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cbnimh
cbnimh Member Posts: 40
edited January 3 in Not Diagnosed But Worried
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  • gb2115
    gb2115 Member Posts: 553
    edited July 2018

    Hi and welcome to BCO!! I was 38 when I was diagnosed with breast cancer. It was a lot to deal with but I got through it. If you have a bruised, sore, and dented breast, you really do need to have that evaluated. Even if it takes time and money. They will probably send you for imaging, and that's a good thing. I would not leave this alone, ignorance is not bliss. If it turns out to be nothing, then you can go on living your life as normal...if it's something, you want to catch it early.

    Do you have a gynecologist maybe? Someone who is experienced in breast exams?

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Hi and thanks for the welcome. I know I have to get checked, but I'm really getting frustrated. Something has been "off" for about 2 years now. No one can track it down. I get a lot of "you're young, it's probably nothing to worry about" and bills...lots of bills for blood tests, imaging tests, doctor visits, etc. I've started to think maybe I'm just going crazy.

    The lymphadenopathy and fatigue have been a constant since November of 2017. So, I feel like something isn't right, but I have no idea what. Now, this boob thing. I'm trying a different GP closer to my home so appointments aren't as tricky to schedule because of commute times. This office does it all from well-woman to pediatrics, which is good, because I hate having to go to multiple offices. Truth: I hate the healthcare system and hate visiting doctor's even more than I hate going to the dentist.

    I have a feeling when I go in it will be another "you're young so there's nothing to worry about" which will make me feel the way it always does...like a crazy person with symptoms that only exist in my head. Except I've got multiple lymph nodes in my neck that are rangong from 1-8cm in size at last check, a bruise that won't heal, dented boob and low grade temps every night. If it's just my mind manifesting all this, I'm impressed, but if I was going to have psychic powers I'd really rather just bend spoons or something.

    I've been check for everything from MS to TB to lymphoma to rheumatological illness...no biopsies of the current lymph nodes..but lots of blood tests and imaging.

    I feel like an attention seeking idiot when I go in. I'm somewhat humiliated to say I don't feel well when I dont have any clear reason for it.

  • peregrinelady
    peregrinelady Member Posts: 416
    edited July 2018
    Have you ever been screened for breast cancer, considering the location of your lymph nodes?
  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited July 2018

    CBnimh, I had a not-quite-similar experience when i was 43. Swollen lymph nodes, multiple allergic reactions (I'd never had an allergy in my life), extreme fatigue, back pain. They tested me for a lot of things and all they could come up with was anemia and depression. Seriously? When has anemia and fatigue caused allergic reactions? We never got to the bottom of it and eventually it went away, but it sure was a distressing year.

    I know you are thoroughly sick of going to the doctor, but you have to get these new breast findings checked out. May or may not be at all connected with your other symptoms, but you need to have the breast evaluated. It's true that your age makes it less likely that you'd have BC, but you can't afford to just roll the dice and hope for a win.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Oh yeah, I hear you. Especially on the anemia and depression part. I was told to take iron pills by the hematologist, even though I was only very slightly anemic, if at all. My GP (that I quit) said the lymphadenopathy was probably "stress" or "anxiety" (which I translayed as "since I don't know what is bothering you or why you have an 8cm lymph node in your lower neck...it's probably a manifestation of a diseased mind and not my level of competency).

    I will say, to be a little less snarky for a moment, I was very vitamin D deficient for many years. (This was found by a neurologist after I started having a lot of "complex" migraines that mimicked strokes.) I'm more or less migraine-free now that I'm not ridiculously vitamin D deficient.

    But, the iron pills did zilch. And I was only at the lower end of normal, anyway, as I recall.

    The other funny thing, remember how I said the doctors told me to lose weight and that maybe the weight was a factor?

    After I lost the weight?

    They told me maybe I lost the weight too fast (I didn't, I never lost more that 10lbs in a month) or that maybe I was sick because my body wasn't used to my new weight.

    So, there you have it. I'm not sure if my inner cynic is to blame for this thought, but I can't help thinking the medical professionals have the accuracy of a magic 8 ball sometimes.

    I've never had my breasts check for cancer over this (nothing weird until now). I had a mammogram back when I was about 32, I think. Nothing since. Lots of ultrasounds on my neck.

    Forgot to say, the hematologist did a full body CT with contrast in early 2017 and the GP did a CT with contrast (neck only for the lymphadenopathy) earlier this year. All they saw we're swollen lymph nodes, but nothing malignant.

