CT Scan Results

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

So I'm still in limbo, kind of. The CT scan was compared with my PET scan from Feb and all of the nodes that were "hypermetabolic & likely malignant in nature" are still enlarged. They haven't grown, so that's a good thing right? But they haven't gone away, so whatever's going on is less likely some random unknown virus since it's been almost 4 months. I assume anyway.

There are a few new things in the report that concern me, & he didn't tell me about them so I couldn't ask him to explain. (I had to read it online in my "see your chart" account) First, it says "there is bilateral hilar soft tissue thickening seen". What the heck does that mean? Then it says that my right ovary is still "prominent" (the one that was hypermetabolic on my PET but that the ultrasound said was ok).  There's a right external iliac lymph node that's enlarged now, that wasn't mentioned on my previous scans. And there's a subpleural left lobe nodule that wasn't seen in February. (the spots in Feb were on my right lung) Several aorticopulmonary nodes too, another thing not mentioned on my PET results. Seems like a lot to me, but I'm no doctor.

At first he said we'd just wait 4 months & do the scan again to see if they've changed. Be careful what you wish for right? I didn't want to hear him say wait 3 months & he didn't lol. I asked him if we should be concerned about all of the "stuff" that's going on around my lungs since my 38 year old brother died less than a year ago from lung cancer. He said no, but I was thinking maybe I should see a pulmonologist if for no other reason than to ease my mind. My brother's symptoms were misdiagnosed for 4 months, by the time they figured it out it had spread to his brain & he was gone 6 months later. I know my risk factors are low (he was a smoker, I've never smoked once) but it's still a lot to have on my mind regardless. Not to mention how much I worry about my parents who already lost their son. I want answers for them just as much as I want them for myself.

I asked him how I'm supposed to deal with this fatigue for another 4 months, so he decided to order a bunch of bloodwork (10 vials of blood!) & we're going to review the results next Friday.  He also said we could do a bone marrow biopsy. So I feel better knowing we're doing something, kind of, but it's sad that I'm hoping something shows up so that I don't have to wait til September. I feel like my life is on hold in the meantime, at least parts of it. Can't exactly go out on a date with someone when my health is up in the air, so to speak. I know this sounds dumb to those of you going through hell right now, I'm the type of person that likes to deal with something head on, take care of it, and move on from it. Limbo does not work well for me.

Thank you ALL for all of the advice & support you have given so far. I try to reply back to every comment, but if it gets busy here at work I don't get the chance to. I promise that if I get a clean bill of health I won't disappear without letting everyone know first. I don't post a lot yet because I'm still so new to this & I don't feel like I have much to contribute. I do keep up with everyone's posts & watch to see how everyone is doing. You guys are all awesome & I'm thankful to have found you on here :)

I'm sorry this is so long, and if it jumps around blame it on my job since I was multitasking while I wrote this :)

Comments

  • jimwins
    jimwins Member Posts: 2,107
    #2
    Hi rescue

    Gosh, there was so much in your post :).  I'll address what comes to mind but understand I still have chemo brain at times - LOL.   

    1)  The experts who report on scans and tests often include observations that may not be a problem.  Try not to drive yourself crazy with that.  Make a list and ask your doctor or someone you trust on your medical team.  Though researching it yourself might yield some fruit, you may not know how to interpret it and it could add to the insanity :).

    2)  I'm sorry you are still in limbo and having issues with fatigue.  Hopefully your doctor will learn more and be able to help with the blood work.

    3)  I lost my youngest sister suddenly about two months after I finished chemo (Oct. 2011).  I'm still dealing with that and I miss her dearly.  She was such a support to me and now, she's gone.  My sympathies in the loss of your brother.

    4)  There are no strict rules or judgements here.  You can rave, rant, support, make us laugh, make us cry - pretty much anything goes (that's allowed by the site).  Just don't pull your hair out!  Too many of us have or are losing it to chemo ;).  You are never a burden and support comes in so many ways - you don't have to be any kind of expert.  Sometimes just offering a sympathetic ear, kindness, humor and warm hugs is all that is needed - and that is free :). If you don't feel up to offereing support, that's okay too - not a requirement here.  

    With all that being said, I'm sending you big warm hugs and a "hang in there"!

