CT Scan tomorrow!

rescue911chick
rescue911chick Member Posts: 55
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hey everyone, sorry I haven't been posting a lot but I have been checking in often to see how you're all doing & I've been praying for everyone here!

Just wanted to let you guys know that the doctor moved my CT from June 10th to tomorrow morning. I have 4 more enlarged nodes that popped up in the past 10 days that I can feel through the skin, one's already grown quite a bit. My fatigue is ridiculous and I'm waking up drenched most nights. I'm seriously over it & ready for the doctor to just figure it out so we can form a plan of action & get something done. I plan on asking him to be more aggressive (at least with the diagnosing process!) when we follow up next week.  So please pray that I get some solid answers, "good or bad", because doing the "watch & wait" for another 3 months would drive me insane. No matter how hard you try, it's nearly impossible to "live your life" while something like this is going on.

I figured out that I have access to my labs, scans, etc., online. What should I be paying attention to in my bloodwork? A lot of my readings are abnormal or borderline, just wondering which ones are most important to be watching. My MCH & MCHC are low & my RDW is high on my March labs and also on the ones from this morning. (They handed me a printout of my results about 10 minutes after drawing my blood!)  There are a bunch of other things that are "off" but I don't know what's important lol.  I kind of expected my bloodwork to show some reason for me being this wiped out all the time.

Oh, and I learned this past weekend that they were removing asbestos from my work building WHILE I was working! It would've been nice if I knew enough in advance to ask my doctor if I should've avoided work for that process, especially considering my brother died from lung cancer at a very young age. From what I've heard in the past 2 days, there's asbestos everywhere in this building. Awesome.

Anyway, have a great afternoon!!  Pray that this finds all of you well and happy!!

Sherry

 

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    #2
    Hi Sherry

    I have wondered about you. I'm so sorry to hear that you are still in limbo and without a definitive diagnosis. I would not be good at that at all. But it sounds like you have reached your limit and are ready to put your foot down with the doctor. That's good. One thing I have learned is that you absolutely have to be your own advocate. And insist when needed. I've had to do that with the lab, with scheduling, and with my ex-doctor. (Hard for me to do because I tend to be a passive person).

    I wish I could help you with your labs. As of last week, my blood is still wonky and I have been done with chemo for over 2 months. I have learned that blood is much more complicated than I ever fathomed. I have looked up things like MCH, MCHC and RDW, and well as AST and all manner of other things. Even when I look them up, I still don't know so I quit bothering. The aspects of my tests that are trouble to me, the doctor has explained so I don't worry about the others even when my report says they are out of range. If you do want to know, ask and expect an answer you can understand.

    And sorry about the asbestos. If its not one thing its another, right?

    I wish you the best tomorrow with your CT scan and hope you don't have to wait long for the results.

    (((Hugs)))

    Rocquie

    PS--good to hear from youSmile

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Ordeal

    Sherry,

    Sorry you are still slugging away for basic answers.  As I posted to you some time ago, I have never been a believer in "Watch and Wait," and could not tolerate it very well myself .

    As you have also read here before from many others, many people are diagnosed late-stage (like me) with mostly OK blood work; results that did not scream "Lymphoma !" to any doctor.

    Two things that usually do go awry in most patients, however, is Sedementation Rate and LDH.

    Of all markers, the LDH (which has NOTHING to do with similiar-sounding cholesterol results) tracked EXACTLY with my level of cancer activity. LDH is an indicator of "tissue turnover," or essentially a byproduct of tissue decay, and can be caused by more than just cancer, but it is a major marker watched my oncologists in their lymphoma patients.

    Hopefully this is of some value. They are the two things I look for when I go for labs nowadays.

    max

     

  • Unknown
    Unknown
    #4
    I had a similar situation and

    I had a similar situation and finally just went to a surgeon and said "do a biopsy". 

  • Rocquie
    Rocquie Member Posts: 869 Member
    #5
    Max Former Hodgkins Stage 3 said:

    Ordeal

    Sherry,

    Sorry you are still slugging away for basic answers.  As I posted to you some time ago, I have never been a believer in "Watch and Wait," and could not tolerate it very well myself .

