Scanxiety

2

Comments

  • todd121
    todd121 Member Posts: 1,448 Member
    edited September 2016 #22

    My oncologist came in almost 1 hour late. Apologized very much for the wait. Then said "Everything looks great. See you in 3 months." I asked about that one lymph node if it hadn't changed. He said no. I was thrilled.

    Left the office elated. Called everybody. They were happy. Had a celebration dinner with my son.

    Then this morning I took a closer look at the detailed parts of the CT scan report. It reported that that lymph node was now 11x10mm. (Last scan was 11x8). Damn. The damn thing grew again. Previous scan was 9x6 I think.

    So I texted my uncle this morning (the retired oncologist). He said to ask my doctor. Emailed my doctor and told him I'm concerned that it's continuing to grow. He said it's small still and that's a small change, but if I wanted he'd refer me to a pulmonologist. So now I'm off to the pulmonologist.

    I asked my uncle if I'm being too picky. He told me to go ahead and see the pulmonologist. He said they are the experts at evaluating mediastinal lymphadenopathy. That's a mouthful, eh?

    It's probably nothing. But if it is, I want the damn thing out. Unfortunately, it's in a very hard to reach location. I'm still not clear that I understand mediastinal and pretracheal....

    Of course it's good that it's just one little spot if that's what it is. Grateful for what is today.

    The thing that's hard is trying to decide who to tell what. My boyfriend is a worrier, so I didn't tell him about the last result. After all, it may be nothing. However, I went and forgot about not telling him and then I mentioned it the other day. He got annoyed I hadn't told him and said to tell him. Then yesterday I told him all was well and this afternoon went back and told him what's going on, he seems annoyed that I told him. Damned if you do. Damned if you don't.

    I have a feeling it's probably best to not mention to people every little twist and turn in my journey. In fact, I've probably overshared in general. I want to be better about keeping things to myself until I'm clear what's going on and when it will affect others, and only then tell them. It's hard to know who to tell what to and when. I want to be considerate. Anybody have any guidelines?

    Peace,

    Todd

  • hardo718
    hardo718 Member Posts: 853 Member
    edited September 2016 #23
    todd121 said:

    My oncologist came in almost 1 hour late. Apologized very much for the wait. Then said "Everything looks great. See you in 3 months." I asked about that one lymph node if it hadn't changed. He said no. I was thrilled.

    Left the office elated. Called everybody. They were happy. Had a celebration dinner with my son.

    Then this morning I took a closer look at the detailed parts of the CT scan report. It reported that that lymph node was now 11x10mm. (Last scan was 11x8). Damn. The damn thing grew again. Previous scan was 9x6 I think.

    So I texted my uncle this morning (the retired oncologist). He said to ask my doctor. Emailed my doctor and told him I'm concerned that it's continuing to grow. He said it's small still and that's a small change, but if I wanted he'd refer me to a pulmonologist. So now I'm off to the pulmonologist.

    I asked my uncle if I'm being too picky. He told me to go ahead and see the pulmonologist. He said they are the experts at evaluating mediastinal lymphadenopathy. That's a mouthful, eh?

    It's probably nothing. But if it is, I want the damn thing out. Unfortunately, it's in a very hard to reach location. I'm still not clear that I understand mediastinal and pretracheal....

    Of course it's good that it's just one little spot if that's what it is. Grateful for what is today.

    The thing that's hard is trying to decide who to tell what. My boyfriend is a worrier, so I didn't tell him about the last result. After all, it may be nothing. However, I went and forgot about not telling him and then I mentioned it the other day. He got annoyed I hadn't told him and said to tell him. Then yesterday I told him all was well and this afternoon went back and told him what's going on, he seems annoyed that I told him. Damned if you do. Damned if you don't.

    I have a feeling it's probably best to not mention to people every little twist and turn in my journey. In fact, I've probably overshared in general. I want to be better about keeping things to myself until I'm clear what's going on and when it will affect others, and only then tell them. It's hard to know who to tell what to and when. I want to be considerate. Anybody have any guidelines?

    Peace,

    Todd

    Son of a gun

    So happy about the good news Todd.  And concerned too because of the slight change in the node.  I'm glad you're going to see a pulmonologist, hopefully it'll give some clarity. 

    I believe the difference between pretracheal and medialstinal is that the pretracheal is just a higher location, if you will.  Medialstinal centered in the chest and pretracheal higher up, near the clavical area.

    I'm sorry to hear about your boyfriend.  I'm guessing it is out of his concern for you & your health that he reacts so strongly to the information.  Relationships can be so difficult sometimes and compound the emotional rollercoaster, just when we need the straight & narrow huh?  You can always reach out to us when you feel the need.