    Jim

     

  • illead
    illead Member Posts: 884 Member
    #3
    Well........

    ........what to say?  I'm glad it wasn't horrible news, but I understand totally how you don't want bad news but there just seems to be more going on.  I think the blood tests are a good thing and with all those vials taken, I think they are going to do some extensive ones.  Then if there is a need with those results, that is probably when they will do the bone marrow biopsy.  If I were you I would get a copy of your blood tests (you have that right),  I don't understand why you have to wait 3 months to find out, he must be a slow readerLaughing  What bothers me the most is the night sweats.  Are they full fleged night sweats?  When Bill had them, he literally soaked the bed and his pillow every night (not fun).  I think something that may help you through this waiting though is that even IF it is lymphoma, if it were really bad, they would probably know that by now.  I am no expert though and could be totally wrong about that, someone else may have some better sage advice.  Don't worry about not posting so much, I just would like to see you able to get on with your life, but please do let us know what they find out, we are all concerned.....now go on a date! 

    Hang in there Chickie, Becky

  • rescue911chick
    rescue911chick Member Posts: 55
    #4
    illead said:

    Well........

    ........what to say?  I'm glad it wasn't horrible news, but I understand totally how you don't want bad news but there just seems to be more going on.  I think the blood tests are a good thing and with all those vials taken, I think they are going to do some extensive ones.  Then if there is a need with those results, that is probably when they will do the bone marrow biopsy.  If I were you I would get a copy of your blood tests (you have that right),  I don't understand why you have to wait 3 months to find out, he must be a slow readerLaughing  What bothers me the most is the night sweats.  Are they full fleged night sweats?  When Bill had them, he literally soaked the bed and his pillow every night (not fun).  I think something that may help you through this waiting though is that even IF it is lymphoma, if it were really bad, they would probably know that by now.  I am no expert though and could be totally wrong about that, someone else may have some better sage advice.  Don't worry about not posting so much, I just would like to see you able to get on with your life, but please do let us know what they find out, we are all concerned.....now go on a date! 

    Hang in there Chickie, Becky

    Thanks Becky!!

    The 4 months waiting period is to do another CT, the blood work appointment is next Friday :) All of my records are online so I can access those, the blood work should pop up in there in a few days so I'll probably know those results before my appointment.

    The night sweats are rotten! I was soaked last time, I had to use a towel to dry off & that's pretty nasty. I pray that's as bad as it gets! They don't happen every night but definitely more nights than not. Can anything else cause those? (And don't say menopause, I'm trying to convince myself I'm too young for that yet haha)

  • Rocquie
    Rocquie Member Posts: 869 Member
    #5
    Hi Sherry

    Thanks for keeping us posted. I think Jim, as usual, has given some very good "advice".

    I really relate to what you said about your parents already losing a child. Since my younger brother died in an accident several years ago (he was the beloved youngest child and everyone in the family's favorite) I have seen the devastation in my parents. My Mama and Daddy are in their 80's now and the first thing I thought of when I was diagnosed. More than anything, I do not want them to have to go through that pain again. 

    About you and your health, it sounds like your doctor is being very thorough? I don't know if you believe in, or have considered any kind of alternative health care? Perhaps you could address the tiredness and night sweats in another way and see what happens?

    I will continue to wish you luck (and peace of mind) with your health issues. Keep us posted when you can, OK?

    (((Hug Sherry)))

    Rocquie

     

     

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

    Hi Sherry

    Thanks for keeping us posted. I think Jim, as usual, has given some very good "advice".

    I really relate to what you said about your parents already losing a child. Since my younger brother died in an accident several years ago (he was the beloved youngest child and everyone in the family's favorite) I have seen the devastation in my parents. My Mama and Daddy are in their 80's now and the first thing I thought of when I was diagnosed. More than anything, I do not want them to have to go through that pain again. 

    About you and your health, it sounds like your doctor is being very thorough? I don't know if you believe in, or have considered any kind of alternative health care? Perhaps you could address the tiredness and night sweats in another way and see what happens?

    I will continue to wish you luck (and peace of mind) with your health issues. Keep us posted when you can, OK?