    I really hate going to the doctor, though. I'm set up for Friday, but I feel like it's just going to be more of the same.




  • gb2115
    gb2115 Member Posts: 553
    edited July 2018

    Except for this time you do have a clear reason---if you have something different about your breast that is visible and palpable, I doubt they will blow you off. They will probably send you for a mammogram. I would be extremely surprised if they don't check it out.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    I would hope they wouldn't blow me off. But it's been a couple of years of feeling like docs are great at collecting co-pays and poking me with things but not really good at figuring out what's wrong. Not nice, I know, and I don't mean to be salty or adversarial, but it's so time consuming and expensive to run around to so many places. I feel like it took away from my kids, which I really resent.

    I can only imagine how costly cancer is, so it had better not be that. I'm already working 2 jobs. I'm married, my husband works, but we have 4 kids right at the "and you thought the baby years were expensive" point of development Loopy (ages 8-18) We also don't have extended family so everything that happens really rests on my husband and I...and now he's older and to a lesser extent, our 18 year old. Dumb as it sounds, I'm more worried about the impact of me being sick financially and on the kid's needs. Anytime I'm down, it's a drag on the whole household.





  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited July 2018

    I think most of us feel the same as you, CBnimh. The thought of cancer is not just horrifying in itself, but the potential for financial destruction is real. It's even worse when your support system isn't as broad as you'd like it to be. My DH & I live at least 400 miles from our families, which means we have always been pretty much on our own during times of crisis. And we have had a LOT of crises in our lives. Somehow, we manage to get through it. I'm fortunate that my kids are adults (finally!), but we went through some awful stuff when they were little. Brain tumor, severe mental illness, stage 4 lung/heart disease, disabled child, suicide attempts. Thankfully, DH and i took turns needing help. At least one of us had to be strong for the kids. And we did it.

    Sometimes our help comes from the most unexpected people. Even though my family lives far away, I thought they would rally around me. Nope. Other than my brother who drunk-called me for weeks begging me not to die because HE couldn't stand it, everyone pretty much deserted. My adult kids supported us. DD cooked many meals. DS took me to the ER when i got sick from the chemo. Friends at church that we had only known a short while came to our rescue. They brought meals, sent cards, and called to check on us for several weeks during the worst of my treatment, and when DH was diagnosed with prostate cancer at the end of my own cancer treatment, they stepped up AGAIN to help with meals, cards, and calls. i love my siblings, but in the end it was my "alternative famly" who stood in the gap for us.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    mustlovepoodles, I'm sorry you'be had to go through all that. And the drunk dialing..always one in the bunch, right? Alternative family can be the best family. One of my best friends died earlier this year, shortly after my grandmother passed, and she was literally my rock during some difficult times. She was a cancer survivor several times over. We helped each other. My other best friend is in remission now for a couple of years. I've helped her through things and vice versa. That's to say nothing of the really wonderful people at church who go the extra mile for each other. Friends can be more family than family. Especially friends who are also church family. And I couldn't do without my kids. My oldest has always been a huge help.

    My biggest concerns with testing, doctor appointments or being sick, are how it might impact my kids... especially the family finances. I don't want to put a dollar sign on existence, but I couldn't afford to get sick. Not that anyone can, really, but I know healthcare costs a mint.

    It probably pales in comparison to what others have spent, but just the little bit of time and money chasing my tail these last 2 years with doctors. I feel like I'm forever going in for nothing, or at least nothing that produces a result I can do something about.

    I really do fear being a hypochondriac as much as I fear appearing to be one. But, I'm still going in on Friday. I'd just like to figure something out. Even if it's a virus lingering or some other simple thing, I'd feel better to know the time/money figured it out than a constant game of shadow chasing

    Thanks for listening


  • Lula73
    Lula73 Member Posts: 705
    edited July 2018

    I am so sorry these symptoms are plaguing you. I am very surprised the hematologist threw her hands up and gave up. Make sure when you see the dr on Friday that you bring up all the symptoms. Swollen lymph nodes that don’t go away, fatigue, low grade fever mostly at night that’s been going on for well over a year, sweats at night for well over a year, immature granulocytes, high WBCs, slightly anemic, now the bruise that does not heal & the dent. I sincerely hope it’s not cancer, but all those symptoms are consistent with Hodgkin’s lymphoma and several different leukemias. They are classic signs (I should know.) Some leukemias are very slow advancing ones. That’s why I can’t believe the hematologist just gave up. It sounds like you are supermom, superwife, superemployee. Always putting everyone and everything before yourself. I am that way too. It’s really tough to put yourself first. But if you don’t, you may not be able to continue taking care of everyone else.

