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Anyone else had lymphoma in the eye area?

Posts: 10
Joined: Jan 2003

I'm newly diagnosed with extranodal non-Hodgkins lymphoma. Mine is on the conjunctiva of my right eye. My doctor doesn't plan to do any more surgery than he already has - a biopsy - and I will have radiation treatments to zap the cancer.

I've had a CT-scan, which showed no other signs of lymphoma anywhere else, and a bone marrow biopsy, which showed no lymphoma in the marrow. My next step is to meet with a radiation oncologist this Wednesday to discuss treatment. I'm hoping the doctor will also get my treatment scheduled at that time. I'm ready to have this "freeloader" zapped out of me!

I'd like to hear from anyone who has been treated for this type of lymphoma - particularly someone who's had it in the eye area.


jimwins's picture
Posts: 2111
Joined: Aug 2011

Welcome chuanlw,

I'm sorry you have to be here but you
have found a good place - you'll find many wonderful and supportive people here.

The thought of chemo is very scary but most of us here have
gone through it successfully. It does breakdown your immune system and there are side
effects. The side effects are very individual - some people have many
whereas others have almost none from the chemo. I was fortunate that
I had very few side effects and the ones I experienced were tolerable.

Today, they have so many options to control and prevent side effects so it's
not like it was several years ago. Regarding the immune system, the
weakened immune system is temporary after treatment. Shortly after a cycle
is complete, they give you a medication to build back your immune blood counts
(bone marrow). There is usually a period of time (a few days in my case) where
you are very vulnerable because your blood counts are low. During this time
you have to avoid crowds, sick people and basically raw/uncooked foods.

The first couple of cycles of chemo are difficult as you don't know what to expect
and how your body is going to react. By cycle 3 or 4, it's more routine and less
frightening. I won't lie - it's no fun - but the results are worth it for most

Unfortunately, I don't have experience with radiation therapy so I am not
speaking on that. Hopefully others will respond on that topic.

There are many success stories here on this site where people have been cured
and/or have been in remission for years. There is hope!

You are not alone in your fear and you are very welcome here at this site.

Hugs and warm and positive thoughts,


Posts: 4
Joined: Nov 2011

Thanks Jim,

I feel a little bit comfortable after seeing your reply.
But I told myself I want to be getting better. So, if the treatment is needed, I definitely will go for it.
I will keep posted and update you all my status. Hope everything get well ...


Posts: 5
Joined: Mar 2010

For what's it worth:


"Chlamydophila Psittaci Eradication With Doxycycline As First-Line Targeted Therapy for Ocular Adnexae Lymphoma: Final Results of an International Phase II Trial"

Best regards,


Posts: 2
Joined: Jun 2013

I have been following the discussion you generated 10 years ago about your lymphoma.  I hope you are doing well.

It has been helpful reading these posts as I have been struggling with my recent diagnosis. I hope to hear from others and get some words of encouragement.

I plan on having radiation and then chemo within the next few weeks and pray that the side effects of the treatments are not worse than my symptoms.

Posts: 2
Joined: Jun 2017

Hello everyone,

Friday June 2nd, I was told that I have possibly MALT lymphoma on lacrimal gland, right eye. Next week, I will find more about staging and localisation. It is very scary and cannot find rest. I heard about radiotion therapy if the tumor is localised, or chemo if it is spread. Right now I am so scared that I will not manage to see growing my 2.5 years old son, that I will not manage to have a normal relationship with my husband. Waiting period over the past weeks has been very hard, and still. I cannot make any sense of what is going on, how I can rebalance my life, to have a new normal. I do not know what normality is. Not anymore. This is also after having other problems over the past year (loss of advanced pregnancies).

I am a beliver in God, trying to understand what is happening, what is the purpose of going through this. i cannot stop anking 'Why?'. I cannot accept yet.  I pray that I will reach to have peace over the situation, and preserve my energy for the treatment.

Do you have any tips on how to best deal with the waiting period (until clarity), but also during the treatment?

Thank you,



po18guy's picture
Posts: 1156
Joined: Nov 2011

Even if you do have it, MALT is a slow-growing, chronic disease. It is considered to be a manageable illness, similar to autoimmune conditions or various degenerative diseases. It is not in any way an immediate threat to your life. Treatment is well established, is constantly improving and outcomes are better than ever. Here is a link to an information page regarding MALT

As to making sense of it: Do any of the recent headlines make sense? Tragedy and suffering are universal human experiences. They cannot be avoided. How we respond to such is within our control. Many who are younger and healthier than us have had their lives interrupted or cut short by tragedy and suffering. In comparison to them, we have nothing to complain about, even though we remain shocked by this sudden change in our lives. 

Was it our expectations of life which were unresonable? Are we little more than a table tennis ball that is tossed about by external forces? Not at all. In my case, I was prepared for and have been well equiped to deal with cancer. I have not once asked the normal "why me?" that is almmost expected. I have not once wondered if all of this was "fair."

Truly, if life was fair, every living human would have cancer - thus, I do not want life to be fair. This journey has been chosen for me and I, in return, choose to embrace it. I live, not for this life, but for the next, which I believe never ends. This life is transient, and I consider myself to be a pilgrim, an exile if you will, on this earth. Knowing that, the end of all of this misery is perceivable, if not yet in clear view. I find comfort in that.

