New to forum; awaiting information and have upcoming medical appointment. Need advice on questions t

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  • PBL
    PBL Member Posts: 366 Member
    Fingers crossed...

    Thanks for your update. Glad the car wreck brought no harm beyond the material aspect of it!!

    Keep hanging in there, and do let us know what the results are - whatever they turn out to be.

    PBL

  • Melt
    Melt Member Posts: 31 Member
    PBL said:

    Fingers crossed...

    Thanks for your update. Glad the car wreck brought no harm beyond the material aspect of it!!

    Keep hanging in there, and do let us know what the results are - whatever they turn out to be.

    PBL

    Since everyone here has been

    Since everyone here has been so kind, I thought I'd let you know what I've got so far in the way of updates:

    I think it's mostly good news!

    Ultrasound results from both the breast/axillary lymph node exam and neck exam have been uploaded to my patient portal.

    The left axillary lump that has been present for a couple of years was deemed to have not increased appreciably in size and to appear benign, with no alarming characteristics noted on that breast. They had gone ahead and also looked at a hard spot on my right breast that had developed shortly before the ultrasound was performed, and couldn't really find anything on the US and concluded that it was a gland that can swell and sometimes cause pain during the menstrual cycle that I was more aware of now because of all the weight loss. 

     

    The neck results are a little more confusing, but I think largely good. The report noted bilateral lymph swelling with benign characteristics. I'm happy with this, although moderately confused, because while I do have one very slightly enlarged node on the right, I have several of varying sizes on the left. The one bigger lump on the left doesn't seem to be mentioned at all in the US report and I'm wondering about that a little bit, but I guess I'll ask my doctor when I see her.

    The CT report has not uploaded to my portal yet, but I did (of course) miss a call from the doctor's office this morning. When I called back, I was told that my doctor was out of town this week and had requested an appointment be scheduled next week to go over my results. They didn't have more to say, but I'm guessing that given her attentiveness so far, she'd probably let me know if there was something concerning about the CT results? 

    I will see her Thursday morning when she is back in town. I believe I won't really be receiving any answers about the symptoms I've been having, but all the same it is good if they haven't found anything serious with all the tests they've done. 

     

    Does anyone have any further advice? Should I feel pretty good about this so far? Even though I have so many neck lymph nodes popping up and no sign of infection, I can't imagine the US missing something serious.

     

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited February 2021 #44
    just wondering ...

    was the CT performed with contrast?

  • PBL
    PBL Member Posts: 366 Member
    edited February 2021 #45
    Not professional medical advice, but...

    ... I believe you may start feeling better about this whole episode.

    Ultrasound imaging shows organ structure - including that of lymph nodes. Cancer causes loss of internal organ structure. The fact that your ultrasound exams do not seem to demonstrate any abnormality in that respect is credible cause for a huge sigh of relief.

    As previously suggested, lymphoma is not the only explanation for popping nodes. Conversely, you do not necessarily need any suspicious nodes to have lymphoma - in my experience anyhow.

    When you see your doctor next Thursday, depending on what she suggests in terms of diagnosis you may want to ask her if this is worth a referral to a hematologist for your peace of mind and specialist assessment.

    In the meantime, start getting some sleep and try and see if some of your most bothersome or worrysome symptoms start easing up. The mind can really play tricks on the body.

    Do keep us updated as your experience contributes to enlightening other newcomers!

    PBL

  • Melt
    Melt Member Posts: 31 Member
    edited February 2021 #46
    ShadyGuy said:

    just wondering ...

    was the CT performed with contrast?

    It was performed with

    It was performed with contrast, as I understand it because I'm currently underweight. Still haven't gotten those results, but I feel better about things. 

  • Melt
    Melt Member Posts: 31 Member
    PBL said:

    Not professional medical advice, but...

    ... I believe you may start feeling better about this whole episode.

    Ultrasound imaging shows organ structure - including that of lymph nodes. Cancer causes loss of internal organ structure. The fact that your ultrasound exams do not seem to demonstrate any abnormality in that respect is credible cause for a huge sigh of relief.

    As previously suggested, lymphoma is not the only explanation for popping nodes. Conversely, you do not necessarily need any suspicious nodes to have lymphoma - in my experience anyhow.

    When you see your doctor next Thursday, depending on what she suggests in terms of diagnosis you may want to ask her if this is worth a referral to a hematologist for your peace of mind and specialist assessment.

