Diagnosed with Marginal zone lymphoma

patcard
patcard Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
just been diagnosed, after my regular physical, dr sent me for chest x-ray,found a "spot" on my air passage, after pet scan, found growths in my groin area, under left arm pit, never had any symptoms. im currently on wait and watch, anyone have any idea what i'll should be expecting down the line. i know it is a very rare and very slow growing nhl

Comments

  • Hestia
    Hestia Member Posts: 26
    #2
    Is the doctor your referred
    Is the doctor you referred to your primary care doctor or your oncologist? If not oncologist, would suggest you get one. I have (am currently in remission)NHL, but not marginal zone lymphoma. I did google MZL and found that there are four types MALT, Nodal and Splenic (if I spelled them all correctly). Do you know which one you have, how long does the doctor suggest you wait and watch? Site I was on did say very rare (2 to 4% of lymphomas diagnosed).
    Wait and watch would drive me nuts, but I do know that is the suggested course in many cases. I am urging that you do some research of your own (leukemia-lymphoma.org has a great site. I printed out some of their stuff and made myself a notebook (at least it gave me the feeling I was being pro-actice). I read thru articles, did more google searching and generally familiarized myself with my type of cancer.
    If you don't have an oncologist, please consider searching one out via suggestions from primary care doctor, recommendations from friends, google search. Are you near a teaching hospital that has a cancer division?
    Hope above suggestions help and that someone that is actually dealing with Marginal zone lymphoma will respond to your post.
    Take care of yourself,
    jacky
  • patcard
    patcard Member Posts: 6
    #3
    Hestia said:

    Is the doctor your referred
    Is the doctor you referred to your primary care doctor or your oncologist? If not oncologist, would suggest you get one. I have (am currently in remission)NHL, but not marginal zone lymphoma. I did google MZL and found that there are four types MALT, Nodal and Splenic (if I spelled them all correctly). Do you know which one you have, how long does the doctor suggest you wait and watch? Site I was on did say very rare (2 to 4% of lymphomas diagnosed).
    Wait and watch would drive me nuts, but I do know that is the suggested course in many cases. I am urging that you do some research of your own (leukemia-lymphoma.org has a great site. I printed out some of their stuff and made myself a notebook (at least it gave me the feeling I was being pro-actice). I read thru articles, did more google searching and generally familiarized myself with my type of cancer.
    If you don't have an oncologist, please consider searching one out via suggestions from primary care doctor, recommendations from friends, google search. Are you near a teaching hospital that has a cancer division?
    Hope above suggestions help and that someone that is actually dealing with Marginal zone lymphoma will respond to your post.
    Take care of yourself,
    jacky

    Thanks jacky
    yes i do have an oncologist, i been going to mass general hospital here in boston, i believe i have malt, i will be having a pet scan in oct. my blood work from last week exam was great, thanks for all the advice. as for wait and watch hopefully ill be doing that for a while, the doc said he doesnt want to start any treatment unti he really has. i never had any symptoms and still dont, have a lump in my groin area and under arm pit and on my air passage going into my lungs. dr said it is a very very slow growing cancer and 10% of all cases dont grow at all, hopefully im in there..
  • suekdc
    suekdc Member Posts: 2
    #4
    patcard said:

    Thanks jacky
    yes i do have an oncologist, i been going to mass general hospital here in boston, i believe i have malt, i will be having a pet scan in oct. my blood work from last week exam was great, thanks for all the advice. as for wait and watch hopefully ill be doing that for a while, the doc said he doesnt want to start any treatment unti he really has. i never had any symptoms and still dont, have a lump in my groin area and under arm pit and on my air passage going into my lungs. dr said it is a very very slow growing cancer and 10% of all cases dont grow at all, hopefully im in there..

    Also going to MGH...
    Hi,

    I was just diagnosed with ocular malt lymphoma, and will be going to an oncologist at MGH next week. Do you like it at MGH? I can't imagine being told to just watch and wait - must be excruciating! It's pretty scary being told you have cancer, huh? : (

    Sue
  • patcard
    patcard Member Posts: 6
    #5
    suekdc said:

    Also going to MGH...
    Hi,

    I was just diagnosed with ocular malt lymphoma, and will be going to an oncologist at MGH next week. Do you like it at MGH? I can't imagine being told to just watch and wait - must be excruciating! It's pretty scary being told you have cancer, huh? : (

    Sue

    Yes i do like the MGH
    hello, since my original post i have started rituxan drug study, i just completed a 4 week drug infusion, im so glad im proactive better than watch and wait. im very happy with the dr's and nurses and staff, they have been great, i go to yawkey 8, for my treatment and yawkey 7 for my doctors, and yes it is very scary just to hear the words cancer, but ,i also have learned you must have a very positive attitude, and i do try and keep that, nice talking to u sue and if u like please feel free to comment and id be glad to reply and good luck to you. pat

Discussion Boards