MALT lymphoma

gocougs
gocougs Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am a 27 yr old woman that has survived MALT lymphoma of the salivary glands twice already. When I was first diagnosed almost 6 yrs ago, there was so little information available that it was really difficult to know how to proceed. Since then, I have seen 10 different onc's for this and have yet to find one that has actually treated another pt with it and there is still very limited information on the websites I have researched. I have been treated both times w/ localized radiation and yet b/c this type of cancer is so rare, it is still unknown whether or not that is the most effective treatment. I have been told that this cancer will recur again b/c I am "genetically susceptible" to it and something "environmentally" is triggering it. If anyone knows of any onc that has treated this or another pt that has survived this specific type of cancer (in the salivary glands), please let me know. I would love to get in touch w/ them! Right now, I am feeling all by myself in this world of the unknown! There just seem to be so many questions that I don't have any answers for. I trust God w/ everything I am in this, but the human nature side of me still wants to know what the trigger is, if there is something I can do to prevent it or to more efficiently treat it again when it comes back. Any thoughts out there?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to consider contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists can provide you with information regarding your diagnosis and also to resources in your area. They can be reached 24 hours a day at 1-800-227-2345. You can also reach them you clicking on the "Contact Us" button at the top of the page.

    Take care and be well,

    Dana
    CSN Dana
  • rola
    rola Member Posts: 3
    #3
    I was 24 years old when i was diagnosed with malt lymphoma of the orbit. I had radiation done on both eyes. 3 years after my treatment I got pregnant. Throughout the full nine months of pregnancy my right eye was looking worse & worse. Once I gave birth I had a biopsy done on the right eye. The diagnose was not cancer but granuloma inflamtion. About 2 years after that I started to experience stomach pain so I had done a body ct scan. The outcome was stomach looks good but their was a mass on my right breast. I had to biopsy the breast. The biopsy result is malt lymphoma. My oncologist doesn't want to treat me. He recommends "wait & see". It's been more than a year now that I been diagnose and had no treatment. I have been seeing so many doctors because it is so rare to have this disease at this age. These doctors all have nothing to say. I know how you feel because I fit in your shoe's. I hope to hear back from you soon.
  • justincase430
    justincase430 Member Posts: 1
    #4
    rola said:

    I was 24 years old when i was diagnosed with malt lymphoma of the orbit. I had radiation done on both eyes. 3 years after my treatment I got pregnant. Throughout the full nine months of pregnancy my right eye was looking worse & worse. Once I gave birth I had a biopsy done on the right eye. The diagnose was not cancer but granuloma inflamtion. About 2 years after that I started to experience stomach pain so I had done a body ct scan. The outcome was stomach looks good but their was a mass on my right breast. I had to biopsy the breast. The biopsy result is malt lymphoma. My oncologist doesn't want to treat me. He recommends "wait & see". It's been more than a year now that I been diagnose and had no treatment. I have been seeing so many doctors because it is so rare to have this disease at this age. These doctors all have nothing to say. I know how you feel because I fit in your shoe's. I hope to hear back from you soon.

    Hi Rola,

    I'm 24 years old. I just got back from the Dr, after a second appointment, and he believe that it have MALT lymphoma in my eyes. It hasn't changed much since the first set of photos, and he doesn't think I need a biopsy, but is willing to do it if I want it. I don't know much about malt lymphona, but the Dr. says that it's probably low risk and we can just observe it every 3 months or so. What do you think? Should I go and do the biopsy just to confirm, and what do you think of the observation approach?

    Thanks,

    Justin
  • lucy67
    lucy67 Member Posts: 1
    #5
    justincase430 said:

    Hi Rola,

    I'm 24 years old. I just got back from the Dr, after a second appointment, and he believe that it have MALT lymphoma in my eyes. It hasn't changed much since the first set of photos, and he doesn't think I need a biopsy, but is willing to do it if I want it. I don't know much about malt lymphona, but the Dr. says that it's probably low risk and we can just observe it every 3 months or so. What do you think? Should I go and do the biopsy just to confirm, and what do you think of the observation approach?

    Thanks,

    Justin

    malt lymphoma
    I also have low grade b cell malt lymphoma in my eye. It is very likely that I have had this for 20 years and was misdiagnosed back then (the red patches have been in my eye unchanged all that time). Last year, an ophthalmologist noticed it during a checkup for something unrelated and convinced me to have a biopsy which I very reluctantly did. I thought 'why now after 20 years!!!' The biopsy diagnosed this lymphoma. My haemotologist recommended watch and wait. So I have had no other treatment and hope I never do. My best source of information (aside from my very nice haemotologist who is very up to date) has been pubmed and other lymphoma websites: lymphomation.org is a good one, I used eyecancer.com. Good luck to you! I have the impression that malts are indolent (slow acting) and sometimes regress on their own. That's why doctors these days may recommend just watch and wait.
  • Lymphoma_2010
    Lymphoma_2010 Member Posts: 3
    #6
    lucy67 said:

    malt lymphoma
    I also have low grade b cell malt lymphoma in my eye. It is very likely that I have had this for 20 years and was misdiagnosed back then (the red patches have been in my eye unchanged all that time). Last year, an ophthalmologist noticed it during a checkup for something unrelated and convinced me to have a biopsy which I very reluctantly did. I thought 'why now after 20 years!!!' The biopsy diagnosed this lymphoma. My haemotologist recommended watch and wait. So I have had no other treatment and hope I never do. My best source of information (aside from my very nice haemotologist who is very up to date) has been pubmed and other lymphoma websites: lymphomation.org is a good one, I used eyecancer.com. Good luck to you! I have the impression that malts are indolent (slow acting) and sometimes regress on their own. That's why doctors these days may recommend just watch and wait.

    Parotidectomy from malt
    As i just joined this site i found you all and wanted to put my story out there in hopes that i will here from someone maybe. I was diagnosed in 2010 with syrogrens syndrome- dry mouth and dry eyes. However my checks were very big and puffie. Biopsy confirmed that it was than Malt lymphoma of the parotid gland. I tried meds and rituxamin and made it smaller on the left side but only lasted for a few months- another scan showed it grew again- next best choice that i was told from my doctors from mayo where to have the parotidectomy of my left gland. Well its been a little over than a year since that was removed and still have issues from that- mostly just so dry still doing physical therapy to get movement back. This year, my right parotid gland started being more warm to touch and been bothering me more. So in october i went back to mayo- have my ent and cancer doctor there- having this cancer is so very hard becuase no body knows anything about it seems- so frazzled and stressed. Told that i should have my other gland on other side of face removed because that is the location of it again. What to do?
  • MALTCarolina
    MALTCarolina Member Posts: 1
    #7
    Follow up

    Hi gocougs - how are you doing now, are you still going through the terapies and are you malt free now. Please share you experience, I just recently diagnozed with the similar malt/gland related lymphoma. I hope you are well.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #8
    MALTCarolina said:

    Follow up

    Hi gocougs - how are you doing now, are you still going through the terapies and are you malt free now. Please share you experience, I just recently diagnozed with the similar malt/gland related lymphoma. I hope you are well.

    Time

    MALTcarolina,

    Be aware that the post you spoke to is 12 years old (2005), and go cougs was last online in 2008 . I'd suggest you start a new thread on the subject.

    It may be a total coincidence, but I am from SC, and worked at the College of Charleston for about ten years (the team is the Cougars).  But most likely you are referring to the NC Tar Heels, who won the national championship yesterday, although the USC Gamecock's women won the women's national championship a few mights before that.

    max

     

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