    In the meantime, start getting some sleep and try and see if some of your most bothersome or worrysome symptoms start easing up. The mind can really play tricks on the body.

    Do keep us updated as your experience contributes to enlightening other newcomers!

    PBL

    Boy, can it! I think once I

    Boy, can it! I think once I actually do speak to her, I'll feel a lot better. I'm already feeling reassured, but unfortunately these symptoms were all going on a lot longer than the recent doctor/testing experience. What set this all off was me having had severe abdominal cramps and exhaustion for about a year, with the exhaustion getting progressively worse and eventually coinciding with fairly abrupt weight loss while eating more than usual (holidays). Eventually my appetite waned as well, and I feel full quickly, but that has been more recent a quite possibly stress. When I first saw the doctor about these symptoms, that was when she did a full exam and discovered enlarged lymphs, a couple of which I'd been aware of for a long while, and others I hadn't noticed until recently. 

     

    That said, I really do think it's likely stress and worry during this testing process has made things a million times worse and also made me hyper aware of ever little weirdness my body might throw my way!

     

  • PBL
    PBL Member Posts: 366 Member
    edited February 2021 #48
    Winding down...

    ... try and see if feeling more relaxed makes any difference on your sleep, appetite, digestion, etc.

    And don't forget to enjoy the weekend!

    Do keep us updated on your next appointment. 

    PBL

  • Melt
    Melt Member Posts: 31 Member
    edited February 2021 #49
    PBL said:

    Winding down...

    ... try and see if feeling more relaxed makes any difference on your sleep, appetite, digestion, etc.

    And don't forget to enjoy the weekend!

    Do keep us updated on your next appointment. 

    PBL

    Will do, thank you! I have

    Will do, thank you! 
    I have gotten a lot of weird paintings out of all this anxiety recently, but I am more than ready to leave it behind! 
    thank you for all your kind advice-- I realize it must be a little taxing to deal with all the anxiety surrounding people who have not yet had life changing diagnoses, when you yourself have experienced first hand the challenges of actually dealing with a cancer diagnosis. 
    best of luck, everyone!

  • Melt
    Melt Member Posts: 31 Member
    edited February 2021 #50
    Hi guys, I posted in a new

    Hi guys, I posted in a new thread but was encouraged to update the old one too/instead  

     

    I just had my results appointment with my doctor today and thought I'd let you all know how it went. 

    All is seemingly good, barring some anatomically strange elements which evidently shouldn’t be causing problems. 
    She thinks my big groin nodes might have been caused by my at the time kitten scratching me a couple of months ago on the thigh! Said CT indicated for now they’re structurally normal, but slightly enlarged nodes. 
    Said we needed to watch the biggest neck lump now, because it’s clinically too small to biopsy, but it may be warranted later.

    Time will tell, she says, so we're checking it again in a few months and I'm to call her if it goes nuts. Said the weird nerve sensations which are driving me crazy are because of where it is located  

    She’s testing me now for EBV, Lyme, cat scratch and another CBC panel to double check, and because I've started bruising badly and painfully and I've got a dry intermittent cough (although lungs sound good), but I'm not anemic at all per the bloodwork from about three weeks ago.

    Otherwise we'll rescan the neck in a couple months. 

    I have some sort of stomach inflammation that may be causing the lack of appetite and weight loss. Perversely, I have to not eat for 24 to 48 hours once a month with only liquid foods in order to see if the inflammation comes down and we'll go from there. She also said something about a test for celiac, but I'm not sure if that's being looked into with this round of bloodwork or not. I've had a pretty gluten heavy diet my whole life, so I'm not sure about it, although it seems like there is some overlap between celiac symptoms and what I've experienced more recently. Both my toddler daughter and I have a recurring usually non itchy "chicken skin" rash, though, so she thought that may possibly be related. 

  • WorriedMom2
    WorriedMom2 Member Posts: 8
    edited March 2021 #51
    Melt said:

    Hi guys, I posted in a new

    Hi guys, I posted in a new thread but was encouraged to update the old one too/instead  

     

    I just had my results appointment with my doctor today and thought I'd let you all know how it went. 

