So, Do I Worry Now? I Need Your Help!

37antiques
37antiques Member Posts: 643
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

So maybe I live in a world of perpetual paranoia, but then again...

I have had a lump under my arm for a good long while now,  We tried the no shaving thing, the antibiotics just in case thing, and the mammogram thing. Along comes some spontaneous bloody discharge.   Then I went to the surgeon who said she didn't see anything she felt comfortable biopsying in the office, so how about another mammo and an U/S to boot.  Did she not see it or did she just not feel comfortable with it?  Things you think about afterwards...I heard the radiologist request more images because he just wasn't sure about an area, and then I immediately had the U/S but only under my arm on the lump. Why?  My hindsight in unfailing in it's perfection!  Went back to my primary who said it was a lymph node, but it has been swollen for a long time, and he keeps seeing cancer patients younger and younger...how about a stereotactic biopsy or maybe an MRI?  I opted for the biopsy, because for crying out loud lets get it out, but they couldn't get a clear view, so I had an MRI today.  In the meantime, I had a follow up with my breast surgeon who said, well, how about we test you for fibromyalgia?  I changed surgeons.

Am I crazy?  Or am I just in a wild doctor stew where one can see and the other is blind?  Or maybe there is nothing to see?  So I am waiting, but I forgot to ask for how long or who will get the results.  I have had a gazillion MRI's, but for some reason the one today made me feel really sick for the first time ever.  And my hubby couldn't go because he had to stay home and get the kids off the bus, so I forgot to ask when and who.  I suppose someone will call.

Anyway, I am tired, like really exhausted if I do something stupid, like, put the wash into the dryer.  Wash more than 10 dishes.  You know, hard physical labor.  Sometimes words don't come out of my mouth right, I skip a few, mumble, lose my place mid sentence. Sometimes my vision goes blurry.  And lots of pain, especially in my joints and back.  And a funny lump appeared on the left side of my neck, big, palpable, painless and not where one would think a lymph node is.  So what is this?   I run through every possibility in my head - brain mets, bone mets, recurrence....should I have been checked for fibromyalgia? In my joints?    What kind of crazy ride is this anyway?  Meanwhile, the hubby is crumpling inside with the dread of the unknown, and as for me, I don't do well til I know what I'm dealing with either.  So, to keep me from going crazy, give me suggestions, tell me what it sounds like...did you go through any of these symptoms?  Does it remind you of what you're husband's aunt's uncles's monkey's cousin once went through?  Something to research and learn, this is what I crave.  I do not feel well, so I'd like to attach whatever it is that makes me feel like this. But what is it???  And after all this back and forth lollygagging around, maybe I should just demand what I want to be tested for, but I know I need your input to go in the right direction.  Or maybe I should just hang out for a while, let it grow and develop into a fine speciman that the surgeon feels "comfortable" biopsying in the office.

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Comments

  • Gitane
    Gitane Member Posts: 1,885
    edited March 2011

    Holy Moly, Sue.  

    I have absolutely no knowledge to share that would help, unfortunately.  The stress you are experiencing is awful.  I know infections can cause swollen nodes, exhaustion, dizziness, and joint pain.  Has the GP done blood tests recently?  What about an MRI guided biopsy if the MRI shows something?  That might at least get you an answer on the under arm node.  If you've changed surgeons, the new surgeon should be able to help with getting a biopsy, hopefully.  I don't think you should wait until the doctor feels "comfortable" if you are in this much discomfort!   No, I don't think you are crazy, but the lack of diagnosis can certainly make you feel that way.

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  • flash
    flash Member Posts: 1,685
    edited March 2011

    Another possibility to think of:  you can have an abcess or infection in the entire lymph gland section and it causes exactly the type of symptoms you're experiencing. My sister just took 6 months to have it found out after many different visits including the er.  She ended up in the hospital for the last 3 weeks because of it. Not a fun stay but definitely better than a positive biopsy. So add it to the list of possibilties. I would continue to follow through with the doctor merry go round (NOT so merry)

    Hugs.

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited March 2011

    Sue,

    What deos a lump under ur arm have to do with fibromyalgia? Honey, if I were you I would make an appt with my onc. Even before I was stage 4, if  had symptoms they scanned with MRI or CT and got to the bottom of it. I had a droopy eyelid for 6 months and even tho scans showed nothing, they didnt ignore me. They think it was possibly a small stroke. I had dizziness b4 too but it was from inner ear. Either way I hope your MRI is clear but I hope they figure out whats going on. Obviously something is wrong. Hugs, Mazy

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited March 2011

    IT seems as if you are getting the run-around from all of your doctors who don't seem capable of dealing with your issues or taking responsibility for them.  I think you need to fire them all and find new doctors.  This doesn't sound right. It might not be mets but something serious is going on and I hope you get to the bottom of this soon.

