Biopsy this next week

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  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #22
    GGc0ok said:

    FLmama

    Hi FLmama

    been checking the boards to see if you've added any updates.  Thinking about you. I know you said you were going to have your scans. Hopefully you've had that done. 
    Sending you my positive thoughts and prayers.  We got this!!

    Hugs ? 

    GG

    Hi GG!

    I appreciate your positive vibes- I feel them! Okay so I am cautiously optomistic about this...

    Had scans of neck, chest, and abd/pelvis done Tuesday and I just checked the patient portal never really expecting to see my results posted but there they were!

    Basically, chest had nothing. There are nodes in my neck, abd/pelvis and bilateral groin, but they are all measuring ~1cm and each report said "nonspecific. Patient may be followed clinically. Otherwise unremarkable."

    Is it me or does this sound like very good news?? I cried my eyes out but before I actually celebrate, I need to see my oncologist Monday morning... I was dreading that appointment but now I am looking forward to it! On the other hand, if not lymphoma, I can't help but wonder what the heck is going on with me. Blood work looked normal except for an elevated reticulocyte count, but I am anemic so that makes sense. I really just don't know what to make sense of this. On the other hand I do not know what "bad" scan results would say... I think I need to stay positive and wait til Monday.

    How are you doing processing your dx? Feeling good? You've been on my mind as well for sure.

    Betwee the election and health concern, I have not slept near enough this week. Time to put my head on my pillow. HUGS XOXO

  • GGc0ok
    GGc0ok Member Posts: 54 Member
    edited November 2020 #23
    FLmama

    Hi FLmama,

    that is the best news, I'm so so happy for you.  It all sounds very positive to me.  My Pet scan is scheduled for the 17th. Then the 18th oncologist appointment.  I've shared my news with my next door neighbors.  I cried when telling them but I brushed away the tears and told them all the positives.  I'm feeling pretty good.  Energy level getting better every day. I actually ran a couple errands yesterday and cleaned up our back patio a bit. 
    I've lost 8 lbs but it's holding.  No fever or drenching night sweats. 
    For you on Monday I'll be waiting for your oncologist diagnosis. Which sounds to be that all is good.  
    Sleep does wonders. Have some Chamomile tea try to calm yourself and distress. 
    Watch some Schitz Creek and have a good laugh 

    We're warriors together

    love GG ?

  • po18guy
    po18guy Member Posts: 1,323 Member
    edited November 2020 #24

    Similar situation

    I had swollen lymph nodes everywhere including groin, severe exhaustion, low grade fever, no appetitie, night sweats and weight loss. Felt so awful went to ER. Blood work came back low white blood count, neutropenic. They did a CAT scan with dye of pelvis found nothing sent me home told me to see an hematolgist. He sent me for a chest, pelvic, abdomen CAT scan with dye - came back multiple enlarged - particularly axillary nodes one 18mm in size - which is not huge. Had mammogram, and sonogram and they found nodes with thickened cortex so did a needle core biopsy - 3 punches. Came back clear. But I'm still tired, weak and feel "heavy" at night (hard to turn over so tired). Still not hungry. They are making me come back in 6 weeks for more blood work and consider taking out a node to look at the whole thing. Dr's seem to be praying attention but not able to figure out what's wrong

    .

    Sorry to hear this

    Last I checked, there were 68,069 known human illnesses and conditions. There are many times that number which are unknown to medical science. You can see the difficulty in making a diagnosis. Just know that of those 68,000+ only 125 are cancer types. Our immune systems are unbelievably complex and there at least 80 auto-immune conditions that can mimic lymphoma. Many conditions are nevrer diagnosed, but end up resolving on their own. All we can do is be patient during the diagnostic process.

