Watch and wait.

givingrace
givingrace Member Posts: 161
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Well, back again.

I have been away from forum for quite sometime.

Wishing everyone blessing and well wishes

Life has had major changes & I finally have a bit of time to check in.

Unfortunatly I have needed several CT scans and a new Oncologist due to moving cross country & new developments in my original sight of diagnosis in 2010.

I have several 1mm-2mm "masses" in the submandable area in jaw (left side).

The right side has 3 - 4mm "masses". I can feel them when I turn my head in any direction. A few weeks ago I had an occipital lymphnode swell up the size of a golfball. That was very bothersome. After getting sent to ER they d/c me with antibiotics and followup with primary that did nothing it eventually went down. Oncology didn't seem alarmed . 

At the same time I was sent to a ENT because of trouble swollowing,breathing and  sore throat all the time. Yes, I also started a C-pap machine. ENT is recomending adnoid and tonsil removal because they are swollen. I'm kinda freaked out .

All that being said. I don't see oncology until the end of the month but my goodness the frustration.

I know this journey is not only about medical. The spiritual & emotional side of dealing with this is a rollercoaster. One day we are so strong and the next we fall to apart.

The support and information on this sight is amazing . 

I don't know where my journey of having non-hogkins follicular lymphoma will go. I do know I have fallen back on this discussion board sence 2010. It's encouraging and full of information. I appreciate it and anyone who has particapated in this discussion board.

I am rambling.

Just wish and pray the best for all of you.

I will be around more ... 

 

 

 

 

 

 

 

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    #2
    Honestly...

    I can't see lymphoma in there. It does not generalaly occur bi-laterally until late stage. And maybe not even then. This has been one heck of a cold/flu/virus season. I was hospitalized in Febrauary with 2-3 different viruses. Every blood panel known to medical science was run. Notihng. Unknown, unidentified viruses. I was sick the entire month of June and into July with Human ParaInfluenza Virus type 3, which also leads to pneumonia.

    That was the only virus actually identified. Antibiotics? Worthless! Unless you are running a fever and there is obvious sign of bacterial activity, they do nothing except raise anxiety levels. Viruses do not respond to antobiotics or anti-fungals. What they do, is cause your lymph nodes to grow like crazy. I have several along my jawline right now, according to my hematologist.

    Neither of us is the least bit worried as viruses act like that. I am über sensitive to coughs and sneezing, as my immune system is suppressed. Take a listen when you are in public: there is still coughing and sneezing all over the place. Why? Because this is a very bad cold and flu year.

    If doctor is not worried, then neither should you be. If symptoms worsen or additonal symptoms apprear, simply make another appointment. Bottom line: This is a weird year.  

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #3
    Stay alert - trust but verify

    IMHO you should always question your doctor. I had one hell of a time getting my original diagnosis. Myriad tests were run over many months. The highly rated GP and specialists he sent me to told me in my final appointment that I needed to “learn to relax” and “live my life”. He said (sic) “I have ruled out everything but lymphoma and I am sure you don’t have that”. “Go home and get a hobby”. They never suggested I see an oncologist. Never. None of them. Two months later a PA in the office of one of the rheumatology specialists my GP had sent me to strongly suggested I see an oncologist. This came minutes after her boss, the MD, told me my MRI looked great. I had stage IV lymphoma Including bone marrow. Bottom line is anyone can make a mistake.

    We have to trust our MDs. But “if the doctor is not worried then neither should you be” is not a position I recommend. Just my non-professional opinion. Always be skeptical. That’s different than always worrying. Its like counting your change after a transaction. Did the clerk make an honest mistake and short you $20.? Or like a teenage son. You want to believe their story of where he has been and what he has been doing but you still check out his story.

  • givingrace
    givingrace Member Posts: 161
    #4
    po18guy said:

    Honestly...

    I can't see lymphoma in there. It does not generalaly occur bi-laterally until late stage. And maybe not even then. This has been one heck of a cold/flu/virus season. I was hospitalized in Febrauary with 2-3 different viruses. Every blood panel known to medical science was run. Notihng. Unknown, unidentified viruses. I was sick the entire month of June and into July with Human ParaInfluenza Virus type 3, which also leads to pneumonia.

    That was the only virus actually identified. Antibiotics? Worthless! Unless you are running a fever and there is obvious sign of bacterial activity, they do nothing except raise anxiety levels. Viruses do not respond to antobiotics or anti-fungals. What they do, is cause your lymph nodes to grow like crazy. I have several along my jawline right now, according to my hematologist.

    Neither of us is the least bit worried as viruses act like that. I am über sensitive to coughs and sneezing, as my immune system is suppressed. Take a listen when you are in public: there is still coughing and sneezing all over the place. Why? Because this is a very bad cold and flu year.

    If doctor is not worried, then neither should you be. If symptoms worsen or additonal symptoms apprear, simply make another appointment. Bottom line: This is a weird year.  

    I understand what you mean by

    I understand what you mean by not seeing lymphoma in there and the whole bi-laterally thing.

    When I was first diagnosed in 2010 I was 3erd stage and the lymphnode they biopsied and removed was in the very same general area as the two sides with 1-4mm  " nodual" looking masses are now. So trying to keep that in mind is good. Thank you for the insight.

    My  anxiaty with all this has continualy been high especially after the second diagnosis came from an MRI after a car accident that landed me in a level one trauma center with a head injury. Fast forward to a biopsy in my nasopharyngeal area it was confirmed to be cancer again. So all that being said I know all I really have is today. tomarrow is never promised but I will be some what calm and anxiaty rittled in one. Yes all these viruses and colds with our compromised immune systems can be the culprit.  I just pray and hope so. If not I will comtinue to fight through. After all, thats what we do ,right?

    Best wishes to you

  • givingrace
    givingrace Member Posts: 161
    #5
    ShadyGuy said:

    Stay alert - trust but verify

    IMHO you should always question your doctor. I had one hell of a time getting my original diagnosis. Myriad tests were run over many months. The highly rated GP and specialists he sent me to told me in my final appointment that I needed to “learn to relax” and “live my life”. He said (sic) “I have ruled out everything but lymphoma and I am sure you don’t have that”. “Go home and get a hobby”. They never suggested I see an oncologist. Never. None of them. Two months later a PA in the office of one of the rheumatology specialists my GP had sent me to strongly suggested I see an oncologist. This came minutes after her boss, the MD, told me my MRI looked great. I had stage IV lymphoma Including bone marrow. Bottom line is anyone can make a mistake.

    We have to trust our MDs. But “if the doctor is not worried then neither should you be” is not a position I recommend. Just my non-professional opinion. Always be skeptical. That’s different than always worrying. Its like counting your change after a transaction. Did the clerk make an honest mistake and short you $20.? Or like a teenage son. You want to believe their story of where he has been and what he has been doing but you still check out his story.

    Well thanks for your input.

    Well thanks for your input. What a crazy rollorcoaster that must have been.

    I ended upwith two dr's that were brothers(I refer to as tweedle dee and tweedle dumb) and they seemed to go in circles for about three months until I contacted my 18 year primary care Doc and he sent me to a ENT specialist just three doors down. He had it diagnosed confirmed and set me up with a top 10 oncology Doc in a flash. 

    I will remember asking a few extra questions is perfectly ok.

    I am already feeling a bit calmer just chatting about this to those who have been in these situations.

    It's also like when you can't find something and you just need a "second" pair of eyes.

    Well wishes to you.

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