    (((Hug Sherry)))

    Rocquie

     

     

    oops

    Sorry, I did get the next doctor visit wrong.  I can't blame it on chemo tho just have to face the old age thing.  I don't know about anything else night sweats could be symptoms for.  I was going to suggest menopause actually.  Think it's called peri menopause.  I started having hot flashes in my 30's, maybe twice a year or so but not full bore sweats, more from the inside.  They increased a little as I got older and now that I am through menopause I have recently been getting them again at night. They're still not drenching tho (but maybe that's just me).  I just don't know but it still seems odd that you would get them for no reason when they are a very obvious symptom for lymphoma.  I just wish you weren't in such limbo land.  Becky 

  • rescue911chick
    rescue911chick Member Posts: 55
    #7
    jimwins said:

    Hi rescue

    Gosh, there was so much in your post :).  I'll address what comes to mind but understand I still have chemo brain at times - LOL.   

    1)  The experts who report on scans and tests often include observations that may not be a problem.  Try not to drive yourself crazy with that.  Make a list and ask your doctor or someone you trust on your medical team.  Though researching it yourself might yield some fruit, you may not know how to interpret it and it could add to the insanity :).

    2)  I'm sorry you are still in limbo and having issues with fatigue.  Hopefully your doctor will learn more and be able to help with the blood work.

    3)  I lost my youngest sister suddenly about two months after I finished chemo (Oct. 2011).  I'm still dealing with that and I miss her dearly.  She was such a support to me and now, she's gone.  My sympathies in the loss of your brother.

    4)  There are no strict rules or judgements here.  You can rave, rant, support, make us laugh, make us cry - pretty much anything goes (that's allowed by the site).  Just don't pull your hair out!  Too many of us have or are losing it to chemo ;).  You are never a burden and support comes in so many ways - you don't have to be any kind of expert.  Sometimes just offering a sympathetic ear, kindness, humor and warm hugs is all that is needed - and that is free :). If you don't feel up to offereing support, that's okay too - not a requirement here.  

    With all that being said, I'm sending you big warm hugs and a "hang in there"!

    Jim

     

    HUGS TO ALL

    Work has been ridiculously busy today and I couldn't find time to reply to you guys. My shift is over in about 10 minutes, so I will try to write tomorrow or Saturday. Have a great evening!!

    My youngest "graduates" 8th grade tomorrow :(

  • rescue911chick
    rescue911chick Member Posts: 55
    #8
    Ok so....

    I'm a couple of days late lol. I'll reply to all of you in this one post :)

     

    Jim: I love your sense of humor! I promise not to pull my hair out. It's in bad need of a cut and I won't do it just yet. Just in case...  The fatigue kicked itself up a notch & I feel like the life has drained from me. Like someone cut my "energy vein" and it bled OUT. Not good. Dizziness and shakiness decided to join in too. So I've been dealing with that for 3 days now. Not fun but I didn't know what to do about it so I'm waiting to call the doctor's office tomorrow.

    I'm sorry about your sister. It's been almost a year since my brother died and I don't see it getting better at least not anytime soon.

     

    Rocquie:  You're right, Jim's a great advice giver!  I'm sorry for the loss of your brother. It's so sad to think about what our parents must have felt (and still feel) outliving their own child. Mothers day was rough for me, because all I thought about was it being my mom's first one with one less child. So sad.

    My doctor is being a little more thorough now because I'm a pita haha. I also think I'm going to call the Mayo Clinic in Jax and see if they'd look over my files too. Like many of you have said, a 2nd opinion doesn't hurt and I know it will help me relax a little better if they say the same thing my doctor says. Plus another perspective may bring different ideas & different tests. So I'm calling them tomorrow & hoping to go in a few weeks when my work schedule would allow it. I wouldn't mind trying the alternative health care, my oldest son actually works in that field. I just need to know what's causing all of this first. It probably sounds silly, but if I have lymphoma (or any other cancer) that's an important piece of medical history my kids & grandkids will need to know.

     


    Becky:  I have to see a gynecologist (yay...lol just kidding) soon for that ovary, so I will ask if she thinks my night sweats could be pre menopausal. Yikes I feel like 41 is too young for that! I guess the sweats could be caused by a problem with my ovary if that's causing some type of hormone imbalance. But that's just a guess, so we'll see.

     


    Hope you are all having a great weekend!  Take care of yourselves, and THANK YOU sincerely from the bottom of my heart.

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