  • po18guy
    po18guy Member Posts: 1,323 Member
    edited November 2020 #25
    GGc0ok said:

    Tomorrow’s appointment

    It's been a week since my biopsy. My Oncologist appointment is tomorrow morning. I'm anxious to get my results.  I'm not scared I just want this to have a diagnosis. Whatever it is I want treatment ASAP.  I just need maybe a pep talk or words of wisdom. From what I've read on this forum so many here have kind hearts with so much knowledge. 
    Send me positive thoughts and for those with faith a prayer wouldn't hurt. 
    Thank You

    GG

    Well...

    I have heard it said, and believe it, that we should keep very busy with life at such times. Finishing up current or older projects, resuming a hobby, or even taking a new one up. Most such conditions are not cancerous, but the frustrating part is that many of them cannot be diagnosed as they are unknown to medical science. Thus, the symptoms are treated and we just bear with it until it either is identified or resolves on its own. 

    If pathology arrives quickly, that is also a doubled-edged sword. It might be correct, or they might have missed something. As Max found out, when pathology takes an exteneded period of time, or must be reviewed by a different lab, it can be good news.  

  • GGc0ok
    GGc0ok Member Posts: 54 Member
    edited November 2020 #26
    po18guy said:

    Well...

    I have heard it said, and believe it, that we should keep very busy with life at such times. Finishing up current or older projects, resuming a hobby, or even taking a new one up. Most such conditions are not cancerous, but the frustrating part is that many of them cannot be diagnosed as they are unknown to medical science. Thus, the symptoms are treated and we just bear with it until it either is identified or resolves on its own. 

    If pathology arrives quickly, that is also a doubled-edged sword. It might be correct, or they might have missed something. As Max found out, when pathology takes an exteneded period of time, or must be reviewed by a different lab, it can be good news.  

    po1

    po1

    your so right and I appreciate your words. I've been getting back my energy and living my life. Getting into my daily routine. I did find out mine is CLL/SLL. I'll have Pet CT done soon.  Doctors words " I'm not going to tell you not to worry, because you probably will, but don't lose sleep over it". There are positives and that's what I'm concentrating on. 
    GG

  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #27
    GGc0ok said:

    FLmama

    Hi FLmama,

    that is the best news, I'm so so happy for you.  It all sounds very positive to me.  My Pet scan is scheduled for the 17th. Then the 18th oncologist appointment.  I've shared my news with my next door neighbors.  I cried when telling them but I brushed away the tears and told them all the positives.  I'm feeling pretty good.  Energy level getting better every day. I actually ran a couple errands yesterday and cleaned up our back patio a bit. 
    I've lost 8 lbs but it's holding.  No fever or drenching night sweats. 
    For you on Monday I'll be waiting for your oncologist diagnosis. Which sounds to be that all is good.  
    Sleep does wonders. Have some Chamomile tea try to calm yourself and distress. 
    Watch some Schitz Creek and have a good laugh 

    We're warriors together

    love GG ?

    Xena

    That should be your warrior nickname-- strong and powerful. I like it!

    I'm so glad you're feeling well and really happy you shared with your neighbors-- I hope they are a source of support and comfort for you. Sounds like you are energized- good for you! And I had just recently found Schitt's Creek myself- what a great show! Much needed laughter :) 

    I feel so lucky to have my sisters to talk to, even though they are not local. I told my brother what's going on with me yesterday and it felt so strange to hear the words coming out of my mouth. Sigh. I keep praying the next bit of news I share will be positive. Dying to talk to my mom about but don't want to worry her unnecessarily. 

    Enjoy the rest of your weekend- hopefully you are taking care of yourself.