    For your appointment on Friday - Drs work best having just the facts as concise as possible. Write down all the symptoms you've been experiencing and for how long...point out that the lymph nodes don't go down (this means they are NOT reactive), fevers at night & night sweats are every night, and that all this has been going on for more than a year. Hematologist did workup that showed slight anemia, immature granulocytes, and high white blood cells. These did not change during the time you saw her. She couldn't find an answer. CT and U/S show enlarged lymph nodes - we already knew that. Now the breast bruise that won't heal and the dent are added to the list of symptoms that are STILL PRESENT. Then tell the dr you need real concrete answers as these symptoms are not normal and are adversely affecting your life and then ask him to help you get to the bottom of this. If it does turn out to be something vs nothing it's better to catch things as early as possible for best outcomes. In the meantime I will be hoping and praying it all turns out to be nothing. Please keep us posted &feel free to ask questions and/or vent whenever you need to. Good luck on Friday🍀.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Lula73, Thank you. Yeah, I was surprised, too. But, with the bone marrow biopsy coming back fine and the immature granulocytes not being too high (high but not too high?) she little told me 1) I was overweight so maybe that was it 2) maybe it was my "new normal".

    I will say, after losing weight, my white count did go back to normal, but around that same time I had normal labs the lymphadenopathy showed up and hasn't left. It's just there. The first one that showed up is small and kind of hard near the surface, the others are deeper in my neck but you can see them if I turn my head a bit. I've had some rashes there, but I have some issues with mild psoriasis and sensitive skin. So, that doesn't mean much.

    I definitely want them to just figure it out. Very frustrating.

  • Lula73
    Lula73 Member Posts: 705
    edited July 2018

    you mentioned it was easy to lose the weight...it sounded like perhaps it had been difficult before? If so, that’s another thing to include on your symptom list. If it was me, I’d ask for mammo, breast MRI, perhaps a CT scan, and an excisional biopsy of those lymph nodes. Does it hurt to turn your head?

  • Recap
    Recap Member Posts: 4
    edited July 2018

    Be sure all images and reports are available in advance for any provider to read/view. As part of time management, they often look at their clinic list ahead of time, and read/view what is available, before the visit-this is good for you.

    New computer systems are helping with information management, but as with a single national health insurance, we still don't have a single national med records/imaging system. Multi-local is still the norm and confusion the result.

    When you bring records/images with you to the appointment the time crunch of a busy schedule often gets in the way, which is why you will often hear pts say they never even looked at it.

    Sad to say, but with constant computer changes, it may be available to them, but providers may assume it isn't, when in reality they haven't been taught well how to find things in the computer. (I asked once whether they really wanted to order a CT when the patient had recently already had the same one. The patient didn't know the name of the test he had, and the bare bones reference to it was buried within pages and pages of overly structured medical records. They sent for the one he already had.)

    GP's in particular avoid looking at imaging and rely on the radiologist's report. In my experience, GP's don't even seem to know what views to order when imaging is needed. Even specialists disagree about what to order.

    The verbal interplay during appointments can also get in the way. The sweet, interested m.a./nurse beforehand can misrepresent you to the provider, so less chat is good.

    The clerk who scheduled you? Ask them to read back to you what they typed on your appointment line to be sure it feels accurate to you.

    Many an appointment has been derailed before the provider ever comes in the room.

  • wonderland
    wonderland Member Posts: 2,741
    edited July 2018

    A good friend of mine in her 30s has been diagnosed with Hodgkin's lymphoma this year. Your symptoms sound just like hers - night sweats, fevers, weight loss, etc. Here is a list of symptoms from the Mayo Clinic. Have you been checked for this???


