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What tests?

Sadie Teacher
Posts: 5
Joined: Aug 2016

A growth was found in the conjunctiva of my right eye and after a biopsy by the ophthalmologist I'be been told it is lymphoma.  I've been referred to Princess Margaret Hospital (Toronto, Ontario) and my first appointment is in two weeks.  I'm wondering what to expect in terms of tests at my first appointment.  I realize this might be slightly different, but in general what might I expect.

Thanks in advance,

Sadie Teacher

po18guy
Posts: 1009
Joined: Nov 2011

I don't know what HC authorizes, but 'maybe' blood work? Afterall, this is an initial hematology consultation, correct? More than likely, Dr. will discuss the type of lymphoma it is and treatment options with you. Thinking about it, maybe not even blood work, as it is a relatively small amount of tumor cells, as compared with disease in the torso. No, probably treatment options.

Sadie Teacher
Posts: 5
Joined: Aug 2016

We were told that it would need to be determined if there is lymphoma elsewhere in my body.  That would just be bloodwork???  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Sadie,

Looking for lymphoma elsewhere would involve a CT scan.  These are painless, and once you are checked in, if no contrasting agent is used, take about five minutes on the machine. If a contrasting agent is used, it takes about an hour or so, total time.

Although CTs use radiation, the dosage in getting a few annually is regarded throughout the Radiology and oncology communities as safe.  Of course, there are some people who believe their cell phone is giving them cancer, but fortunately, it isn't.  Blood labs have some value and usefulness in diagnosing and tracking lymphoma, but it is usually limited. And blood work absolutley will not tell a doctor where lymphoma is located, if it tells him anything at all.  I was diagnosed in 2009 with advanced Stage III HL (nodes from my lower neck to pelvic area, and from one armpit to the other), but my blood labs even at that time were nearly NORMAL.

max

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Sadie,

When I went for my first appointment with my Hematologist/Oncologist, I had already had a CT scan and a biopsy.

During my first appointment, I had a physical examination, 11 vials of blood drawn, a bone marrow biopsy, and an ultrasound. I left with appointments for a PET scan, an Echocardiogram, and scheduled for surgery for excision of an axillary lymph node and placement of a port-a-cath. Whew! What a day.

I hope your appointment isn't nearly involved, but since you asked, I thought I would share what could happen. 

That was four years ago and I'm still here. Smile

Hugs, Rocquie

 

po18guy
Posts: 1009
Joined: Nov 2011

I rather doubt that scanning would take place at first consult, as those are normally scheduled well in advance. Having said that, they may want to follow up with a scan. As to the CT, that type of scan looks for masses, primarily enlarged lymph nodes. A CT is not diagnostic of lymphoma, but helps in the diagnostic process. If enlarged nodes or other masses were found, they will probably then want to perform a PET scan. The PET looks for hypermetabolic activity, which is much more associated with a malignancy, such as lymphoma. Still, lymphoma can be primary in your eye, as it is an immune system cancer that flows in the blood and lymph. And, there is no current evidence to suggest that it exists elsewhere - they are simply being diligent.

Sadie Teacher
Posts: 5
Joined: Aug 2016

Thank you everyone.  We are taking the approach of plan for the worst, hope for the best.  i feel like I'm going into this first appointment blind and having no idea what to expect.  At least now I feel like it could anything from at CT to a full array of tests.  I didn't even know how they go about looking for lymphoma elsewhere do your response are helpful. 

Sadie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Sadie,

We have a member here named Sue, whose screen name is allmost60.  Her lymphoma began as Follicular and a few years later re-occured in her eye socket. She was doing ok last I heard, but she has not logged in in about five months now.  She may have insights she could share with you. I don't know if she monitors her CNS e-mail any longer.

Lymphoma can show up almost anywhere, but the eye, brain, and central nervous system are extremely rare places for it to go.  But a few members here have experienced lymphpma in those areas.  I hope your further testing reveals that you have very little cancer involvement and are treatable with as few drugs or radiation as possible,

max

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