Swollen painful axillary lymph nodes under both arms

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Maggie66
Maggie66 Member Posts: 180
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

I developed them about a month ago and my doctor checked them out, gave me a pelvic exam (my abdomen was tender, too) and did some blood work. All seemed okay ... and we didn't do imaging or a biopsy ... but the lymph nodes under both arms are swollen again and more painful this time. I don't feel sick at all, except that now I'm worried and increasingly anxious. I have calls in and assume I will go in for tests this week. What should I be asking or advocating for? What helps you relax while you are waiting? I do remember that waiting was the worst part before. I'm almost five years out with double mastectomies, extensive DCIS, no prior lymph involvement. Any advice? Would so appreciate any words of wisdom. Thanks so much, Maggie

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  • J9W
    J9W Member Posts: 395
    edited February 2014

    Hi Maggie66, I have no words or wisdom for you - just sending cyber hugs.  Here's hoping you just have a regular old infection of some sort. J9

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  • bevin
    bevin Member Posts: 1,902
    edited February 2014

    HI maggie, I have never experienced this, but pray you have clear scans and that none of this is due to cancer. I do think you should advocate for yourself and ensure you tell your doctor of all pain and any ache associated with this lymph node flare. Hopefully they can perform an ultrasound and that is without radiation but still very telling as I understand for lymph node review.  Others will be along soon to chime in who may have other thoughts and information for you. Keep us posted.

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  • DianeKS
    DianeKS Member Posts: 241
    edited February 2014

    Hi Maggie,

    If you are trying to rule out cancer and put your mind at ease a biopsy would be best.  An ultrasound would tell you how many are swollen, but not what it is from.  A CT scan would further tell you if there are any other lymph nodes swollen in that area...ie supra- clavicular ones( above the clavicle-- you can sometimes feel these), chest and abdomen.  A CT scan of chest abdomen and pelvis is common when concerns of metastatic disease is what you are trying to rule out. Bloodwork is not predictive in all cases and therefore unreliable for diagnostic purposes.

    My history is not the same as yours, but I did have a recurrence with swollen axillary lymph nodes and they can be very uncomfortable.  I could not stop checking them to see if they had changed....probably did not help.

    What helps me relax is any kind of mind numbing distraction.  A good movie, lunch dates, music(I like instrumentals when my mind is full of worry...piano [Chili Gonzales is great for me], basically anything you like), puzzles (recently I am hooked on Magic Puzzles a free game on my iPad that is addictive ...if you like puzzles that is), meditation.  You can get CD relaxation recordings from a library, perhaps the computer or ipod.  Nighttime is hard, exercise is good to help with that, perhaps a long walk with a good friend.  YouTube will numb your mind for hours...  I am especially partial to AFV reruns, Just for laughs- gags.

    Hope you get answers and can move forward with whatever it is...

    Gentle hugs,

    Diane.

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  • Maggie66
    Maggie66 Member Posts: 180
    edited February 2014

    Dear Diane, Bevin and J9 --

    Thanks so much for your kind replies. I feel pretty lost and just having you reach out makes a difference. I'm pretty out of touch with my former breast cancer community and I'm not up for sharing with family much yet. I know I don't feel strong enough to deal with other people's reactions, you know?

    I realized today that I need an oncologist. That might sound dumb and obvious -- right? But because I had DCIS, I only had a surgeon and my family practice doctor (and of course, lab people and the radiologist). When I left a message earlier this week about my month-long swollen nodes with my family practice clinic, the on-call doctor responded that I should use hot packs for pain and call if I had a fever. She clearly had no idea what my history was. Hard not to get angry. I feel pre-exhausted for the gearing up to self-advocate. I know I can do it and do it well, but I just don't want to. It's interesting that this time around, I just don't want to get on the testing merry-go-round. I know I can't stick my head in the sand and I will go to the appt with my family practice doctor tomorrow to discuss next steps, but I feel like a little kid in that, "If I don't know, then it doesn't really exist" frame of mind... To add to the mix, I had a skin cancer treatment last week. 

    Diane, thanks for the detailed screening information. It will help me have the conversation with my doctor tomorrow.

    I appreciate all of your sweet thoughts and kind words. You've already made a difference for me.

    Maggie

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  • TB90
    TB90 Member Posts: 992
    edited February 2014

    Hi Maggie:  You said swollen again.  Does that mean that they went away after being swollen the first time?  If so, not likely cancer as I do not believe they would go away if cancer was the factor.

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  • Maggie66
    Maggie66 Member Posts: 180
    edited February 2014

    Thanks again to everyone! The chest x-ray and all blood work were clean and clear, so I am breathing easier. There doesn't seem to be any inflammation indicated in my blood work, so it's still a mystery about the very swollen nodes. I'm going to find an oncologist and continue the conversation, although in a far more relaxed manner. Thought I'd also take the opportunity to decide what's worth stress in the rest of my life, too. Spring cleaning on people, issues and tasks that unnecessarily bog me down. 

    Can't tell you how good it felt to reach out and have you respond. Thank you!

    Maggie

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