Freaking out it is spreading to my lymph nodes

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AliCat47
AliCat47 Member Posts: 8
edited June 2018 in Just Diagnosed

I was diagnosed April 2 with invasive breast cancer in my left breast. Tumor measuring 3.6 cm. I had both an ultrasound and MRI two weeks ago and both said my lymph nodes were clear at that time. I might mention that I never felt the lump at all till after the biopsy and getting poked and squeezed every few days after. Since then I have a lot of twinges in the tumor area. Two weeks ago I had an ultrasound and MRI, both showing my underarm lymph nodes to be clear. Today I have twinging under my arm in one certain spot....in the fatty tissue in front of my arm, above the breast. My surgery isn't until next week but I'm freaking out it's spreading to my lymph nodes while I wait for surgery. Is this a symptom of it spreading or am I just looking for something that isn't there? This wait it killing me!

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Comments

  • rdeesides
    rdeesides Member Posts: 459
    edited April 2018

    There is no way to know for sure until they do surgery. I was just like you and kept feeling twinges under my arm and was freaking out, but when they did surgery, no nodes tested positive. Hang in there

  • AliCat47
    AliCat47 Member Posts: 8
    edited April 2018

    Thanks for the reply. That is reassuring. I can’t believe they make people wait 3 weeks for surgery and another 3 weeks for OncoDx results. I feel like I’m going crazy!!

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2018

    I think it is unlikely that your lymph nodes are involved, given you've had not one, but two sets of imaging in the last 2 weeks. Of course, the only way to know for sure is to get the sentinel node biopsy. However, just understand that a body and mind under stress can make us feel all kinds of zaps and pains. "Bad feelings" are not facts, so try not to waste your life force grieving something that has not happened and may never happen. Keep yourself busy with things that require concentration--nothing too Zen; you don't want to allow your mind to drift too much, cuz you know it will go "there."

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    I do believe that what you're experiencing right now is part of our deep "survival" instinct. You've just been given some potential life-threatening news. You are now hyper-aware (more than you ever would be before) of any little twinge or ache or any blip in your body right now, because of the fear and need to survive. We overcompensate other than ignore to be on the safe side. If your scans show no lymph node involvement, then believe it. And the next appt, bring it up with your doctor so they can explain and reassure you.

    Claire in AZ

  • AliCat47
    AliCat47 Member Posts: 8
    edited April 2018

    Thank you so much for reassurance and kind words. I see the surgeon on Wednesday so I will definitely bring it up. Thanks again

  • ksusan
    ksusan Member Posts: 4,505
    edited May 2018

    Really unlikely. That would be astonishingly rapid. You're probably hypervigilant and sensitized to any sensations in those parts of your body right now.

  • Falconer
    Falconer Member Posts: 1,192
    edited May 2018

    imageOur BC.org friend Wallan shared this last year. Perhaps it will be helpful. It was for me, as I was panicking about this dx

  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2018

    This is so hard-- it is so unlikely, given all of your imaging, that anything has spread but it is so hard to wait-- 3 weeks is not that long in the bc world, but in our own minds, it is eternity...... hang in there....


  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2018

    Falconer, that's excellent. It should be required reading for every person joining this site.

  • UncommonPink
    UncommonPink Member Posts: 1
    edited May 2018

    I'm nervous too. I am having surgery next Wednesday. They are also doing the sentinel lymph node thing too. Has anyone here had any drama related to family freaking out about your having a mastectomy?


  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2018

    I didn't really experience much family freak-out, but my brother drunk-called me several times over the course of three weeks, crying, begging me not to die <insert eyeroll here> And my mom told me the stories of all her friends who had BC and all the stories ended with "...and SHE DIED!" I kept my surgical plans under wraps until the deed was done.