My struggle has helped others and that, if pondered, can be reward enough.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3609
Joined: May 2012


MALT/Eye lymphoma involvement is rare, but there have been a few here with it over the last several years. One was the avitar "almost60," but she quit writing about 2 years ago. Many of her friends still here wish she would check in on occasion.

As to "why me" ?  The answers fall mostly into 2 general ranges.   1. For religious believers, it is usually addressed as a mystery or unknown.  2. For persons who deny any view of the supernatural, the answer (logically) must be that the occurence is essentially random, whether genetic or physiology, or whatever.  It has then no "purpose," unless it be some purpose the patient themselves confers to it.

My thought on the "why me?" question has always been, "Why would it not be me ?"   And: Would it be better for it to be the guy next door? The guy at work ?  How "religious" are those views ?

Whether religious or non-religious, all people are born some day to endure disease, decline, sadnesses, tragedy, and some day, the end.  The poor souls murdered on London Bridge yesterday: probably all were affluent, world-travellers.  The thousands in the World Trade Towers when they went down: Mostly the rich, the movers and shakers, people who ruled the financial world (not all, but most). Wealth, fame, protect no person at all.   Tragedy at some point arrives for all.  But life can still be joyous and full of purpose for most individuals.

The rest is all timing, which we do have difficulty understanding.  Comedians say their art is "all timing in delivery." So too in tragedy. I hope you discover some form of peace, and move forward from this trial,


Posts: 2
Joined: Aug 2017

Hello everyone, 

I want to first say that I have not been diagnosed but have all sorts of eye symptoms and am wondering if anyone could give me some input.  It all started nine months ago when my eyelid swelled up.  I didn't think anything of it and took a Benadryl.  Then I noticed it would swell up monthly.  Now it swells up biweekly, both eyes now, and I have swelling all around both eyes.  In the past month, I have noticed significant floaters.  I have been to my general practitioner probably 10 times, an allergist, an ENT and had a sinus CT, an opthalmologist who dilated my eyes and says he sees nothing.  My diagnosis is idiopathic angioedema, which is basically swelling with unknown cause.  I'm not comfortable with that and was wondering what your experiences have been.  I hope I'm not offending anyone as I have not been diagnosed and pray for all of you.  I guess I have concerns and was looking for some input.  I don't know where to turn.  Not to mention I have neck pain.

 Thank you from the bottom of my heart for reading this And God bless you all!



po18guy's picture
Posts: 1156
Joined: Nov 2011

Have you had the autoimmune panel run? All inflammation is controlled by your immune system. Do you have psoriasis, eczema, arthritis, lupus, Crohn's or any other autoimmune condition?

Posts: 2
Joined: Aug 2017

I do have excema.  Thank you.  Maybe I will go back to the doctor and have them run that.  I did have a CBC which was normal.  


Posts: 2
Joined: Sep 2018

I went to Eye Institute this week and the doctor is pretty certain that I have Malt Lymphoma of the eye.  Did anyone else here have any problems getting diagnosed?  Just how rare is this condition?  I am upset that my ophthalmologist of 6 years did not notice the lesions in my eye although I have seen her 4 times this year! My dry eye condition and ocular rosacea were increasingly bad this year.  In mid March I had a large floater and flashes of light.  She dilated my eyes twice- in March and in May- I had meant to ask her about the tissue growth at the base of my right eyeball, but forgot.  I assumed that if it was something abnormal that she would say something.  Then in June, AFTER my exam was over, I asked her to take a look at it.  She became very concerned and flustered.  I asked her if it was normal and she said "no".  I asked her if she had ever seen this before - she is in her 60's and she said that she hadn't & that I would probably need a biopsy.  She gave me Lotemax and said that when she came back from a trip in 3 weeks she would send me to someone else for a biopsy.  I decided to seek a 2nd opinion and scheduled an appt. in the Eye Institute at our local teaching hospital--but I had to wait until Sept. 26---so I saw a friend's ophthalmologist who said she didn't think it was lymphoma.  I had also noticed a pink spot under my upper eyelid- in the fornix that looked like pictures I saw on the internet so I asked her to check it out.  She said she didn't see anything but lots of ocular rosacea inflammation.  I had my visit at the Eye Institute this week and the doctor immediately said that I needed a biopsy.  He DID SEE the pink spot under my upper eyelid and said it was working itself around my eye.  I have had lots of discomfort in both eyes this summer and lots of anxiety.  My blood pressure was sky high and my primary doc doubled my medication and added a beta blocker.  I will have a biopsy sometime in Oct.--so much WAITING, but the new doctor is pretty certain it is Malt.  He said that it is exquisitely sensitive to radiotherapy and an injectible chemotherapy and he felt confident that it could be zapped away.  He did not see it in my left eye, but it will be biopsied also.  Just wondering if others here had problems getting a correct diagnosis.

Posts: 633
Joined: Jan 2017

They have seen it all. They did wonders for my son for a different issue when he was just an infant. It would be a good place to start for all things relating to the eye. They are not a cancer hospital but could help you get appropriate care - in a hurry. https://www.willseye.org/

Posts: 2
Joined: Sep 2018

Hello, I would love to message with you regarding this diagnosis.  I will be having a biopsy this month and have questions and concerns.


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