    Hugs to you XO

  • GGc0ok
    GGc0ok Member Posts: 54 Member
    edited November 2020 #28
    GGX

    thank you sweet warrior for the Nick name I'll use the X in your honor ?

    when I heard the words coming out of my mouth I actually couldn't finish saying Cancer I broke down then momentarily.  I have three daughters. Two of my girls are supportive and loving. One of my girls wants nothing to do with me, over the last 5-6 years. Lives right here in the same city.  One of those family falling out. She is the one I was most closest to. It broke my heart still does.  But I pray for her every night as well as my 3 grandchildren her children. 
    Like you I want to talk to my Mom, only my Mom passed away in 2006.  I long to hug her hold her hand , I want to here myself say "Hi Mom".  If I were you I'd talk to your Mom. I'm sure she'll have a hug for you and much more. 
    In my prayers tonight I'll pray for good news, anything positive for both of us. 
    Were watching the last episode of Queens Gambit on Netflix. It's different but it's kept our interest. About an orphan thats a chess player.  Takes us from her childhood to adulthood.  Very Good

    You have a good weekend as well.  Hopefully your taking care as well

    Hugs Goodnight

    GGX

  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #29
    GGc0ok said:

    GGX


    thank you sweet warrior for the Nick name I'll use the X in your honor ?

    when I heard the words coming out of my mouth I actually couldn't finish saying Cancer I broke down then momentarily.  I have three daughters. Two of my girls are supportive and loving. One of my girls wants nothing to do with me, over the last 5-6 years. Lives right here in the same city.  One of those family falling out. She is the one I was most closest to. It broke my heart still does.  But I pray for her every night as well as my 3 grandchildren her children. 
    Like you I want to talk to my Mom, only my Mom passed away in 2006.  I long to hug her hold her hand , I want to here myself say "Hi Mom".  If I were you I'd talk to your Mom. I'm sure she'll have a hug for you and much more. 
    In my prayers tonight I'll pray for good news, anything positive for both of us. 
    Were watching the last episode of Queens Gambit on Netflix. It's different but it's kept our interest. About an orphan thats a chess player.  Takes us from her childhood to adulthood.  Very Good

    You have a good weekend as well.  Hopefully your taking care as well

    Hugs Goodnight

    GGX

    GGX

    Hey my warrior sista, 

    I'm so sorry about your daughter-- I cant imagine how painful that must be. I pray that I will always be close with my kids but it's a 2 way street for sure. Is there no way to repair? I hope someday it will all be mended, especially since there are grandkids involved. I will call my mom tomorrow now that I have more of a complete picture to share with her. She is in NY and I miss her every day-- I lost my dad 2 years ago and I know I have been clinging to her a little more tightly ever since. 

    So I just posted this in my original post in response to someone else but here is my update:

    I was told today for the second time since all of this started that I am an enigma (great.) I saw my oncologist yesterday and she reviewed the CT scans-- nodules everywhere but my chest-- measuring up to 1.2cm. Apparently over 1cm may indicate malignancy. So she wasn't necessarily impressed-- said we could do a PET scan but she wasn't sure it's necessary (so I reminded her of the $1000 copay for that and if I need it okay but if I don't, LET'S SKIP IT!) Same for biopsy, she said they're all small enough she didn't think it's warranted just yet. SO for now we are "actively monitoring"-- she wants to see me every 3 months unless something changes. She said she cannot rule it out becaus it may be indolent lymphoma and we need to wait and see. Not crazy about that-- I don't get the big sigh of relief of it being ruled out, but I can't be proactive and treat it. Mixed emotions.

    Today I saw a GI doc because I am 51 and need a colonoscopy, and honeslty I have always had GI issues. I of course told her about this recent lymphoma concern but also mentioned that I have chronic fatigue and have had chronic anemia for my entire adult life. Had a fascinating conversation-- she said this may all be Celiac disease! Anemia and SWOLLEN NODES can all be related... I am a nurse and had NO idea-- never heard of this before. Hard to believe that no one ever suggested this simple blood work for me before. I cannot wait to get it done! (Sidebar-- there is a link between celiac and lymphoma. sigh. No hiding from this!) But she did say "I really hope this is all realted to celiac. I can fix that."  I am keeping my fingers crossed.

    This has all been soooo stressful, but she was so wonderful today- she looked like she wanted to hug me and she kept saying "I feel so bad for all you've been going through." I had to pinch my finger not to cry. It felt good for someone to acknowledge how challenging this truly is. 