    All is seemingly good, barring some anatomically strange elements which evidently shouldn’t be causing problems. 
    She thinks my big groin nodes might have been caused by my at the time kitten scratching me a couple of months ago on the thigh! Said CT indicated for now they’re structurally normal, but slightly enlarged nodes. 
    Said we needed to watch the biggest neck lump now, because it’s clinically too small to biopsy, but it may be warranted later.

    Time will tell, she says, so we're checking it again in a few months and I'm to call her if it goes nuts. Said the weird nerve sensations which are driving me crazy are because of where it is located  

    She’s testing me now for EBV, Lyme, cat scratch and another CBC panel to double check, and because I've started bruising badly and painfully and I've got a dry intermittent cough (although lungs sound good), but I'm not anemic at all per the bloodwork from about three weeks ago.

    Otherwise we'll rescan the neck in a couple months. 

    I have some sort of stomach inflammation that may be causing the lack of appetite and weight loss. Perversely, I have to not eat for 24 to 48 hours once a month with only liquid foods in order to see if the inflammation comes down and we'll go from there. She also said something about a test for celiac, but I'm not sure if that's being looked into with this round of bloodwork or not. I've had a pretty gluten heavy diet my whole life, so I'm not sure about it, although it seems like there is some overlap between celiac symptoms and what I've experienced more recently. Both my toddler daughter and I have a recurring usually non itchy "chicken skin" rash, though, so she thought that may possibly be related. 

    Any updates? I have MANY

    Any updates? I have MANY similarities to you. In December I had a "Bartholin's cyst". Shortly after I had 10+ cysts all over the genital area. STI was negative. They all just went away. I ended up getting a transvaginal ultrasound because I had been having TERRIBLE lower abdominal bloating. That showed a large cyst on my ovary. Appeared normal so they suggested having a follow-up U/S in 8 weeks to see if the cyst had gone down. Fast forward a month later, one night I noticed a very large swollen inguinal lymph node. The following week I was itching from head to toe with no rash, redness, or dry skin. This itchiness persisted for a week with ZERO relief. Here I am 6 weeks later, with the lymph node still enlarged. It have noticed it has been enlarged for 8 weeks+ now. I am always super tired. I have terrible headaches. 

    Since noticing my enlarged lymph node they have done a chest x-ray, TONS of blood work, urinalysis, and pap/pelvic. All Normal. They did do an ultrasound of my groin to look at the lymph nodes, they measured 2.3 cm on the left side and 1.5 cm on the right side. Put radiologist put "normal-appearing". I also had my repeat transvaginal ultrasound that showed my ovaries had follicular cysts on both ovaries. I am TERRIFIED. I have been so worried and stressed about this. I am only 28 with two young children. 

     

    I currently am awaiting a follow-up appointment with my OBGYN this Thursday, derm (for the itchy skin which makes NO sense) in 2 weeks, and just got a referral for a hematologist today. so that probably won't be for a few more weeks. They were originally going to send me to the general surgeon but canceled my referral until after I saw OBGYN.  I really just wanted to go to the surgeon in hopes that they would just biopsy the dang node so I didn't have to worry about it anymore. I am going to push for that as well as a CT scan hopefully.

     

    I should add that I have intermittent cramping as well as lower back pain that almost feels like menstrual cramps, but are not. and of course, the severe bloating in the lower abdomen is still going on as well as feeling very full every time I eat.  

    Let me know any and all updates if you have any??! Hope all is well. 

  • GGc0ok
    GGc0ok Member Posts: 54 Member

    In the ring

    Melt, everyone here has been through the ringer; it is the nature of the lymphoma experience.  My Gma out on the wheat farm in Kansas in the 60s still had an outside two tub setup: one side was to hand wash, the other side had a ringer mounted on it, and clothes were sent through, to squeeze all of the water out of them, to then hang on the line.

    Cancer treatment is the ringer: is squeezes out all of the bad, to lead to a new freshness in the warm breeze.   Think of the coming breeze, not the current ringer.

     

    .