  • Brennalynn
    Brennalynn Member Posts: 9
    edited May 2018

    Waiting is the worst! I too am newly diagnosed. I was very fortunate to have the surgery pretty quick. Waiting for pathology results almost drove me insane. Now I’m waiting results of Oncotype tests. I’m an anxious person and not very good at waiting for sure

  • Egads007
    Egads007 Member Posts: 1,603
    edited May 2018

    Mustlovepoodles, I had a friend that told me the ‘AND THEY DIED!!!’ stories every time we met. I’m not a violent person but man did she test me! You would think you wouldn’t have to explain to people that it’s the last thing they should be relaying! As many have said here, ya can’t fix stupid

  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited May 2018

    It's normal to feel twinges in the breast after a biopsy. A nurse at the cancer center told me that -- he said it's the nerves regenerating. I felt twinges for several weeks after my biopsy.

  • AliCat47
    AliCat47 Member Posts: 8
    edited May 2018

    Brenalynne- how did your lymph nodes look? I too will have to wait for the Onco test results. Wonder if anyone ever gets put on anxiety meds through their journey? I'm so tempted to call my doctor and ask for something. Just to get me through this cancer s**t. I've never been one to take stress well in the first place.

  • Falconer
    Falconer Member Posts: 1,192
    edited May 2018
    Yes, Ali, lots of people take anxiety meds. Ask your doctor.
  • Sophiemara
    Sophiemara Member Posts: 66
    edited May 2018

    Hey, it's easy to think the worst and of course human instinct, but it's very unlikely to have spread in a 2 week period. There's the misconception that breast cancer spreads very very quickly, but my onco has said it grows a lot slower than people think, regardless of the grade. Often it takes a good 5-8 years for a few cancer cells to form into a lump.

    The fact that your MRI (highly regarded technology for cancer detection) is clear is great news. When you're in that limbo waiting period it's so easy for the mind to wander and for negative thoughts to set in, I also felt the same and sometimes the body can be sympathic to the mind and develop symptoms/pain and of course the pain can feel very real. But logically speaking have faith that it is highly unlikely based on the scientific evidence and with your op not too far away. Good luck.

  • Macushla
    Macushla Member Posts: 8
    edited May 2018

    I was also basically cleared through ultrasound and MRI as to node involvement. I am three weeks post surgery , and in the sentinal node biopsy they found two micro-metasteses. Not enough to even count in my "staging" apparently, as I am at T2,N0,M0. However, after my earlier needle biopsy I had the same thing: phantom pains when before there were none, started to be able to feel something else, twinges. My nurse navigator and team said it is perfectly normal as all of the sudden we're being palpated and biopsied and smushed around, and she told me not to worry - a lot of that is the lymph system doing what it's supposed to, going to the site and making sure everything is ok, but that things simply do not spread that quickly in a matter of days or a week or two and to go from a presumed clear on an MRI to full blown involvemnt and spread within two weeks is not going to happen.

    It IS scary though, as now you're hypersensitive to every twinge. I understand exactly what you are feeling, as I just went through it myself. Somehow the idea that it is the kymph sytem doing what it is supposed to - that's what made sense and helped calm me down. I hope it helps you in some way as well <3

    BTW, if it was you or an earlier poster - I too asked for a something to take th eedge off my anxiety and they gave me a small dose, 1mg (which I broke in half!) , 20 pills only, of Xanax. It helped tremendously to block out the white noise and rising panic for those times we really need to be calm and clear. I've only used it once, but knowing I have it in case, is itself a great help.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2018

    Anxiety meds? I'll bet we here at BCO collectively have enough Xanax and Ativan to open our own pharmacy. By all means, take them if they will help you get through this. I'm all for guided imagery, meditation, crystals and other woo-woo, but I didnt have the patience or self-control to overcome the crushing anxiety that I experienced.

  • Trvler
    Trvler Member Posts: 3,159
    edited May 2018

    Agree that it's unlikely to have spread to your lymph nodes that quickly.


