Enlarged mediastinal and hilar nodes

Granuaile
Granuaile Member Posts: 113
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Just had my three month follow up on 2 nodules in my lung - onc called me on Friday night (I put in a request for a callback for results) and says they're stable, seems unconcerned that they're malignant. However, three enlarged nodes were noted, 2 in the mediastinum, and 1 in the hilar region. I had proton radiation, with a lot of burned skin and discomfort, finished up Dec. 1. I've also had a cold the last couple of weeks. Onc seems fairly sure the enlarged nodes are related to that treatment. He didn't bring up the topic of regional recurrance at all, just said I should do a follow up scan at the end of April. 

 I was shocked that there were any findings at all. I'm still on Herceptin, and also Tamoxifen. From what I'm reading, lots of things can cause enlarged nodes. I really need feedback - I was really scared yesterday. Don't you think he would have ordered additional tests if he suspected recurrance? He's a top onc at Mass General in Boston. 

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Comments

  • sweetbean
    sweetbean Member Posts: 1,931
    edited January 2012

    Yes, when they suspect mets, they order tests right away.  This isn't like if you are breastfeeding mother and you find a lump and they ignore you for 8 months.  Once you have cancer, they pretty much jump on everything.  If he says he isn't worried, there is nothing for him to worry about. 

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  • Granuaile
    Granuaile Member Posts: 113
    edited January 2012

    Thanks, Sweetbean. He's a pretty conservative guy, so I imagine if he suspected a recurrence, he'd have me in right away for more tests. I'm seeing the RO for a two month follow up on Friday, so I'll be sure to ask her a lot of questions. It's hard not to feel terrified, though. More lorazepam, I guess...

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited January 2012

    I have a 4mm lung nodule that was there when I was diagnosed and hasn't budged since then.  They have never thought it was BC and said so.   I really think if your onc thought there was even a chance it was mets, he would get you in for tests.

    Do you meditate or do guided imagery?  I like Belleruth Naparstak's stuff -you can get in on iTunes.  She has stuff for fighting cancer, dealing with worry, stress.  Good stuff! 

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  • Granuaile
    Granuaile Member Posts: 113
    edited January 2012

    Yeah, me too. Two nodules that were there at diagnosis - onc explained everyone has some, and they were noted as "unremarkable" in the report. I'm just hoping the nodes are enlarged because they're doing their job dealing with infections in my body.

     Thanks so much for your comments. It feels weird to be living in a normal world and have so many fears for my life!!!!! Especially after being so healthy for so long.

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  • Granuaile
    Granuaile Member Posts: 113
    edited January 2012

    Ok, did my 24 hours of research and then called MGH back, asking for someone to go over the report with me. I got a call back within 2 hours! Apparently any changes at all are noted on scans, whether or not they are significant. She suspected the enlarged lymph nodes were the result of an infection/virus. If they suspected mets, I'd be dragged in right away. Everything we thought, Sweetbean, so thanks for the emotional support!!! And common sense!

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  • Granuaile
    Granuaile Member Posts: 113
    edited January 2012

    Just saw my radiation onc. today, for my 8 week followup after rads. Good news: heart looks amazing. More worrisome - she said the enlarged nodes could be inflammation or cancer. If cancer, why wait 3 months to scan, I asked. If I have mets, shouldn't they be treated sooner rather than later. And as for the anxierty of waiting for results....don't know what to tell you about about that, that you don't already know! So I'm being scanned in 6 weeks, and she'll let me know the results that night. I have to admit. I'm scared. I can't believe I've gone through all this treatment (A/C, Taxol/Herceptin, Tamoxifen, mastectomy, lymph node dissection) and I still may have mets before my year cancerversary, and while I'm still in treatment!!!!!! I know, I know, I'm getting ahead of myself. Please feel free to talk me down...

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  • Granuaile
    Granuaile Member Posts: 113
    edited March 2012

    Just wanted to update you. Had my follow up scan the day before yesterday, and the radiation onc. called yesterday. She was happy to report that my nodes have downsized and that the lung issues look more like infection instead of lymphangitic spread of cancer. I'll speak to my mo today. I'm so relieved. 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited March 2012

    Granuaile, what wonderful news!

    Congratulations!

    Leah

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  • Granuaile
    Granuaile Member Posts: 113
    edited March 2012

    Thanks, Leah! I've been overstressed these last weeks, trying to accept the fact that the cancer might have metastasized! That's not to say it won't come back, I just didn't think I'd be facing it so soon...

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