monitored my nodes with ultrasound a few times over the 15 months, but that only gave us a size measurement. Even after the PET/CT, my surgeon and oncologist were saying that we could not yet be sure it was cancer. Apparently removing the nodes and having a pathologist look at them under a microscope is the only definitive confirmation of recurrent breast cancer. Again, I'm glad your oncologist is being proactive and investigating your node. Hopefully, you will be able to rule out breast cancer and move on with your life without that node hanging over your head!!! I truly hope that nothing I've said impacts your "cool as a cucumber" vibe. I hope the fact that you are doing EXACTLY the right thing in investigating the node, helps you to be at peace while you wait for the CT. Please let me know how it turns out. I look forward to sharing your happy dance when you rule out breast cancer!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2015

    I don't know if it's nodes, or what, but something is going on on my neck, mediastinum, and the back of my head, lumps that I can feel, and I have been having a constant head ache. I said the magic word "head", to my triage nurse at tx center, and am now set up with a brain ct scan for tuesday morning.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2015

    bumping for my friend

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