    As you have also read here before from many others, many people are diagnosed late-stage (like me) with mostly OK blood work; results that did not scream "Lymphoma !" to any doctor.

    Two things that usually do go awry in most patients, however, is Sedementation Rate and LDH.

    Of all markers, the LDH (which has NOTHING to do with similiar-sounding cholesterol results) tracked EXACTLY with my level of cancer activity. LDH is an indicator of "tissue turnover," or essentially a byproduct of tissue decay, and can be caused by more than just cancer, but it is a major marker watched my oncologists in their lymphoma patients.

    Hopefully this is of some value. They are the two things I look for when I go for labs nowadays.

    max

     

    Great answer, Max

    And I would like to mention that all my blood tests were normal prior to chemo. 

  • illead
    illead Member Posts: 884 Member
    #6
    unknown said:

    I had a similar situation and

    I had a similar situation and finally just went to a surgeon and said "do a biopsy". 

    Finally

    Hi Sherry,

         I wish you the best tomorrow.  I have to say that I just don't quite get it.  I cannot believe you have had to wait this long.  Is your doctor an oncologist or your family doctor, I have forgotten if you said.  You have been one patient woman and always positive, I truly commend you for that.  I do understand the Watch and Wait with Lymphoma (sometimes) but in your case, what have they been watching and waiting?  Doesn't somebody need to know that?  With no diagnosis, what's the point? I know your test is tomorrow so that's good but I would want some answers about the laxness of their concern.  If it were me I would be firing someone.  I may be wrong but with your symptoms etc. it appears someone has dropped the ball.  Usually in Lymphoma, timing and staging is not a real issue but to put you through the worry for as long as they have, I believe is totally unprofessional.  I'm sorry but I have been stewing about this all day and finally got the time to write even though it is really late.  My best for you tomorrow and give emYell  Becky

  • rescue911chick
    rescue911chick Member Posts: 55
    #7
    Follow Up Today

    Just wanted to touch base & let you all know my follow up is this afternoon after work, I should be getting the results from my CT then. I will let you guys know today or tomorrow what I find out. Please pray for my doctor, because if he says he wants to wait another 3 months I might lose it on him haha. Just kidding, of course!!  Just praying for some answers and maybe a plan of action that doesn't involve more waiting. Hope you all have a great day!!

  • illead
    illead Member Posts: 884 Member
    #8
    rescue911chick said:

    Follow Up Today

    Just wanted to touch base & let you all know my follow up is this afternoon after work, I should be getting the results from my CT then. I will let you guys know today or tomorrow what I find out. Please pray for my doctor, because if he says he wants to wait another 3 months I might lose it on him haha. Just kidding, of course!!  Just praying for some answers and maybe a plan of action that doesn't involve more waiting. Hope you all have a great day!!

    Tough day at work

    Try to keep your mind on your work and hopefully the day will go by fast.  Know you must be stressed, you want to hear then you don't.  We'll be thinking of you today and anxious too to hear.  Becky

  • Rocquie
    Rocquie Member Posts: 869 Member
    #9
    rescue911chick said:

    Follow Up Today

    Just wanted to touch base & let you all know my follow up is this afternoon after work, I should be getting the results from my CT then. I will let you guys know today or tomorrow what I find out. Please pray for my doctor, because if he says he wants to wait another 3 months I might lose it on him haha. Just kidding, of course!!  Just praying for some answers and maybe a plan of action that doesn't involve more waiting. Hope you all have a great day!!

    Sherry

    I have wondered about you. I thought since you had not posted that your scan was clean and revealed that you definately did not have lymphoma. I never dreamed that you would be waiting for results of a CT scan more than a week later.  I have always gotten my results right away, usually in about 2 hours. I can understand waiting for cultures and biopsies. But a CT scan? Frankly, I think all this waiting you have been through is rather cruel.  Surely, if the news was not good you would have heard something??

    Prayers and (((Hugs)))

    Rocquie

     

  • jerzpilot
    jerzpilot Member Posts: 39
    #10
    Wil be preaying for you

    Wil be preaying for you Sheryl that you CT Scan comes back clean. If you're not happy with the resulst or just makes you wait longer, you can always get a second opinion somewhere else. I am glad I got a second opinion when first diagnosed since i was miss diagnosed originally. 

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