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Jan 5, 2020 02:11PM
Hi all, saw this thread and feel like I need to add my story. I started a dry cough in August (not productive). It was annoying, not deep but annoying. It was worse when I would lay down to sleep so I slept propped up. I added a sinus headache and a few other symptoms and was told I had a virus. Saw an ENT, agreed virus, called my Oncology office and they told me this was a matter for my General Practitioner. The cough really sounded like reflux which my mom has had for years with no heartburn so I started taking prilosec. Came down with laryngitis in Sept. GP still says virus. After 2 weeks gave me asthma med singular for "reactive airway disorder". Didn't help. Have mammogram and annual check up at Cancer Ctr on 10/2. Beautifully clear mammogram. Onc. PA agrees with GP I have a virus although I am insistent and concerned it is something more and I haven't been able to take a deep breath for a couple of months although my lungs are clear and my pulse oxygen great (blood work also perfect but it always has been).
Cut to the chase, saw a new ENT, have a paralyzed vocal cord, ordered CT and its due to seriously swollen lymph nodes in my superclavical area - also have huge cluster of lymph nodes in my chest putting pressure on my wind pipe. Had a chest xray, all clear.
I wish I had had a neck CT earlier ! My swollen lymph nodes are deep and under bone so not very detectable or obvious by touch. I had seen 5 doctors and a couple more than once and no one picked this up although they all felt my neck for lymph nodes, listened to my lungs and did the normal vitals checks. I was stage 1 in 2008, no lymph node activity at that time and my risk for recurrence considered to be low after treatment (incl. years of femara).
My good news is that it hasn't seemed to spread to bones or organs. Fulvetrant gave me almost immediate relief to my wind pipe pressure and I can sleep fine. Voice is still "not normal" but slowly getting better - may not ever go back to what it was but time will tell.
I am a great advocate for myself but can't believe how long it took for me to get answers. My oncologist retired 5 years ago and I was put in to a "Wellness Clinic" at that time (due to my low risk of recurrence) but I go to a top rated NCI . I told my GP (also new to me bc my previous GP retired) that I had breast cancer in 2008 and am very concerned and she was very dismissive.
Please get a neck CT! Most likely it will be clear but if not, you can start treatment.
recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass
11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-