Freaking Out Waiting on Answers

2

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  • po18guy
    po18guy Member Posts: 1,461 Member
    edited January 2021 #22
    If this triggered anxiety...

    It will not go away until you make it go away. If I were you, I would take steps to deal with the anxiety, or you might spend the rtest of your life in doubt. You deserve to live in peace.

  • mranxiety
    mranxiety Member Posts: 17
    po18guy said:

    If this triggered anxiety...

    It will not go away until you make it go away. If I were you, I would take steps to deal with the anxiety, or you might spend the rtest of your life in doubt. You deserve to live in peace.

    I hear you but yes, this did

    I hear you but yes, this did trigger some anxiety.  I came back to see if people with more real world experience than I had any other advice or opinions on logical next steps realizing that I may be overamxious or overanalyzing.   I for sure realize that regardless of the nodes, this situation has absolutely triggered some anxiety probably compounded with a stressful job and the general state of the world these days.   Anyways,  I'm going to follow my docs and my body and try and let these things be for a bit until my next doc appt unless something changes.   Hoping that helps a bit with the anxiety issue as well if I'm not constantly touching them and thinking about them.

  • po18guy
    po18guy Member Posts: 1,461 Member
    edited January 2021 #24
    mranxiety said:

    I hear you but yes, this did

    I hear you but yes, this did trigger some anxiety.  I came back to see if people with more real world experience than I had any other advice or opinions on logical next steps realizing that I may be overamxious or overanalyzing.   I for sure realize that regardless of the nodes, this situation has absolutely triggered some anxiety probably compounded with a stressful job and the general state of the world these days.   Anyways,  I'm going to follow my docs and my body and try and let these things be for a bit until my next doc appt unless something changes.   Hoping that helps a bit with the anxiety issue as well if I'm not constantly touching them and thinking about them.

    1. Your username. Hmmm...

    1. Your username. Hmmm...

    2. "may be overamxious or overanalyzing" Yes.

    3. Ask about cognitive behaviuoral therapy. Drug-free, it is the gold standard in anxiety therapy. It can even be done over the phone.

    4. I have had about 100 actual lymph node/tumors. My wife would occasionally check them, but I would not. They can become anxiety nodes.

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited January 2021 #25
    mranxiety said:

    I hear you but yes, this did

    I hear you but yes, this did trigger some anxiety.  I came back to see if people with more real world experience than I had any other advice or opinions on logical next steps realizing that I may be overamxious or overanalyzing.   I for sure realize that regardless of the nodes, this situation has absolutely triggered some anxiety probably compounded with a stressful job and the general state of the world these days.   Anyways,  I'm going to follow my docs and my body and try and let these things be for a bit until my next doc appt unless something changes.   Hoping that helps a bit with the anxiety issue as well if I'm not constantly touching them and thinking about them.

    one last comment ....

    Anxiety can nudge you to keep following up when you receive false reassurance. If you have lymphoma, which seems unlikely to me, you want it diagnosed at stage 1, the only stage at which indolent follicular is curable. Doctors are very reluctant to say a patient has lymphoma until it is full blown. Many just want to give more antibiotics and have you go away. Be calm but persistent. Don't let anxiety control you, but anxiety evolved to fill a survival need. Its ok to use it. Good luck.

  • mranxiety
    mranxiety Member Posts: 17
    edited January 2021 #26
    ShadyGuy said:

    one last comment ....

    Anxiety can nudge you to keep following up when you receive false reassurance. If you have lymphoma, which seems unlikely to me, you want it diagnosed at stage 1, the only stage at which indolent follicular is curable. Doctors are very reluctant to say a patient has lymphoma until it is full blown. Many just want to give more antibiotics and have you go away. Be calm but persistent. Don't let anxiety control you, but anxiety evolved to fill a survival need. Its ok to use it. Good luck.

    Thanks....my doc has me on a

    Thanks....my doc has me on a 3 month cadence.  He has said if anything changes or if I just can't sleep, he will order the biopsy but he also said that it makes no sense given my current results and situation.   Seems like a catch 22 as I also am not really wanting to get my neck cut open if its unnecessary.  I'll see him in March and gauge next steps then as that will be a full 6 months post scans.  Maybe a follow up US will be a next non invasive step to take a quick look if there have been any changes.