    Signs and symptoms of Hodgkin's lymphoma may include:

    • Painless swelling of lymph nodes in your neck, armpits or groin
    • Persistent fatigue
    • Fever
    • Night sweats
    • Unexplained weight loss
    • Severe itching
    • Increased sensitivity to the effects of alcohol or pain in your lymph nodes after drinking alcohol
  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Lula73, Yes, I had trouble losing weight after my youngest was born. The lowest weight I'd been since then was 175lbs. Now, I don't think I could regain that weight. I was dieting, but I stopped doing anything a few months ago to lose weight or maintain, just out of curiosity, I even ate pretty shamefully for about a week and didn't see the scale budge. My normal metabolism used to be more like "look at donut = gain 10lbs". I mean, I'm at a healthy weight now, and I'm smaller now than I was in my mid-twenties, it's just weird. It doesn't hurt to move my neck, though.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Recap, I need to collect records from all over. I do have the ones from my GP when I decided to find a new GP. It's scary how much potential there is for human error. Sometimes I wonder if I could just have Watson for a doctor, I could feed in all the data points and get all the dots connected for an answer.

    Thank you for the advice. All good points.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Wonderland, I'm sorry to hear your friend had that diagnosis. For me, I'm pretty sure the hematologist covered that with the bone marrow biopsy. I think that test coming back ok is where she just kind of reached the point of just shrugging and saying "whatever's going on isn't leukemia or lymphoma".

    I'm confused, myself. My old GP kept saying the lymph nodes were no big deal, but continued follow up appointments, referred me to an ENT, rheumatologist, planned to keep up with it on ultrasound. I never went to ENT. I haven't had a chance to and I wanted to switch GPs anyway. I just didn't feel like I was getting anywhere and the commute to that office was making it hard to schedule. I was ending up seeing the GP once a month or more for months... that's a lot of time/money for no result. I was honestly starting to feel scammed...and a bit stupid.

  • wonderland
    wonderland Member Posts: 2,741
    edited July 2018

    CB: So sorry you are dealing with all of this. It's frightening to know that something is wrong within yourself but nothing can be detected by scans, blood work, or biopsies. Keep pushing until you find an answer. Don't give up. Heart

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Well, I saw the doctor. She's new to me. First appointment and she was an hour late and spent about 10 minutes with me at most. She actually said she forgot to check my lymph nodes and kind of checked them at the check out desk as I was getting my orders. I'm not sure what to think. She seemed pretty dismissive, but she did say she saw the dent and felt a "non-discrete" mass. I don't think she heard half of what I said, nor did I get the impression that she cared. I felt even more stupid for going in and for changing doctors, because if this is how this office conducts itself... they're even worse than the last. They even forgot what I was coming in for and shuffled me around exam rooms prior to having me sit there for an hour.

    The lymphadenopathy she said was probably normal. I don't know what to think. She gave me orders for a mammogram and ultrasound. That appointment is next Tuesday. The orders just say breast pain and nothing about the mass, too.

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited July 2018

    Good grief. That sounds inauspicious. At least she ordered the mammo and US. I'd suggest you call the facility and tell THEM about the mass you found Then they can follow up with your doctor if she didn't order the right test.

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    I did tell the mammogram place. I guess they're a "breast center" so that gives me a hope that they'd be pretty well aware of breast conditions--cancerous and otherwise.

    It's a pretty big knot and easily seen when I lift my arms - if the discoloration wasn't a give away to something to check. Even if it's just fibrous, normal tissue, I think it would be hard to miss. But I did mention when scheduling, anyway.

    I don't know if the doctors around are just all this goofy and disinterested/disorganized..or if I'm just really bad at picking. I checked reviews around and was hopeful this would be better. Having her check my lymph nodes at check out (and not in any way that could be called thoroughly) was next-level weird. I had the impression she was eager to catch up and sloppily running through patients to do so. Not a good sign. Also seemed a little immature.

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited July 2018

    No kidding! Not a good way to run a practice. Hopefully, she was just having an off day.

  • Lula73
    Lula73 Member Posts: 705
    edited July 2018

    CBNimh- if you’ll PM me or post on the thread the city & state where you live I’ll see if I can get a recommendation on a good thorough doctor who listensfor you.

  • peregrinelady
    peregrinelady Member Posts: 416
    edited July 2018
    An incompetent PCP (and radiologist) caused me to be misdiagnosed. Checking your lymph nodes as an afterthought is disgraceful since that was your main complaint. I hope you can find someone better. Nice of Lula to offer to help you. Good luck on Tuesday and let us know how it goes.
  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2018

    There are doctors who just want to see simple, cut and dried health issues: ten minutes, write a prescription, next please. Then there are doctors with the caring and curiosity to want to get to the bottom of what is going on, and are willing to really think, and maybe consult colleagues or refer you to a specialist. If you can access a university teaching hospital, you might find doctors who are more willing to see the big picture and look into what is going on. Insist on it.