    Hugs,

    Donna~

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    todd121 said:

    My oncologist came in almost 1 hour late. Apologized very much for the wait. Then said "Everything looks great. See you in 3 months." I asked about that one lymph node if it hadn't changed. He said no. I was thrilled.

    Left the office elated. Called everybody. They were happy. Had a celebration dinner with my son.

    Then this morning I took a closer look at the detailed parts of the CT scan report. It reported that that lymph node was now 11x10mm. (Last scan was 11x8). Damn. The damn thing grew again. Previous scan was 9x6 I think.

    So I texted my uncle this morning (the retired oncologist). He said to ask my doctor. Emailed my doctor and told him I'm concerned that it's continuing to grow. He said it's small still and that's a small change, but if I wanted he'd refer me to a pulmonologist. So now I'm off to the pulmonologist.

    I asked my uncle if I'm being too picky. He told me to go ahead and see the pulmonologist. He said they are the experts at evaluating mediastinal lymphadenopathy. That's a mouthful, eh?

    It's probably nothing. But if it is, I want the damn thing out. Unfortunately, it's in a very hard to reach location. I'm still not clear that I understand mediastinal and pretracheal....

    Of course it's good that it's just one little spot if that's what it is. Grateful for what is today.

    The thing that's hard is trying to decide who to tell what. My boyfriend is a worrier, so I didn't tell him about the last result. After all, it may be nothing. However, I went and forgot about not telling him and then I mentioned it the other day. He got annoyed I hadn't told him and said to tell him. Then yesterday I told him all was well and this afternoon went back and told him what's going on, he seems annoyed that I told him. Damned if you do. Damned if you don't.

    I have a feeling it's probably best to not mention to people every little twist and turn in my journey. In fact, I've probably overshared in general. I want to be better about keeping things to myself until I'm clear what's going on and when it will affect others, and only then tell them. It's hard to know who to tell what to and when. I want to be considerate. Anybody have any guidelines?

    Peace,

    Todd

    Deciding who to tell what

    Oh, my gosh, yes. I pretty much (I'm still pre-surgery, possibly watch-and-wait) had a pat answer for folks because what do I really know for sure? I didn't want to play the "Oh, and now they say / think / want..." game with telling folks, only to have them freak for any of several dozen reasons. 

    Well Darn. Just we RCC folks want to try to call our own shots, turns out our friends, family, and loved ones want to call some shots and react in their own ways, too. Spent today doing the first of what will probably be a fair number of, "No, honest, don't be choosing your outfit to wear and covered dish recipe to bring to my wake just yet" damage control, amidst much drama and Angst (some of the latter is my own, oddly not related directly to the RCC). 

    Hang in there. Determining if something is really a crisis before treating it as such is always a good idea. 

    Jerzy GRRRR-L 

  • Allochka
    Allochka Member Posts: 1,060 Member
    Oh, Todd, hope this lymph

    Oh, Todd, hope this lymph node is nothing. Do you have an opportunity to consult with experienced radiologist? They can often distinguish between benign enlarged node and malignant one based on the looks. It is not only the size that matters. There are other factors - whether node's internal structure is preserved, does it light up with contrast, etc. So perhaps a radiologist could explain his impression about this node, whether it is dangerous or benign?

    Also just 2 mm difference could be a measuring error. Recently one member here told that her relative's metastatic nodes increased by 2 cm (not mm) in just one month. 2 mm sound like nothing.

    As for the relationships - I am a caregiver and a worrier too (and a hypochondriac, to my shame). Honestly, I would always want to know what is going on. I think your boyfriend was not pissed off, he was simply very worried about you and sad about continuing uncertainty. I am sure all he wants is to support you, and in order to support you to the fullest he needs to know. 

    Sometimes I myself choose not to tell smth to my elderly mom. I guess I won't be telling smth to our daughter when she is older but still a kid. But I would tell my partner. He is a grown-up person who has the right to know and wants to help. So is your boyfriend.

    Bit this is just my opinion (although the one of caregiver and a worrier :-)), and situations could be very different... Can you talk openly with him about it?

     

     

     

  • todd121
    todd121 Member Posts: 1,448 Member
    edited September 2016 #26
    hardo718 said:

    Son of a gun

    So happy about the good news Todd.  And concerned too because of the slight change in the node.  I'm glad you're going to see a pulmonologist, hopefully it'll give some clarity. 

    I believe the difference between pretracheal and medialstinal is that the pretracheal is just a higher location, if you will.  Medialstinal centered in the chest and pretracheal higher up, near the clavical area.

    I'm sorry to hear about your boyfriend.  I'm guessing it is out of his concern for you & your health that he reacts so strongly to the information.  Relationships can be so difficult sometimes and compound the emotional rollercoaster, just when we need the straight & narrow huh?  You can always reach out to us when you feel the need.