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited March 2011

    Are you seeing a dedicated breast surgeon or a general surgeon?   If you aren't being seen at one already, maybe check for a cancer center associated with National Cancer Institute.  (Google NCI.gov and you'll find a clickable map to locate one near you.)  Someone needs to address all your concerns & get to bottom of it - a full workup -blood, biopsy if needed, referral to infectious disease specialist, or whatever.  Could be something totally unrelated to BC - a viral or bacterial infection or maybe something like mono.  Sounds like your lymph system is trying to fight something.  Good for you - keep demanding an answer.

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  • Anjanita
    Anjanita Member Posts: 252
    edited March 2011

    No advice here other than a few encouraging words about worrying.  It stresses you out and has never managed to accomplish change other than making a person feel tense and unhappy.

     I don't know if you are a spiritual person or not but here's a saying that helps me avoid floundering in fear:

    "If you worry, why pray

    And if you pray, why worry?"

    If you don't pray you can substitute the words "meditate" or "are doing everything you can to heal."

    Hugs, Anjanita

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  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2011

    Sue - The only thing I can offer is I had a lump appear on my neck that turned out to be fatty tissue. I recall it was soft. This happened several years ago so it is not related to my recently diagnosed BC at all. Just a thought. It is hard not to think the worst because all of us know once you have been Dx you are branded with the C word so every little ache and pain makes you anxious. Oh and the lump didnt hurt at all; in fact I didnt even notice it until a neighbor asked me what it was. You do have some other symptoms to deal with but that doesnt mean it is something dire. Again hard not to be scared but I would demand some dr do something...no sense you having anxiety attacks....diane

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  • 37antiques
    37antiques Member Posts: 643
    edited March 2011

    Thanks ladies, I'm so grateful for your thoughts.  And it's oddly encouraging to see that no one (so far) has said they had the same symptoms and it turned out to be some fatal thing. 

    I am all set to demand, but what?  If they keep poking at my breast and telling me there is just something questionable that needs another poke or pic, but then they don't know any more, well, how much more can I do the same or similar things and expect different results.  Could it be something else?  Should I have a pet scan?   Maybe it will really turn out to be my big toe or something equally unreasonable. 

    The new surgeon does only breast and thyroid, and has a great reputation for research.  I will definitely have her check for an abcess in my lymph system, and have her do bloodwork, it's been a month or so for that.  If you have any other ideas, feel free to add them to the list, it will be empowering to go to a doctor knowing what direction I want to go. All this running around the same track with no answer is really wearing me down.  Whatever it is, I just want to Know!

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  • D4Hope
    D4Hope Member Posts: 352
    edited March 2011

    cyber hg to you

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  • kaitsmom
    kaitsmom Member Posts: 291
    edited April 2011

    37antiques(Sue)  I have never been in this Topic, but I just noticed your post and had to comment even though your post is from last week or so. First let me wish you well and hope you find some answers.  It is frustrating not to know what is going on.  I can relate to what you are going through, and thus, my comment - 

    I could have written your whole paragraph starting with "Anyway, I am tired . . ."  I mean could have written the WHOLE thing, only difference is that my bump is on the right side of my neck.  Everything else in that paragraph- exactly the same.  What the heck?!  

    I have pain in my underarm as well, though I had a bilateral MX, so there is nothing to mammo.  The BS did an US and said she thinks it is muscular inflamation, and maybe some scar tissue attached to the implant.  I am not sure I believe it.  It is on my "good side" but that doesn't mean much.  She didn't think there was anything there that she could biopsy, and the implants are coming out next month when I have a DIEP done.  So in the meantime, I can sit here and wonder what the heck is going on. And worry. I am trying to not let my imagination run wild, but we all know what can happen . . .

    Lots of running around from Dr to Dr - thyroid checked, everything checked.  They questioned lupus, other autoimmune stuff. Now they said maybe fibro . . .  Anyway, so far we know - my ferritin (iron) level is low even though my regular BW showed my Hgb and Hct within normal.  And my B-12 was low normal but because of SX, they gave me an injection and started me on supplemets of that, iron, and Vit C.  No noticeable difference in 10 days . . .  Maybe some of this info can help you . . . 

    BTW, I was DX in 2007 as well, March 21.  Anyway, I was just so shocked to see someone talk about the same stuff I have been saying . . .  especially the words not coming out right, the mumbling etc and blurry vision.  Weird stuff.  I will say a prayer for both of us - for some answers.  And actually a prayer for all of us - who couldn't use an extra one or two?  Keep me posted if you'd like. Maybe you already have some answers. I sure hope so.