  • PBL
    PBL Member Posts: 366 Member
    You are not alone

    It did not seem as clear in your previous posts as in this last one that you were actually being closely monitored. I will now say that you can safely "forget" about those nodes in between two quarterly visits. You can trust in your doctors' vigilance to take action when they believe it is warranted. Delaying biopsy until then is your best option. Think of your lymph nodes as tinier and more numerous versions of your lungs or kidneys - and now that Shadyguy has brought lymphedema to your attention... Who would have one of those organs removed without giving it some thought?

    Do keep us posted on your future developments -or (hopefully) absence thereof: many people seem to worry about having lymphoma, and although you may think it irrelevant to report on continued negative follow-up, it may help others realize that you can have what looks like lymphoma symptoms, and still not be diagnosed with it... and life goes on.

    Kind regards,

    PBL

  • mranxiety
    mranxiety Member Posts: 17
    edited January 2021 #28
    PBL said:

    You are not alone

    It did not seem as clear in your previous posts as in this last one that you were actually being closely monitored. I will now say that you can safely "forget" about those nodes in between two quarterly visits. You can trust in your doctors' vigilance to take action when they believe it is warranted. Delaying biopsy until then is your best option. Think of your lymph nodes as tinier and more numerous versions of your lungs or kidneys - and now that Shadyguy has brought lymphedema to your attention... Who would have one of those organs removed without giving it some thought?

    Do keep us posted on your future developments -or (hopefully) absence thereof: many people seem to worry about having lymphoma, and although you may think it irrelevant to report on continued negative follow-up, it may help others realize that you can have what looks like lymphoma symptoms, and still not be diagnosed with it... and life goes on.

    Kind regards,

    PBL

    Thanks and absolutely will do

    Thanks and absolutely will do.  I'll follow my ENT and hematologist direction for sure and will check in later.  Thanks again!

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    Please define ....

    "closely monitored". Hopefully its more than just blood work. Myself and Max too had normal blood work up to the time Stage IV (me) and Stage 3 (Max) were diagnosed. Neither of us had palpable nodes either. Good luck. I am outta here.

  • mranxiety
    mranxiety Member Posts: 17
    edited January 2021 #30
    ShadyGuy said:

    Please define ....

    "closely monitored". Hopefully its more than just blood work. Myself and Max too had normal blood work up to the time Stage IV (me) and Stage 3 (Max) were diagnosed. Neither of us had palpable nodes either. Good luck. I am outta here.

    Hi....I had a negative PET/CT

    Hi....I had a negative PET/CT and negative flow cytometry.   He did not want to do an invasive node biopsy if the pet/ct was negative which it was.  So, now they are watching the nodes and me for any change.  Not sure if you knew that or if you did and still think they are being too optimistic with not doing a biopsy.

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited January 2021 #31
    You are doing fine

    I assume that "negative flow cytometry" means no monoclonal cells detected? Thats very positive news. People are different which is as it should be. Myself, because of my personal history, I would need to know why those nodes are enlarged. I would say that if they are not gone in 3 months then further investigation is warranted. Meanwhile, enjoy life. I regret chiming in here and sorry for any distress it may have brought to you. Best of luck. 

  • FingGrrr
    FingGrrr Member Posts: 7
    edited January 2021 #32
    Anxiety

    In the years following my first lymphoma I've eventually learned to appreciate a little swelling here and there as a good thing. It means they're working. I've wasted time worrying about a relapse when it wasn't an issue. I don't mean to say this is the right way to think about it, just that a more positive outlook only helped relieve my anxiety. When the swelling is a problem I think you'll know it. It's good to be aware, or vigilant. If you make a point of checking once a month you'll be ahead of the game and more likely to catch anything early. That said, coming to a place like this you are more likely to read the stories that add to your anxiety. Good luck with the stress and your health. 

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited January 2021 #33
    FingGrrr said:

    Anxiety

    In the years following my first lymphoma I've eventually learned to appreciate a little swelling here and there as a good thing. It means they're working. I've wasted time worrying about a relapse when it wasn't an issue. I don't mean to say this is the right way to think about it, just that a more positive outlook only helped relieve my anxiety. When the swelling is a problem I think you'll know it. It's good to be aware, or vigilant. If you make a point of checking once a month you'll be ahead of the game and more likely to catch anything early. That said, coming to a place like this you are more likely to read the stories that add to your anxiety. Good luck with the stress and your health. 

    Panic?