    Hugs,

    Donna~

    They can be so difficult. This makes it harder. My younger son, a few months after my nephrectomy, announced I wasn't there for him when he was young so he's decided not to spend time with me anymore 1-1. We used to meet weekly for lunch or dinner for the past several years.

    I'm sure he has a point. On the other hand I think part of his reaction is maybe unconscious self-protection. I worry he's going to regret it someday. I have to respect his wishes. All attempts to get him to work with me have resulted in more and more anger from him.

    Yeah. I know my boyfriend gets worried. He doesn't understand the medical stuff very well and he's quite superstitious. I think I'm going to go back into just telling him what's going on when it affects him directly, like me getting another surgery or whatever.

    Thanks for the info on mediastinal and pretracheal. I tried to look up online, but I had trouble understanding the definitions.

    Hugs,

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    edited September 2016 #27
    Allochka said:

    Oh, Todd, hope this lymph

    Oh, Todd, hope this lymph node is nothing. Do you have an opportunity to consult with experienced radiologist? They can often distinguish between benign enlarged node and malignant one based on the looks. It is not only the size that matters. There are other factors - whether node's internal structure is preserved, does it light up with contrast, etc. So perhaps a radiologist could explain his impression about this node, whether it is dangerous or benign?

    Also just 2 mm difference could be a measuring error. Recently one member here told that her relative's metastatic nodes increased by 2 cm (not mm) in just one month. 2 mm sound like nothing.

    As for the relationships - I am a caregiver and a worrier too (and a hypochondriac, to my shame). Honestly, I would always want to know what is going on. I think your boyfriend was not pissed off, he was simply very worried about you and sad about continuing uncertainty. I am sure all he wants is to support you, and in order to support you to the fullest he needs to know. 

    Sometimes I myself choose not to tell smth to my elderly mom. I guess I won't be telling smth to our daughter when she is older but still a kid. But I would tell my partner. He is a grown-up person who has the right to know and wants to help. So is your boyfriend.

    Bit this is just my opinion (although the one of caregiver and a worrier :-)), and situations could be very different... Can you talk openly with him about it?

     

     

     

    Node - Contrast

    Unfortunately I didn't have the contrast. My kidney function is a little bit too bad. That might well tell them more. The CT scan just said it was a "moderately" enlarged node and should be followed. Maybe the pulmonologist can figure out more. I was near the threshold to have the contrast so maybe I can have another scan with contrast to have a look.

    I do think I'm going to start holding some info back when things are back and forth/up and down especially from those that seem to be worriers and have a lot on their plates.

    Well, he's hard to talk to about anything serious. He kind of shuts down. So there's that. :)

    Thanks!

    Todd

  • marosa
    marosa Member Posts: 334 Member
    Hey Todd,

    here's wishing that your enlarged lymph node is nothing very important.  Lymph nodes tend to enlarge for many, many reasons that have nothing to do with cancer.   Wishing you well.  You seem to be like me a mellow-cool- high anxiety-prone person... we must try to relax and smell the flowers...or coffee!!!

     Thinking of you. Love your posts!

  • todd121
    todd121 Member Posts: 1,448 Member
    edited September 2016 #29
    marosa said:

    Hey Todd,

    here's wishing that your enlarged lymph node is nothing very important.  Lymph nodes tend to enlarge for many, many reasons that have nothing to do with cancer.   Wishing you well.  You seem to be like me a mellow-cool- high anxiety-prone person... we must try to relax and smell the flowers...or coffee!!!

     Thinking of you. Love your posts!

    Let's smell both!

    I'm doing that more and more. Stop to smell the flowers. I'm literally doing it. It helps so much. :)

    Thank you! Always glad to see your picture and read your posts.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    todd121 said:

    My oncologist came in almost 1 hour late. Apologized very much for the wait. Then said "Everything looks great. See you in 3 months." I asked about that one lymph node if it hadn't changed. He said no. I was thrilled.

    Left the office elated. Called everybody. They were happy. Had a celebration dinner with my son.

    Then this morning I took a closer look at the detailed parts of the CT scan report. It reported that that lymph node was now 11x10mm. (Last scan was 11x8). Damn. The damn thing grew again. Previous scan was 9x6 I think.

    So I texted my uncle this morning (the retired oncologist). He said to ask my doctor. Emailed my doctor and told him I'm concerned that it's continuing to grow. He said it's small still and that's a small change, but if I wanted he'd refer me to a pulmonologist. So now I'm off to the pulmonologist.

    I asked my uncle if I'm being too picky. He told me to go ahead and see the pulmonologist. He said they are the experts at evaluating mediastinal lymphadenopathy. That's a mouthful, eh?

