tonsil lymphoma

secretsquirrel_215
secretsquirrel_215 Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello. This is my first time doing this so please bear with me as I am computer illiterate. I had a swollen left tonsil. After 3 rounds of antibiotics, no help. An ent did a biopsy which came back as lymphoma. The cancer center ordered a PET scan from a local hospital which showed the cancer confined to the left tonsil. Nothing showed up in the surrounding tissues or other lymph nodes. A bone marrow biopsy came back completely normal. No cancer has ever shown up in any other blood tests they've done. I am going for a second opinion soon but I have some questions and am looking for input. When the ent did the biopsy, his nurse/assistant packaged the three samples in the same package. I heard him tell her that she should have packaged them separately. Question; could this have caused a false positive? I have none of the other usual symptoms, i.e. weight loss, fatigue, etc. I'm trying to get my mind right for te chemo and radiation but these things raise doubt in my mind. Any ideas or comments? thinks folks. My name is Dave.

Comments

  • pinsandneedles
    pinsandneedles Member Posts: 8
    #2
    I hope you've gotten some
    I hope you've gotten some answers. My husband had hodgkins 10 years ago and has a tonsil mass right now. he is having it removed in 5 days. We'll find out then if it's back. I hope you're doing OK. If you'd like, I will let you know how it goes.
  • secretsquirrel_215
    secretsquirrel_215 Member Posts: 6
    #3
    pinsandneedles said:

    I hope you've gotten some
    I hope you've gotten some answers. My husband had hodgkins 10 years ago and has a tonsil mass right now. he is having it removed in 5 days. We'll find out then if it's back. I hope you're doing OK. If you'd like, I will let you know how it goes.

    tonsil lymphoma
    It's so good to finally hear from someone. Anyway, I could never get them to remove the tonsil. I got the "playbook" answer that "surgery is not a treatment for lymphoma." Right now I am undergoing chemo. I'm not feeling nauseated, but the shots are killing me! They are giving me the "r-chop". The rituxan causes me some heart problems for a day or two but then subsides. However, a week out from the treatment I have started having heart and chest pains again. My cancr doctor today said it was because of the shots. The thing is, HE NEVER EVEN LISTENED TO MY HEART!!!!! I just cannot get doctors to listen to me!
    I hope all turns out good for your husband. I never knew how tormenting this could be. I'll keep your husband in my prayers.
  • pinsandneedles
    pinsandneedles Member Posts: 8
    #4
    secretsquirrel_215 said:

    tonsil lymphoma
    It's so good to finally hear from someone. Anyway, I could never get them to remove the tonsil. I got the "playbook" answer that "surgery is not a treatment for lymphoma." Right now I am undergoing chemo. I'm not feeling nauseated, but the shots are killing me! They are giving me the "r-chop". The rituxan causes me some heart problems for a day or two but then subsides. However, a week out from the treatment I have started having heart and chest pains again. My cancr doctor today said it was because of the shots. The thing is, HE NEVER EVEN LISTENED TO MY HEART!!!!! I just cannot get doctors to listen to me!
    I hope all turns out good for your husband. I never knew how tormenting this could be. I'll keep your husband in my prayers.

    Hi and I hope you are feeling ok today! Well, we finally got the results of his biopsies. He is positive for Hodgkins in his adenoids and left tonsil. We went to the oncologist last week and they told us it's likely in his lymphnodes as well. I feel your frustration. When I read posts, it seems like some doctors are totally on it and doing whatever they can for their patients, but ours are dragging their feet and not getting things done like they need to be! I feel like no one is taking this serious. You are right... they need to listen! I'm really bent about the time that has gone by. I know it's going to be a rough road. It has been already and we haven't even started treatments. He went for the bone marrow biopsy on Friday and they had to do it three times! We won't find out staging until the 29th. Did they stage you?
    Praying this ordeal ends soon for you so you can feel good again!! pins
  • secretsquirrel_215
    secretsquirrel_215 Member Posts: 6
    #5
    pinsandneedles said:

    Hi and I hope you are feeling ok today! Well, we finally got the results of his biopsies. He is positive for Hodgkins in his adenoids and left tonsil. We went to the oncologist last week and they told us it's likely in his lymphnodes as well. I feel your frustration. When I read posts, it seems like some doctors are totally on it and doing whatever they can for their patients, but ours are dragging their feet and not getting things done like they need to be! I feel like no one is taking this serious. You are right... they need to listen! I'm really bent about the time that has gone by. I know it's going to be a rough road. It has been already and we haven't even started treatments. He went for the bone marrow biopsy on Friday and they had to do it three times! We won't find out staging until the 29th. Did they stage you?
    Praying this ordeal ends soon for you so you can feel good again!! pins