    Max I hadn’t read this until today

    Max I hadn't read this until today. I like this analogy.  I'll think of the coming breeze as well. Not the ringer. 
    GG

  • Melt
    Melt Member Posts: 31 Member

    Any updates? I have MANY

    Any updates? I have MANY similarities to you. In December I had a "Bartholin's cyst". Shortly after I had 10+ cysts all over the genital area. STI was negative. They all just went away. I ended up getting a transvaginal ultrasound because I had been having TERRIBLE lower abdominal bloating. That showed a large cyst on my ovary. Appeared normal so they suggested having a follow-up U/S in 8 weeks to see if the cyst had gone down. Fast forward a month later, one night I noticed a very large swollen inguinal lymph node. The following week I was itching from head to toe with no rash, redness, or dry skin. This itchiness persisted for a week with ZERO relief. Here I am 6 weeks later, with the lymph node still enlarged. It have noticed it has been enlarged for 8 weeks+ now. I am always super tired. I have terrible headaches. 

    Since noticing my enlarged lymph node they have done a chest x-ray, TONS of blood work, urinalysis, and pap/pelvic. All Normal. They did do an ultrasound of my groin to look at the lymph nodes, they measured 2.3 cm on the left side and 1.5 cm on the right side. Put radiologist put "normal-appearing". I also had my repeat transvaginal ultrasound that showed my ovaries had follicular cysts on both ovaries. I am TERRIFIED. I have been so worried and stressed about this. I am only 28 with two young children. 

     

    I currently am awaiting a follow-up appointment with my OBGYN this Thursday, derm (for the itchy skin which makes NO sense) in 2 weeks, and just got a referral for a hematologist today. so that probably won't be for a few more weeks. They were originally going to send me to the general surgeon but canceled my referral until after I saw OBGYN.  I really just wanted to go to the surgeon in hopes that they would just biopsy the dang node so I didn't have to worry about it anymore. I am going to push for that as well as a CT scan hopefully.

     

    I should add that I have intermittent cramping as well as lower back pain that almost feels like menstrual cramps, but are not. and of course, the severe bloating in the lower abdomen is still going on as well as feeling very full every time I eat.  

    Let me know any and all updates if you have any??! Hope all is well. 

    I apologize! I meant to reply

    I apologize! I meant to reply directly to you. See my comment below. 
    May I ask if the bartholin cyst was ever infected or if you had surgery to remove it? the working hypothesis from my doctor is that the neck and under lymph nodes are the problem and are related to my actual symptoms, but that the groin nodes were a timely coincidence having to do with the bartholin cyst. 

  • Melt
    Melt Member Posts: 31 Member
    Yes and no to the updates; I

    Yes and no to the updates; I came back here to update my post and saw your question! I am sorry you're going through this. 

    My groin lymph nodes had actually gone down to non concerning sizes at the time of my CT scan. My doctor is pretty sure their being enlarged was a coincidence having to do with my bartholin cyst surgery and that it wasn't related to the other lymph nodes under my arm and in my neck. 

    Most recent developments are that my GP decided she wasn't satisfied entirely with not having an answer and put in a referral for an ENT. Several weeks went by and they had not set an appointment, so with the referral already out there, I got the go ahead to talk to my daughter's ENT. I saw him yesterday and he wasn't exactly screaming with concern, but he wasn't happy and he was annoyed by a few things. He said my doctor ought to have prescribed antibiotics as a matter of course, even without obvious signs of illness in my bloodwork, and should have ordered a head and neck CT. So he's got me on antibiotics for two weeks, then a follow up with CT and he's looking to remove a lymph node. The supraclavicular nodes wax and wane, but they were popped up yesterday and he's hoping a node somewhere will be a candidate for excisional biopsy. He also identified a spot of concern on my tongue on the left side (same side as all the nodes) and mentioned getting a biopsy of that. 

    This is truly unwelcome news because I smoked for ten years and possibly have other risks factors, and also because in my early twenties I watched a cousin die horribly of an oral cancer that was missed until it was too late. 

    I started the antibiotics yesterday and was paying more attention I guess, because they were making me feel fairly crappy and I wanted to be alert to side effects, and therefore I noted that I'd woken up drenched in sweat from the shoulders up. Head and neck area, hair wet. I realized after the fact that this has been happening for weeks, and Id been so focused on the idea of watching out for full body drenching sweats that I'd always just dealt with it. More than anything I've been annoyed at having to shower and rewash my hair in the morning even after a shower before bed. 

    I have no idea what this means or if it's unrelated to everything else, so I'm hoping someone here can weigh in. 

  • Melt
    Melt Member Posts: 31 Member
    edited March 2021 #55
    Seeing the ENT again Tuesday.