    It's probably nothing. But if it is, I want the damn thing out. Unfortunately, it's in a very hard to reach location. I'm still not clear that I understand mediastinal and pretracheal....

    Of course it's good that it's just one little spot if that's what it is. Grateful for what is today.

    The thing that's hard is trying to decide who to tell what. My boyfriend is a worrier, so I didn't tell him about the last result. After all, it may be nothing. However, I went and forgot about not telling him and then I mentioned it the other day. He got annoyed I hadn't told him and said to tell him. Then yesterday I told him all was well and this afternoon went back and told him what's going on, he seems annoyed that I told him. Damned if you do. Damned if you don't.

    I have a feeling it's probably best to not mention to people every little twist and turn in my journey. In fact, I've probably overshared in general. I want to be better about keeping things to myself until I'm clear what's going on and when it will affect others, and only then tell them. It's hard to know who to tell what to and when. I want to be considerate. Anybody have any guidelines?

    Peace,

    Todd

    Good News - Lymph Node Ok

    I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

    He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

    So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

    Hugs,

    Todd

  • daisybud
    daisybud Member Posts: 541 Member
    edited November 2016 #31
    todd121 said:

    Good News - Lymph Node Ok

    I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

    He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

    So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

    Hugs,

    Todd

    Fantastic news!

    So very happy for you Todd!

    ;) Kim

  • sblairc
    sblairc Member Posts: 585 Member
    edited November 2016 #32
    todd121 said:

    Good News - Lymph Node Ok

    I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

    He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

    So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

    Hugs,

    Todd

    YAY!!!!

    Awesome. 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    todd121 said:

    Good News - Lymph Node Ok

    I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

    He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

    So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

    Hugs,

    Todd

    YAAAY Todd!!

    YAAAY Todd!!

    Thanks for sharing good news!

    Now keep on, keepin on !!!!

    Hugs, Jan

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    todd121 said:

    Good News - Lymph Node Ok

    I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

    He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

    So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

    Hugs,

    Todd

    Excellent

    Keep it up Todd

  • Allochka
    Allochka Member Posts: 1,060 Member
    edited November 2016 #35
    Yes!!!

    Yes!!!

  • stub1969
    stub1969 Member Posts: 966 Member
    todd121 said:

    Good News - Lymph Node Ok

    I saw the pulmonologist last week. His first words were "I disagree with the radiologist. I don't think your lymph node is enlarged at all." He pulled up a scan 2 years ago and showed me that it's about the same as it was then. When I saw how blurry these things are, I realize now how hard it is for them to measure things.

    He chalked it up to measurement error and he also said it can depend on how you lay which way they cut through the noded (which may not be a perfect sphere) and all that can add up to being different each time. I really liked him. He went ahead and gave me an exam- actually he gave me a much better exam than my oncologist usually gives me. Appreciated that.

    So glad to share good news with you guys. I've been reading but not posting. I'm at a loss for words often. I want to encourage and say uplifting things, but I often feel like I'm not sure what to say and I think it's best I keep my mouth shut if I'm not sure. Still, I'm keeping up with newbies, and the rest of us and I'm pulling for you and your loved ones.

    Hugs,

    Todd

    Whew!

    Happy, happy news, Todd.  Congratulations!

    Stub

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited November 2016 #37
    Todd,

    You've done this too long to worry about every little thing. Nothing good comes from it. I would not be here now if I put ANY energy into worrying. Effort needs to be focused on moving forward.

  • foroughsh
    foroughsh Member Posts: 779 Member
    Great news, very happy for

    Great news, very happy for you Todd

    And now it's party time

    Forough

  • todd121
    todd121 Member Posts: 1,448 Member
    edited November 2016 #39
    foxhd said:

    Todd,

    You've done this too long to worry about every little thing. Nothing good comes from it. I would not be here now if I put ANY energy into worrying. Effort needs to be focused on moving forward.

    Thanks Fox

    And you're right. I almost didn't worry about it at all. It might seem like it from my post. I just followed up/through. Thankfully, gratefully, I'm better about it than I have been.

    It's amazing, though, how something sticks with you. My adrenal met was caught early from staying on top of these things. I do still maintain a sense of real fear when my body does things and the doctors can't explain it. Because that's how my cancer was discovered to start with.

    Moving forward, gratitude. Peace. But I will continue to be vigilant! :)

    Todd

     

  • hardo718
    hardo718 Member Posts: 853 Member
    Celebrate!!

    That is wonderful news Todd, I'm so happy for you.

    God Bless, Donna~

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited November 2016 #41
    Super!

    Super! Obviously your "node news is good news."