    I think Lula's suggestion to write up all your symptoms very clearly is right on. Make it short and sweet, just the facts, with dates or length of time. Send it ahead of time, and also bring copies. Give the check-in person a copy and ask that it be given to the doctor before you are seen. When you see the doc, look at your copy and try to state things clearly and briefly, and do not assume they have read your notes or your medical records. Do not assume the nurse you talked to first has relayed everything you said to the doctor. Can you take an ally with you who is logical and assertive?

    Now I hope this does not sound paranoid, but I wonder if some doctor has written something in their notes that encourages your subsequent docs to be dismissive. Some doctors, rather than admit they do not know how to diagnose the patient, would rather say the patient is overly anxious, seeking attention, depressed, just getting older, etc. (And how is overweight any kind of explanation?) You could get copies of your clinic notes from the medical records person/department for your docs and take a look. I always order and hand-carry mine so I have a chance to check for inaccuracies, and even with the best docs, I find things that need to be corrected.

    Good luck, CB!

  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Peregrinelady, I'm sorry you went through that, but I'm not surprised. It's absolutely bizarre what I've run into. It makes me wonder who is training these folks.


  • peregrinelady
    peregrinelady Member Posts: 416
    edited July 2018
    Thanks, I just don’t want it to happen to anyone else. I am glad that you are being persistent. I live in a small town, but travel 90 miles for my cancer care. I should have left town for my PCP, as well. Try to enjoy your weekend and hope to hear from you on Tuesday.
  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    ShetlandPony,

    I think you nailed it there with the 10 minutes, simple problems + Rx and out the door.

    I did give her a very simple run down of the problem lymphadenopathy since November, dented/bruised/lump in breast. I briefly mentioned the hematologist. I didn't bring anything, this first time, because I figured I just wanted the mammogram and ultrasound for now. Also, because I wanted to see how these people were with just the very basic picture, first, before bringing in a stack of records.

    So, as far as that goes, mission accomplished, but that was kind of a given because this boob is looking a little weird. It would have to be a shockingly brain addled medical person that didn't refer me for that.

    I do feel a little paranoid, like maybe people just don't like me, or something along the lines of of that. But, as I didn't bring records or tell them where I was seen before, I really think this woman was just trying to push through a high number of patients in a short time. Nothing personal, greedy maybe, but not a personal affront. I doubt anyone ahead of me faired much better.

    I had low expectations going in...I've just never had a doctor do a slap+dash check of my lymph nodes at the check out counter. That's new lol...*sigh*

    At least I have the test. So, hopefully the machinery and the radiologist won't be as goofy. Here's to hoping.

    Edit to add, I don't really have anyone to go with me. Best case scenario would be my husband, but he gets a little weird around anything medical. Going to the cancer treatment center for the hematologist made him extra weird. Instead of helping at the appointment, I think some of what he said made them more dismissive. Same with our former primary care physician. The only practical person I know (that isn't dead now or busy working) is my son that's in college...but no way am I taking him to an appointment like this. Even if it was just the lymph nodes, that wouldn't be fair.

    I'll definitely update. If nothing comes of it, at least maybe it will help put someone else's mind at ease if they go Google breast dents, bruising and lymphadenopathy.


  • cbnimh
    cbnimh Member Posts: 40
    edited July 2018

    Peregrinelady, I appreciate the input. I'm having a hard time persisting, because I did give up for a bit. Starting to feel like I'm nuts. I'm in a relatively large city. The problem here seems to be one of too many options rather than too few. Sure, there are lots of doctors and facilities, but which one is the one that will take the time to help? With so many people around, I think there is a tendency to focus on quantity over quality, because undoubtedly that's probably better for the bottom line. Maybe I'm very wrong. I don't know.

    Honestly, I'd rather never set foot in an office again. But, I worry if it is something then I will have been very stupid to do that.

    I'll definitely update and try not to think of it until I have to. Could be nothing. I'd feel safer in that knowledge if I trusted the people in charge, but I'll cross that bridge next week.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2018

    Ok, you can handle the appointment on your own, CB. Go in there with a "you will listen to me and help me" attitude. And your BCO friends will be in your pocket.

    P.S. It seems like the lymph node check at the counter might be a HIPAA violation.