    Also, I took .5 mg of Xanax for the entire treatment and eventually got off it. The hormone blockers give me insomnia so I started taking it again to sleep. Now I take .25 a night and don't sleep all that great. But it is hard to get off so be careful with it. My doctor gave me trazadone to try and I had a horrible reaction so one pill and I quit. It laid me out (not a good sleep way) for 3 days. I had every side effect there was.

    Just saying be very cautious with the xanax.

  • Nurselola1973
    Nurselola1973 Member Posts: 21
    edited May 2018

    I feel your pain! Diagnosed April 20th and my ultrasound and MRI showed clear nodes as well. However they have to biopsy the node cause cancer is microscopic. My surgeon says unlikely to be in the nodes but won’t know until I wake up from lumpectomy in May 15th!

    Waiting is torture and I take Xanax 1 mg at night and sometimes I’ll take 0.5 during the day if needed.

    💗

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited May 2018

    Drugs, definitely anti anxiety meds. For getting through surgery, treatment and anti hormonals. A little bit can help so much.

  • Jenny004s
    Jenny004s Member Posts: 1
    edited May 2018

    I have just been diagnosed today and I am terrified. I’m now thinking it must have been there for a bit because it feels large to me. My doctor was as good as useless. Couldn’t tell me anything. Just told me to wait until I speak to the surgeon. Suddenly everything that has been wrong with me in the last 12 months is magnified. I’m concerned that I am riddled with it. The brain can be awful thing.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited May 2018

    Jenny and all, I'm just chiming in to agree with what's been said about ways to manage stress during this crazy BC ride. You might want to call your radiology center and demand copies of your mammogram and ultrasound reports. Knowledge is power! And for me it helped with the anxiety of "what if" to know what I was dealing with and have good questions to ask the doctors.

    I also advise chocolate and new shoes. ;)

  • Proud_Patriot
    Proud_Patriot Member Posts: 27
    edited May 2018

    @mustlovepoodles:

    I would like to counteract the AND SHE DIED stories with some positive ones:

    My co worker just celebrated the 20th anniversary of her diagnosis. She is currently 60 years old, working as a legal assistant and enjoying her adult children.

    My cousin's husband's mother has lived over 20 years after her diagnosis. I'm not sure how old she is now but her son is 55 so she is in her 70s and the last time I saw her she looked great. I never knew she had cancer until her son told me.

    A different co worker's mother had cancer at least 10 years ago. She is a teacher and is retiring and moving to FL from Chicago.


    Right now you need positive people in your life. Distance yourself from the negativity. Plenty of people live through cancer.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited May 2018

    Trvler- have you tried taking your AI in the morning rather than at night? That solved the insomnia for me.

  • bluepearl
    bluepearl Member Posts: 961
    edited May 2018

    I felt pain in my armpit from a small tumour but nodes were clear. It can be referred pain from biopsy or even the tumour pressing on a nerve. Not to worry. If the nodes are deemed clear, they are very likely clear.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2018

    Thanks, Patriot. I did have to change playgrounds and playmates for the duration of my cancer treatment. Ironically, my mother was diagnosed with renal cancer last spring...and she died.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2018

    Falconer, that was a great list. My daughter has medical anxiety, generally, and I copied and pasted it to send to her when she's hyper-worried about a perceived physical condition.

    My mom freaked out about my dx. She immediately called everyone in the family when she found out (she came to the waiting room for my lumpectomy saying she was going to "support my husband" who was also waiting, even though I asked her not to). I hadn't even fully waken up from anesthesia and she horned in on the news from the doc when he shared it with my husband. My daughter, my only child, who was traveling alone for work, found out through a random and unnecessary text she got from a much younger cousin, and I wasn't able to tell my daughter first (I knew how to relieve her fears and could have, had the family gossips not gotten to her first). I was angry about that for a long time.

    Claire in AZ

  • SerSeri22
    SerSeri22 Member Posts: 4
    edited May 2018

    I too was diagnosed on May 1st and had a lumpectomy today, gotta wait to see if it spread to lymph nodes...and my HER2 is dual equivocal, they just can't tell if its + or -

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