    Seeing the ENT again Tuesday. I've got my fingers crossed and I'm just going to sit tight and see what he says, but i complet the antibiotics and so far no change. In the last few weeks the largest previously static node has filled out to what feels like approximately 3cm and is clearly visible as a lumpy asymmetry. The cluster of supraclavicular nodes that seemed to come and go before seem popped up to stay, and after looking at a photo of myself from yesterday, I broke my no "poking them" rule and felt the largest to be about 2cm. Clearly visible, because I've lost so much weight. I suppose the likelihood of the full head/chest scan is a bit higher now. Back to dropping weight and it's beginning to look quite dramatic/gaunt. 

    ugh. 

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    You may want to start a new

    You may want to start a new thread. This one is getting very long and hard to follow. Goof luck and all my best to you.

  • Melt
    Melt Member Posts: 31 Member
    ShadyGuy said:

    You may want to start a new

    You may want to start a new thread. This one is getting very long and hard to follow. Goof luck and all my best to you.

    i will do that! I had gotten

    i will do that! I had gotten the idea it was frowned upon. 

    Thank you for the well wishes; I appreciate the "goof luck" most of all, I think!

  • PBL
    PBL Member Posts: 366 Member
    Sorry to see the situation hasn't resolved yet...

    Hi Melt,

    Starting a new thread is definitely not frowned upon - however, it can be difficult to keep track of a given poster's history on this forum, as there is no way to find your previous posts with an "alias" search... When someone returns after several months or even years, the "old-timers" may still remember him or her well, but others may feel that they cannot contribute because they have no idea what that returning individual's history might be.

    One way to avoid that is to keep posting in the same thread, which can, over time, make reading teadious. Another way I can suggest would be to include a reference to the title of the initial thread in the subsequent ones. Wink

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited March 2021 #59
    PBL said:

    Sorry to see the situation hasn't resolved yet...

    Hi Melt,

    Starting a new thread is definitely not frowned upon - however, it can be difficult to keep track of a given poster's history on this forum, as there is no way to find your previous posts with an "alias" search... When someone returns after several months or even years, the "old-timers" may still remember him or her well, but others may feel that they cannot contribute because they have no idea what that returning individual's history might be.

    One way to avoid that is to keep posting in the same thread, which can, over time, make reading teadious. Another way I can suggest would be to include a reference to the title of the initial thread in the subsequent ones. Wink

    You are correct ....

    however a lot more people will tend to read a thread with short concise posts. Whatever works for any particular member is what that person should do. Just making a suggestion.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited March 2021 #60
    ShadyGuy said:

    You are correct ....

    however a lot more people will tend to read a thread with short concise posts. Whatever works for any particular member is what that person should do. Just making a suggestion.

    History

    Melt,

    I just traced through this thread of yours.   Two months and two pages, almost exclusively of doctors telling you they do not think you have lymphoma.   With sprinkles of insurance delays and why you think the doctors are wrong.   Several posts, detailing that various nodes have shrunken.    No one has lymphoma until a biopsy says they have it.    Why operate on assumptions, and never trust the doctors ?

  • Melt
    Melt Member Posts: 31 Member
    edited April 2021 #61

    History

    Melt,

    I just traced through this thread of yours.   Two months and two pages, almost exclusively of doctors telling you they do not think you have lymphoma.   With sprinkles of insurance delays and why you think the doctors are wrong.   Several posts, detailing that various nodes have shrunken.    No one has lymphoma until a biopsy says they have it.    Why operate on assumptions, and never trust the doctors ?

    Max,

    Thank for taking the time to reply. I really appreciate it. Some others Here have mentioned the anxiety clearly running through my posts and my questions, and I've come to the conclusion they're right and you are too. Really, all of it stems from having gone through my entire life healthy and energetic and then beginning to experience a hard crash over the last year and a half or so. 
    Something has definitely gone wrong in my body, and it's noticeable and it's difficult to deal with, but maybe a lot of it IS depression and aging and all that comes with both of those things. 
    I've just been diagnosed with Dermatomyositi, which I think probably explains the fatigue and weakness, and perhaps even the wonky lymph nodes. I'm waiting on a referral to figure out treatment, and since I was diagnosed based on antibody tests, probably a skin biopsy.

      I think I need to stop posting here, and I'm truly sorry if Ive bothered or offended anyone. I thank you all for your help Regardless.