    I don't think so. Look into it - yes. So far he has no signs of lymphoma so I do not know why the focus is on that. I find it very odd that a PET would be ordered before any other tests. The CDC gives a list of potential causes of persistently swollen nodes. Lymphoma is #6 on the list which is started off by lupus and RA. panic? Hardly - but look into the cause. CDC says persistently swollen nodes are a cause for concern if they persist 3 months or longer. As I said in an earlier post, I would be finding out what is causing this. Hematologist? Only if its cancer which it most likely is not. See an oncologist to eliminate cancer and a rheumatologist to look at other possibilities is what I would do. And in the mean time I would lose no sleep over it.

  • Pwhitefl21
    Pwhitefl21 Member Posts: 15
    edited February 2021 #34
    mranxiety said:

    Thanks and absolutely will do

    Thanks and absolutely will do.  I'll follow my ENT and hematologist direction for sure and will check in later.  Thanks again!

    I understand

    Dear Mranxiety:

    I totally understand what you are going through. I had no symptoms, and my CBC came normal. I had a swollen lymph node in my neck, which has since gone down. They did perform a biopsy when it was swollen and they found some cells that were consistent with low grade Follicular Lymphoma. I recently took a Pet Scan, and they did see some cells where the swelling was, but recognized that it had significantly improved. It did notice some activity in a node near stomach, but no where else. It has not affected any organs.

    Having said that, I have a follow up next week. I know how you are felling, and the unknown is Scary. You will see that at each step, as more information comes, surprisingly the situation becomes less tense as you learn more. Try and keep all the negative thoughts out, and good luck.

  • mranxiety
    mranxiety Member Posts: 17

    I understand

    Dear Mranxiety:

    I totally understand what you are going through. I had no symptoms, and my CBC came normal. I had a swollen lymph node in my neck, which has since gone down. They did perform a biopsy when it was swollen and they found some cells that were consistent with low grade Follicular Lymphoma. I recently took a Pet Scan, and they did see some cells where the swelling was, but recognized that it had significantly improved. It did notice some activity in a node near stomach, but no where else. It has not affected any organs.

    Having said that, I have a follow up next week. I know how you are felling, and the unknown is Scary. You will see that at each step, as more information comes, surprisingly the situation becomes less tense as you learn more. Try and keep all the negative thoughts out, and good luck.

    Thanks.  I had my schedules

    Thanks.  I had my schedules all screwed up and I had a follow up last week.  Hematologist sent me for follow up ultrasound just to check size.  Came back that the nodes have shrunk and that they are not worthy of biopsy.   Still palpable...so, basically nothing I can do but watch them.  Doctor said with clear CT, clear PET and US that shows nothing enlarged by size criteria and normal looking nodes, biopsy is out of the question right now.  He said nothing looks pathological at this time.  A hematologist,  an ENT and 3 radiologists...none of them have suggested biopsy during the whole thing so, I have to trust them.  Basically,  nothing to do but keep an eye on the nodes and if something changes,  then I guess we shall see.  At some point I feel like a hypochondriac with all the tests and docs giving me the clear bill for now.   So, gotta move on.

  • mranxiety
    mranxiety Member Posts: 17
    edited February 2021 #36
    PBL said:

    Hi again!

    Answerin your latest post today...

    Based on what you've told us so far, I assume you've got an appointment scheduled with your hematologist some time in April-May...

    If so, as previously said, you're not alone. Try and live life as usual until that set date. If anything new arises before then, just let your hematologist and/or GP know. If you haven't been given an appointment (which I do not think the most likely of the two options), just head back to your GP's office and update them on what's been going on, and the hematologist will most likely see you without delay.

    Whatever it is, it does not seem to be life-threatening. You are now known to your GP and hematologist. So, keep breathing and working and enjoying life until either the next appointment or something new does happen. Needless to say, you can always come back to this forum for support in the meantime!

    PBL

    Actually...already had the follow up

    Hey...I actually had my schedules all screwed up and just had an appt. I had my schedules all screwed up and I had a follow up last week.  Hematologist sent me for follow up ultrasound just to check size.  Came back that the nodes have shrunk and that they are not worthy of biopsy.   Still palpable...so, basically nothing I can do but watch them.  Doctor said with clear CT, clear PET and US that shows nothing enlarged by size criteria and normal looking nodes, biopsy is out of the question right now.  He said nothing looks pathological at this time.  A hematologist,  an ENT and 3 radiologists...none of them have suggested biopsy during the whole thing so, I have to trust them.  Basically,  nothing to do but keep an eye on the nodes and if something changes,  then I guess we shall see.  At some point I feel like a hypochondriac with all the tests and docs giving me the clear bill for now.   So, gotta move on   

  • PBL
    PBL Member Posts: 366 Member
    edited February 2021 #37
    Hi again!