    tonsil lymphoma
    Hello again, I will be praying for you. Yes they staged me as stage one. There are several funny things about my ordeal. First, they didn't handle the biopsy sample right which could have given false results, but no one seems to care. My cancer doctor sent me to a hospital to have my tonsils removed and that doctor threw a fit!!!! He said he was insulted that I was there because as he said, "you don't treat lympohoma with surgery." So he flat refused to remove them. I even went out of state to a reputable hospital to have a second biopsy done and they refused!!!!! No blood test has ever said the lymphoma was there, there has never been a test that clearly showed any type of tumor, I've just had a battle! I too had the bone marrow biopsy. It sure wasn't fun! I've had 5 r-chop treatments. I have refused radiation because they would more than likely burn out my vocal chords. I am a pastor and a singer and that just wouldn't work. I have one more treatment to go and it's next Tuesday March 9th. When you read this, if there's any way I can help you or offer any advice, I've done a lot of research and I'll help in anyway I can. You can email me at secretsquirrel_215@yahoo.com. I am in WV and available if I can help. I can tell you alot about what to expect in the chemo treatments and the neupogen shots that he'll probabaly have to take. Get in touch in you need to! God Bless and you'll be in my prayers. David
  • ricky_b
    ricky_b Member Posts: 10
    #6
    My fairly long story.. Still no convincing diagnosis
    http://csn.cancer.org/node/245767

    Please suggest what should I do.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #7
    secretsquirrel_215 said:

    tonsil lymphoma
    Hello again, I will be praying for you. Yes they staged me as stage one. There are several funny things about my ordeal. First, they didn't handle the biopsy sample right which could have given false results, but no one seems to care. My cancer doctor sent me to a hospital to have my tonsils removed and that doctor threw a fit!!!! He said he was insulted that I was there because as he said, "you don't treat lympohoma with surgery." So he flat refused to remove them. I even went out of state to a reputable hospital to have a second biopsy done and they refused!!!!! No blood test has ever said the lymphoma was there, there has never been a test that clearly showed any type of tumor, I've just had a battle! I too had the bone marrow biopsy. It sure wasn't fun! I've had 5 r-chop treatments. I have refused radiation because they would more than likely burn out my vocal chords. I am a pastor and a singer and that just wouldn't work. I have one more treatment to go and it's next Tuesday March 9th. When you read this, if there's any way I can help you or offer any advice, I've done a lot of research and I'll help in anyway I can. You can email me at secretsquirrel_215@yahoo.com. I am in WV and available if I can help. I can tell you alot about what to expect in the chemo treatments and the neupogen shots that he'll probabaly have to take. Get in touch in you need to! God Bless and you'll be in my prayers. David

    Biopsy
    S-Squirrel,

    If all three samples were from YOU (I am assuming they were), then no, it cannot be a false positive, which is extremely rare anyway. Worse-case, the exact SITE might be off, but I doubt that as well.

    Lymphoma and leukemia are different from organ cancer, in that the nodes are not usually cut out the way parts of organs are, since the lymphatic system is "systemic," or flows all ove the body, all the time. An early stage one case might very well not trigger the usual markers for cancer in blood tests, so that is probably reasonable also.

    Update us, if you wish. Everyone prays for everyone around here, at least in their own way.

    PS: The squirrels are feasting on my pecan trees !

    max
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #8
    ricky_b said:

    My fairly long story.. Still no convincing diagnosis
    http://csn.cancer.org/node/245767

    Please suggest what should I do.

    Link

    Ricky,

    I could not open your link. It might just be me, or my firewall.

    max
  • Angiec
    Angiec Member Posts: 1
    #9
    So sorry

    Hello. I'm so sorry about your situation And pray you get the answers you deserve.

     

    Please ask questions and be informed because it's your right!!!  Who cares if they get mad because you ask too many questions!! It's your life not theirs  

    My dad was diagnosed with non Hodgkin's lymphoma one year ago. 

    We went to several different Doctors for biopsies and they could not determine if it was or was not cancer to start with so they had to do a surgical biopsy. When this was done the Doctor came out and said he did get the biopsy but also removed his tonsil because it was huge. Well, my mom was like "you did what" he had them removed when he was young!!!  I am aware they can grow back but should they have been removed at this point??

    So, reading your statement about them not wanting to do surgery on you tells me this should have never been done and could have caused this to spread. 

    We think from that point on, my dad didn't have a chance and only lived one year after being diagnosed with supposedly "the curable cancer" And it makes me sick to think we could still have him here with us today if it wasnt for that Dr. which was an ENT Doctor. 

    #stillbroken

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    #10
    7.5 year old thread

    All of this occurred 7 1/2 years ago, and the poster was last online 6 1/2 years ago. Surgery is very unlikely to cause a cancer to spread - leaving a known cancer in-place seems more dangerous. There is rarely sufficient information presented here to make an informed decision regarding the appropriateness ofdoctor's decisions, and muc will always remain unknown as far as cancer goes. All of this points to the necessity of seeking out a designated cancer treatment center, one that is recognized by the National Cancer Institute as a comprehensive center.

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