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  • 37antiques
    37antiques Member Posts: 643
    edited April 2011

    Hi Kaitsmom,

    I know it sounds awful to say it, but I am so excited you are experiencing the same thing!

    I had my thyroid checked too, that was fine.  I'm not taking anything so I don't have any possible side effects that it could be.  I did take some Vitamin D because that was supposed to perk me up, but I am consistently more tired week after week.  I leave the dinner dishes until after breakfast now.

    I see the new surgeon next week, maybe she'll do something new, exciting and wildly entertaining.  I admit, I am pinning a lot of faith into her to figure it out.  More so because I am tired of trying to get it figured out than anything else. 

    My mammo came back a Birads 4, the MRI I just had came back a Birads 3 on a microcalcification.  The downgrade is nice, but we didn't biopsy it, so I'm not ready for a happy dance yet, especially since they just removed all the micro's last year.  How fast do they grow anyway?  Because if they are going to find them every year I don't know that I can handle the suspense. 

    I had my eyes checked and told the eye doctor about the blurry vision, he told me I'm not getting any younger.  Yes, I realize this, but at 41 I am not quite in my dotage yet, surely there should be some reason for this sudden flare up?  I swear, the more answers I try to find the more questions I get.  I am getting nowhere fast!  But I will keep posting as I muddle through, there has to be an answer somewhere!

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  • kaitsmom
    kaitsmom Member Posts: 291
    edited April 2011

    Haha!!  I know what you mean - it just sort of helps to hear that someone else is having the same stuff!  So are we both nuts?! haha  At least your dinner dishes are eventually getting done - mine seem to be sitting there until my husband gets tired of looking at them the next day.  And I have a dishwasher!  So even less excuse!  And, I have never been one to leave dirsty dishes or even rinsed dishes sitting in the sink - can't stand the smell!

    I hope the new surgeon is able to help.  I was hopeful of the same thing when I went to a new onc in my same practice.  She was a little more sympathetic than lots of the docs, but nope, still not able to piece the puzzle together.  I have the horrible suspicion in the back of my mind, but then I wonder if it is just because of my bad history of how things have been found .  I just pray I am wrong. . .  sick of worrying, sick of feeling lousy, too.  And like you said, tired of trying to get it figured out. About the eyes - I just had mine checked and they only went up slightly in my already mild prescription which is for reading and computer.  But I feel there is an overall blurriness at times, and yes, mine was quite sudden as well.

    I noticed in one of your posts that you said that you were told that your cancer would definitely come back, that it was just a matter of time. I guess I am wondering what made your docs say that?  

    Where is Red Creek?  I am a former Western NYer. I will keep you posted if I learn anything that may be of any use to you!

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  • 37antiques
    37antiques Member Posts: 643
    edited April 2011

    I am smack dab in the middle of Syracuse and Rochester, then go all the way up, almost to Lake Ontario.  I'm about 2 miles away from the lake as the crow flies.  I'm not surprised you don't know where it is, our biggest attraction is the stop sign downtown!

    I don't know why they told me, I'm sure there is a formula somewhere for determining it.  I had treatment in Clifton Springs, they said they don't see people my age.  Lucky me.  Maybe because I have no maternal family history, possibly my age.  I had my blood sent off to the one lab that tests for the genetic mutation and I don't have that either.  The first surgeon didn't think I had cancer, wanted to wait and watch it because she was so certain.  Then they couldn't get lymph nodes, couldn't stage it.  Maybe they just told me that because I'm such a troublemaker!  They did say it was an aggresive grade 3, maybe in their experience all grade 3's recur.  I don't know, and they don't share.  There are a lot more things I want to know about rather than the stage, there has to be more than that to determine it.

    I have my yearly checkup with my oncologist next week too, maybe between him and the surgeon they can piece this together. 

    What side is your neck lump on?  Mine is on the bad left side.  Maybe that is the cause of all the problems!  My OB/GYN looked at it and said "I don't know what that is."  Maybe I should see a dermatologist.

    Anything you find would be great.  We can't be alone in this, someone else somewhere must have these symptoms!  Maybe it's something in the toxic chemical they fed us that year, but then again maybe we both just have a splinter that has settled on a nerve somewhere in our armpits!  Ha ha! 

