After a year...There’s More

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Faith123
Faith123 Member Posts: 41
edited September 2021 in Stage IV/Metastatic Breast Cancer ONLY

Hello Everyone,

After a year of being NED,my last Pet Scan shows “something” in the nodes at the back of my neck .So I’ll be seeing an ENT and doing a scope so that can biopsy that area.


Please could someone explain to me which nodes are these? And if anyone has had a similar metastasis please could you let me know what your symptoms are/were and the treatment.

Once again the future seem uncertain and I’m very scared.

My Symptoms:

Light frequent cough

Tinnitus

Hoarse throat

Voice sort of going but now it’s back


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2021

    Faith,

    I had these exact same symptoms! I answered your PM. the Tinnitus in my left ear was my first symptom and it is still with me but the rest have resolved with treatment.

    Edited to add that in my case the left superclavical lymph node was enlarged, paralyzing my left laryngeal nerve. I think that also put some kind of pressure on something with my left ear as Tinnitus, left ear only was my first symptom along with some significant sinus pressure when I was lying down (sleeping). It would wake me up and was excruciatingly painful but would eventually go away as long as I didn't lie down. I had other nodes in my chest enlarged and take up FDG so had cancer in them. I had a slight cough as well and after the cancer recurrence was discovered, I was told the mediastinal nodes were pressing on my windpipe which led to the shallow cough. Pulse oxygen was always good and my lungs were clear. Within a week of starting fulvestrant, the pressure feeling on my windpipe went away and so did the cough. I could finally sleep lying down without issue. Voice eventually came back and my left laryngeal nerve was completely paralyzed for over 6 months.

    I am her2- but Ibrance and Fulvestrant have worked well for me so far. No evidence of active disease in my last 3 quarterly petscans.
    Hang in there and let us know how your biopsy goes,etc.

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  • moth
    moth Member Posts: 4,800
    edited January 2021

    there is another set of lymph nodes, close to spine. They're sometimes called posterior cervical nodes or spinal accessory

    best wishes OP. Hope it's something unrelated to cancer

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  • Faith123
    Faith123 Member Posts: 41
    edited January 2021

    Thank you sooo much AprilGirl and Moth🙏🏿

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  • marlie67
    marlie67 Member Posts: 17
    edited September 2021

    Hi I am waiting on a biopsy for lymph nodes that light up on pet scan. Mediastinal and supraclavicular plus I have 3 nodes in my lung. My question is what can I do in the meantime for pain? Yesterday I feel like breathing in is hurting my chest and making me cough. It's like a pressure. I don't think the hospital will do anything for me right now. I still have another week and a day before I see the pulmonary Dr. I am afraid I am dying before I can get treated. It's in my ribs and spine too.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2021

    marlie,

    Your diagnosis line is not public so it’s difficult to know the particulars of your bc. That aside if you are having trouble breathing, please contact your doctor ASAP rather than ask us, non-medical professionals. If you are at a point where you are truly afraid you are dying, call 911! I understand that many hospitals are overwhelmed right now but please call you doctor or go to the ER if you are having that much pain and breathing difficulties. Take care

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