    I haven't heard of Queens Gambit but I will check it out-- always looking for a good show. I just watched Dr. Foster on Netflix which was unexpected but enjoyable :)

    Will be looking forward to hearing from you again... 

    {{Hugs to you}} 

  • Samiam1114
    Samiam1114 Member Posts: 17
    edited November 2020 #30
    FL Mama

    That could be great news! When are you getting the blood work done for that? Hoping it's nothing serious!

  • GGc0ok
    GGc0ok Member Posts: 54 Member
    edited November 2020 #31
    FLmama said:

    GGX

    Hey my warrior sista, 

    I'm so sorry about your daughter-- I cant imagine how painful that must be. I pray that I will always be close with my kids but it's a 2 way street for sure. Is there no way to repair? I hope someday it will all be mended, especially since there are grandkids involved. I will call my mom tomorrow now that I have more of a complete picture to share with her. She is in NY and I miss her every day-- I lost my dad 2 years ago and I know I have been clinging to her a little more tightly ever since. 

    So I just posted this in my original post in response to someone else but here is my update:

    I was told today for the second time since all of this started that I am an enigma (great.) I saw my oncologist yesterday and she reviewed the CT scans-- nodules everywhere but my chest-- measuring up to 1.2cm. Apparently over 1cm may indicate malignancy. So she wasn't necessarily impressed-- said we could do a PET scan but she wasn't sure it's necessary (so I reminded her of the $1000 copay for that and if I need it okay but if I don't, LET'S SKIP IT!) Same for biopsy, she said they're all small enough she didn't think it's warranted just yet. SO for now we are "actively monitoring"-- she wants to see me every 3 months unless something changes. She said she cannot rule it out becaus it may be indolent lymphoma and we need to wait and see. Not crazy about that-- I don't get the big sigh of relief of it being ruled out, but I can't be proactive and treat it. Mixed emotions.

    Today I saw a GI doc because I am 51 and need a colonoscopy, and honeslty I have always had GI issues. I of course told her about this recent lymphoma concern but also mentioned that I have chronic fatigue and have had chronic anemia for my entire adult life. Had a fascinating conversation-- she said this may all be Celiac disease! Anemia and SWOLLEN NODES can all be related... I am a nurse and had NO idea-- never heard of this before. Hard to believe that no one ever suggested this simple blood work for me before. I cannot wait to get it done! (Sidebar-- there is a link between celiac and lymphoma. sigh. No hiding from this!) But she did say "I really hope this is all realted to celiac. I can fix that."  I am keeping my fingers crossed.

    This has all been soooo stressful, but she was so wonderful today- she looked like she wanted to hug me and she kept saying "I feel so bad for all you've been going through." I had to pinch my finger not to cry. It felt good for someone to acknowledge how challenging this truly is. 

    I haven't heard of Queens Gambit but I will check it out-- always looking for a good show. I just watched Dr. Foster on Netflix which was unexpected but enjoyable :)

    Will be looking forward to hearing from you again... 

    {{Hugs to you}} 

    FLmama

    Hi my warrior sis,

    That all sounds so positive, really good.  Let's pray this is all allergies or celiac I mean I don't wish ailments on anyone but to have that verses the L's would be a deep breath changer. 
    Awww I'm sure she wanted to hug you. Those times I usually break down myself. I'll have to remember pinching myself. 
    Sweetie my oldest daughter is 51.  You could actually be my daughter. That's funny the years go by way too fast without us even realizing it. 
    Your post is positive and uplifting. My prayers and positive thoughts ongoing.  
    I was so glad to see your updated post.

    Thank you for your kind words about my daughter   
    We finished Queens Gambit,,, then watched Mile 22 movie both 5*

    We Got This!!

    Hugs 

    GGX

  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #32

    FL Mama

    That could be great news! When are you getting the blood work done for that? Hoping it's nothing serious!

    Me too!