    Answerin your latest post today...

    Based on what you've told us so far, I assume you've got an appointment scheduled with your hematologist some time in April-May...

    If so, as previously said, you're not alone. Try and live life as usual until that set date. If anything new arises before then, just let your hematologist and/or GP know. If you haven't been given an appointment (which I do not think the most likely of the two options), just head back to your GP's office and update them on what's been going on, and the hematologist will most likely see you without delay.

    Whatever it is, it does not seem to be life-threatening. You are now known to your GP and hematologist. So, keep breathing and working and enjoying life until either the next appointment or something new does happen. Needless to say, you can always come back to this forum for support in the meantime!

    PBL

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    mranxiety said:

    Actually...already had the follow up

    Hey...I actually had my schedules all screwed up and just had an appt. I had my schedules all screwed up and I had a follow up last week.  Hematologist sent me for follow up ultrasound just to check size.  Came back that the nodes have shrunk and that they are not worthy of biopsy.   Still palpable...so, basically nothing I can do but watch them.  Doctor said with clear CT, clear PET and US that shows nothing enlarged by size criteria and normal looking nodes, biopsy is out of the question right now.  He said nothing looks pathological at this time.  A hematologist,  an ENT and 3 radiologists...none of them have suggested biopsy during the whole thing so, I have to trust them.  Basically,  nothing to do but keep an eye on the nodes and if something changes,  then I guess we shall see.  At some point I feel like a hypochondriac with all the tests and docs giving me the clear bill for now.   So, gotta move on   

    Great news!

    i am happy for you!

  • Pwhitefl21
    Pwhitefl21 Member Posts: 15
    mranxiety said:

    Thanks.  I had my schedules

    Thanks.  I had my schedules all screwed up and I had a follow up last week.  Hematologist sent me for follow up ultrasound just to check size.  Came back that the nodes have shrunk and that they are not worthy of biopsy.   Still palpable...so, basically nothing I can do but watch them.  Doctor said with clear CT, clear PET and US that shows nothing enlarged by size criteria and normal looking nodes, biopsy is out of the question right now.  He said nothing looks pathological at this time.  A hematologist,  an ENT and 3 radiologists...none of them have suggested biopsy during the whole thing so, I have to trust them.  Basically,  nothing to do but keep an eye on the nodes and if something changes,  then I guess we shall see.  At some point I feel like a hypochondriac with all the tests and docs giving me the clear bill for now.   So, gotta move on.

    That's great news!

    That's great news!

  • mranxiety
    mranxiety Member Posts: 17
    edited February 2021 #40
    Back to the doc

    Hate to come back but after finally moving on from my small supraclavicular nodes scare, I had this thing pop up a week ago. I am out of town but went to the doc only because of my past history. He says it is NOT a lymph node. Explained my history and he said, he has been doing this awhile and its something muscular, not a node. Prescribed steroids but I'm hesitant to take them as I'd like to see what it does on its own. This is same side as my supraclavicular scare. Any opinions? I was thinking to let it ride another week then see my own ENT when I'm back home but hard to process this is a random coincidence and not a lymph node. Pic: https://drive.google.com/file/d/1LWhi0sTBAOhkzUh11DjMEeeso-s9p2R1/view?usp=drivesdk

  • po18guy
    po18guy Member Posts: 1,461 Member
    edited February 2021 #41
    mranxiety said:

    Back to the doc

    Hate to come back but after finally moving on from my small supraclavicular nodes scare, I had this thing pop up a week ago. I am out of town but went to the doc only because of my past history. He says it is NOT a lymph node. Explained my history and he said, he has been doing this awhile and its something muscular, not a node. Prescribed steroids but I'm hesitant to take them as I'd like to see what it does on its own. This is same side as my supraclavicular scare. Any opinions? I was thinking to let it ride another week then see my own ENT when I'm back home but hard to process this is a random coincidence and not a lymph node. Pic: https://drive.google.com/file/d/1LWhi0sTBAOhkzUh11DjMEeeso-s9p2R1/view?usp=drivesdk

    First...

    1. Follow doctor's advice.

    2. Stop feeling for lunps and bumps! We are made of them.

    3. Follow up on the anxiety.

    There you have it.