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  • kaitsmom
    kaitsmom Member Posts: 291
    edited April 2011

    So, my lump is on my opposite side of my bad breast.  But . . .  the right breast also had some issues like microcalcifications, etc, for a few years before I had my bi-MX.  So of course there is always that fear, though the pathology in that breast was negative at the time of the MX, as was the node.  But that is the side that is hurting as well. So left breast was bad, rt breast was fine, but underarm problem and lump are on rt side . . .   Oh yes, the dermatologist!  I forgot to mention that!  She did a punch BX of the bump.  It showed signs of something going on in my body - don't ask how they now that from the cells in the skin on my neck lump!  But they said there was some sort of inflammatory process going on, but couldn't determine what.  That's why they did a bunch of blood work - thought it might be thyroid, check for artiritis, lupus, etc etc. Anyway, I and the derm are no wiser . . .   

    I will googlemap Red Creek - maybe the stop sign will be on the map.  I bet you get some bad winters?  I am a Buffalo girl myself, so I do know bad winters.  Have been in the South for 12 years and will only go back to visit in the summer.  But the summers along the Great Lakes are beautiful, aren't they?   

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  • 37antiques
    37antiques Member Posts: 643
    edited April 2011

    Did anyone ever biopsy your lump?  Maybe I should try that.  Things can't just lump up all over without some reason!  Iive also noticed some tiny red spots on my face, definitely post treatment.  I used to get them on my thumb when I was pregnant, so I'm sure it means something is growing in me.  Maybe I'm having an alien?

    Summer is beautiful here, we take the kids to Fair Haven bay to swim a lot.  Winter really could be a lot shorter.  There is still snow in the woods today, even though it is a warm day (all of 60!).  My husband swears the sunset is like no where else on earth.  I don't watch it enough to care, it's not enough to offset the cold!

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  • YramAL
    YramAL Member Posts: 1,651
    edited April 2011

    This is going to sound like it's come way out of left field, but have you ever been tested for "Cat Scratch" Fever?  A girl in my Girl Scout troop had a lump under her arm, was fatigued, was really not well at all. The doctors checked her for leukemia and lymphoma, Checked her for mono, and it turned out she had "Cat Scratch" fever. It is a real illness.

    Mary 

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  • kaitsmom
    kaitsmom Member Posts: 291
    edited April 2011

    Mary - At this point I am about ready to just hand the docs a list and say run every test in the book. Now! I bet Sue feels the same way.  Next up will be asking for a test for Lyme disease, and I will definitely mention cat scratch fever.  I guess I have heard of it, but know nothing about it.  I'll google it tonight. At this point, I imagine the docs think I am nuts, but I know damn well something is not right.  I wish the docs were as interested in doing all the research and connecting the dots as I seem to be. It's the fatigue that is the worst.  Went to a store today, wandered around for 30 mins, and was so exhausted I thought I was going to have to call someone to come and get me and drive me home. That's ridiculous.

    Sue, I used to love to swim in the lakes when I lived up there.  Now I cannot imagine getting in, even in the heat of summer, because the water is still so brzzzy.  I have gotten so spoiled by the warm ocean water in NC in the summer!  My lump was biopsied and the path report showed inflammatory process but they could not tell what was causing it,  thats why they ran more and more blood tests.  And still no diagnosis!  Let me know if you are having an alien - I would like to prepare my husband if in fact that's whats going on with me too!     

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  • 37antiques
    37antiques Member Posts: 643
    edited April 2011

    I do recall cat scratch fever, one of my boys had it a long time ago.  I do remember he swelled under both arms, lost his appetite and the doctor gave him an antibiotic to clear it up.  You really do get it from a cat scratch or bite.  I think the antibiotics the doctor put me on would have cleared it up, too, and I haven't been playing with any cats lately.  It does open a new line of thought...hookworm? ringworm?  I do have dogs, they seem healthy, but then again, you never know.  There are a lot of things you can get from pets.  Definitely not tapeworm, I eat, it shows.  I've even been thinking of a gas leak or something, but we have a new detector for that, and the old one for hoots and hollers, so that can't be it.

    I looked up fibromyalgia, there are some common symptoms there (morning stiffness, fatigue, muscle aches), but it doesn't cover everything and it talks about points, where a doctor can push on you near your joints just under the skin that causes pain, and depression.  I don't think I have the points and I'm not depressed, although I think it is a very real possibility someone will smack me with that label to get rid of me. 

    My husband told me today I have a bald spot on my head too.  Thanks Honey!  I can't recall losing a giant clump of hair, but there it is.  Wait a minute, am I going through chemo again and no one told me?  Or is chemo how I got an alien in the first place?  I wonder how long the gestation period is...and how do you tell if it's a boy or girl? And how do you decorate a nursery for that?

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