Conjunctiva MALT Lymphoma

Sadie Teacher
Sadie Teacher Member Posts: 5
edited September 2016 in Lymphoma (Hodgkin and Non-Hodgkin) #1

I hope this is okay.  I thought since I've had trouble finding others with ocular cancer I'd post my story to-date for future readers. 

At a regular  optometrist check up in May I was told I had bad inflammation in my eyes due to allergies.  I used steroid drops for three weeks for inflammation.  At a follow up visit my left eye had much improved, but my right eye had not.  During this time I had NO symptoms, nothing.  I was referred to an  ophthalmologist for further follow-up .

The ophthalmologist examined my eyes and told me I had a growth in the conjunctiva of my right eye requiring a biopsy  and I was referred to a second ophthalmologist. I saw the second ophthalmologist in July and the next day a biopsy was done. Three weeks later we were told the growth was lymphoma.

 At the end of August I saw an oncologist at Princess Margaret Hospital in Toronto. He explained that I have MALT lymphoma in both my right and left eye.   That day I had blood work done and my mask was made for radiation therapy. The next day I had a bone marrow biopsy done to check for lymphoma in my marrow and a CT scan is scheduled for the end of September to determine if there's cancer elsewhere.   In the meantime I will have 10 radiation treatments over the next two weeks on both eyes at the same time. We have been told this will be low-dose radiation and has a very high success rate. 

 Although I have been able to find information on ocular MALT lymphoma, due to the rarity of this cancer, I have found no one to talk to with a similar experience.  Hopefully, if anyone in the near future comes here looking for support they will reach out.

Thanks,

Sadie

Comments

  • Unknown
    Unknown
    #2
    I know a person

    with this condition but in one eye. He had standard radiation then they planted a small kernal of radioactive material in his eye which will be removed after 6 mos. He is fully active living a normal life. Only sign is redness in the affected eye. That may be something you could ask about. He says it is painless except for some occasional itchiness. Hope this helps in some small way. All my best wishes.

  • IN_Denial
    IN_Denial Member Posts: 2
    edited December 2019 #3
    Conjunctiva MALT Lymphoma

    Sadie,

    Your story is identical to mine, except the MALT lymphoma so far has only been in one eye. I had the radiation treatment and I have the lab tests each year to make sure the lymhoma is in remission.  I had a bone marrow biopsy in 2013 when the MALT was diagnosed and showed positive for lymphoma in my bone marrow, however, my Radiologist said even though this indicates Stage 4, for me not to worry. Other than my eyes being extremely dry due to the radiation, I guess everything is fine and I'm not supposed to worry about what the bone marrow biopsy indicated over 6 years ago!  Undecided

  • lindary
    lindary Member Posts: 711 Member
    #4
    in_denial

    You added to an old thread. You may want to create your own topic so that more in the group will see what your condition is.

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