    HI Sam,

    I had the bloodwork done earlier today. I am PRAYING that it is celiac-- I've never been more excited to give up bread and pasta... I had pizza yesterday and two hours later I had such terrible stomach pains...  really has me thinking. The tech said results in about 72 hours... Fingers crossed!

     

    How are YOU?

  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #33
    GGc0ok said:

    FLmama

    Hi my warrior sis,

    That all sounds so positive, really good.  Let's pray this is all allergies or celiac I mean I don't wish ailments on anyone but to have that verses the L's would be a deep breath changer. 
    Awww I'm sure she wanted to hug you. Those times I usually break down myself. I'll have to remember pinching myself. 
    Sweetie my oldest daughter is 51.  You could actually be my daughter. That's funny the years go by way too fast without us even realizing it. 
    Your post is positive and uplifting. My prayers and positive thoughts ongoing.  
    I was so glad to see your updated post.

    Thank you for your kind words about my daughter   
    We finished Queens Gambit,,, then watched Mile 22 movie both 5*

    We Got This!!

    Hugs 

    GGX

    GGX

    I don't mind you wishing celiac on me, LOL! I'll take it...

    I honestly have been feeling better emotionally. Got to have hope, right? I haven't eaten so well in the past few days and have had an accompanying upset stomach- so it really has me thinking. Don't really want to change my diet but will absolutelu do whatever I need to in order to feel better. For example, I have been anemic- and quite frankly- TIRED for most of my adult life...  so while these symptoms fit the clinical picture of L, it may make more sense that it is a chronic issue like Celiac. Trying to not think too much about it though until I get my results back. 

    Regarding your daughter-- I just know there is nothing more special than a mother-child relationship. We all have our issues and family cr*p, myself included, but I will remain hopeful that you will work it out. She sure is missing out on time with her STRONG and inspirational mama.  For that, my heart aches for you, and for her too.

    I will start Queens Gambit this weekend. Nothing better to do! I had been dating here and there but this has had me so freaked out, I have really just kind of shut down. Haven't been out with friends, or on a date, in months. Maybe soon? Maybe. LOL.

    Hope you have a spectacular weekend! You're right, we've got this!

    {{hugs}}

    FLmama

  • GGc0ok
    GGc0ok Member Posts: 54 Member
    edited November 2020 #34
    FLmama said:

    GGX

    I don't mind you wishing celiac on me, LOL! I'll take it...

    I honestly have been feeling better emotionally. Got to have hope, right? I haven't eaten so well in the past few days and have had an accompanying upset stomach- so it really has me thinking. Don't really want to change my diet but will absolutelu do whatever I need to in order to feel better. For example, I have been anemic- and quite frankly- TIRED for most of my adult life...  so while these symptoms fit the clinical picture of L, it may make more sense that it is a chronic issue like Celiac. Trying to not think too much about it though until I get my results back. 

    Regarding your daughter-- I just know there is nothing more special than a mother-child relationship. We all have our issues and family cr*p, myself included, but I will remain hopeful that you will work it out. She sure is missing out on time with her STRONG and inspirational mama.  For that, my heart aches for you, and for her too.

    I will start Queens Gambit this weekend. Nothing better to do! I had been dating here and there but this has had me so freaked out, I have really just kind of shut down. Haven't been out with friends, or on a date, in months. Maybe soon? Maybe. LOL.

    Hope you have a spectacular weekend! You're right, we've got this!

    {{hugs}}

    FLmama

    GGX

    Hi warrior sis, 

    Im so glad your feeling emotionally better. That helps you so much. Always have to have HOPE! 
    That's OK about my daughter. I don't dwell on it anymore.  Life's too short to have drama that's petty. She knows I love her I pray she loves me.  It is what it is. 
    It's definitely hard to have any type of social life this whole year. For Bobby and myself it's been a year now. He was diagnosed with pulmonary fibrosis, plus has heart, and diabetes,and has had a colectomy. I'm his care giver. But in Oct he was mine. 
    My you get daughter is having a baby in Jan and I'm flying to Az to be with her.  She's by herself.  I had mentioned this to my Oncologist that I needed to go to Az for a month. He said he didn't see a problem with that. Also Bobbys daughter will fly out from NJ and stay with her dad for the month. It's all worked out, tickets bought. 

    Bobby and I need to find something else to binge watch.  Thank goodness for TV entertainment

    Fingers still crossed for celiac  

    You have a great weekend as well 

    Hugs

    GGX

     

  • po18guy
    po18guy Member Posts: 1,323 Member
    edited November 2020 #35
    About celiac...

    This may not help, but celiac, mostly untreted celiac, is associated with an extremely rare and highly aggressive T-Cell Lymphoma: EATL - Enteropathy Associated T-Cell Lymphoma. However, it progresses so quickly that there would be little doubt of its presence. Rather, how about one of the other 68,000+ human illnesses? Gastritis? Colitis? Anxiety? Yes, anxiety by itself can cause over 100 actual disease symptoms, with no disease being present. Far more easily and effectively treated. 64 million Americans - one in five - suffer from some form of anxiety. 

  • ShadyGuy
    ShadyGuy Member Posts: 796 Member
    edited November 2020 #36
    This may not help .....

    but dying is associated with being born. I checked and 100% of the people who died last year in the USA were at some point in their lives born! Imagine that - 100%. Birth obviously causes death. Could the trick to avoiding death and its causes be to never be born? Of course not! Anxiety, like most other human conditions, is a primal survival trait. It keeps you alert to danger. The main difference between people and animals as relates to anxiety is animals live in the moment and anxiety goes away when no longer a benefit to survival. Humans live in a weird combination of past, present, future and anxiety can hang around when not beneficial and create problems. The trick is to keep anxiety under control. Nero was probably not anxious while he fiddled as Rome burned. But maybe he should have been.

    In my non-professional lay opinion you will be fine FLmama. No need to worry about some weird form of t-cell or for that matter being struck by a meteor. You will be fine.

  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #37
    po18guy said:

    About celiac...

    This may not help, but celiac, mostly untreted celiac, is associated with an extremely rare and highly aggressive T-Cell Lymphoma: EATL - Enteropathy Associated T-Cell Lymphoma. However, it progresses so quickly that there would be little doubt of its presence. Rather, how about one of the other 68,000+ human illnesses? Gastritis? Colitis? Anxiety? Yes, anxiety by itself can cause over 100 actual disease symptoms, with no disease being present. Far more easily and effectively treated. 64 million Americans - one in five - suffer from some form of anxiety. 

    celiac

    I did actually see that somewhere... but my test came back negative. Back to the drawing board Frown

  • FLmama
    FLmama Member Posts: 20
    edited November 2020 #38
    ShadyGuy said:

    This may not help .....

    but dying is associated with being born. I checked and 100% of the people who died last year in the USA were at some point in their lives born! Imagine that - 100%. Birth obviously causes death. Could the trick to avoiding death and its causes be to never be born? Of course not! Anxiety, like most other human conditions, is a primal survival trait. It keeps you alert to danger. The main difference between people and animals as relates to anxiety is animals live in the moment and anxiety goes away when no longer a benefit to survival. Humans live in a weird combination of past, present, future and anxiety can hang around when not beneficial and create problems. The trick is to keep anxiety under control. Nero was probably not anxious while he fiddled as Rome burned. But maybe he should have been.

    In my non-professional lay opinion you will be fine FLmama. No need to worry about some weird form of t-cell or for that matter being struck by a meteor. You will be fine.

    LOL

    That made me laugh! (I needed that.)

    Got my test results back and I am negative for celiac. Beyond disappointed. 

    Still have large, firm glands in my neck but I will wait until I see my oncologist again. She assured me that even if I have lymphoma, no treatment right now. Goig to be a tough holiday season but I will appreciate every moment of it!

    Thanks again :)