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Christine

After treatment for follicular lymphoma, Christine did not suspect problems with her eye could be the lymphoma reappearing

Christine in her garden

‘For several months during 2000 I had been feeling more tired than usual, but put it down to quite a heavy work load. I was kept busy with three children, mostly grown up and at university, but one teenager still at home, and working a 28-hour week as a medical secretary in a nearby hospital.

I noticed I was becoming increasingly breathless when walking our golden retriever dog and then found a lump in my neck below my chin. I decided to visit my GP. 

Initially I was told the tiredness might be my age (then 54) but after two further visits to the surgery, the GP measured the lump in my neck and decided it was getting bigger. A referral to an ear, nose and throat (ENT) consultant swiftly followed and a needle biopsy proved inconclusive. So I was admitted to hospital to have the lump removed under a general anaesthetic, along with some saliva glands.  This was all sent off for further analysis.

In July 2000 I was diagnosed with low-grade follicular non-Hodgkin lymphoma and was put on a six-month course of chlorambucil

Christine

In July 2000 I was diagnosed with low-grade follicular non-Hodgkin lymphoma, stage 3 and referred on to an oncology consultant. CT scans had revealed some suspect lymph nodes in both sides of my abdomen. It was decided I should receive a six-month course of chlorambucil, a type of chemotherapy given in tablet form.  This entailed very regular visits to the oncology clinic to check blood results. Unfortunately, due to a low white cell count and neutrophils, I was not able to complete the full course of six months. The fortnightly dose of tablets was cut to 10 days and the full six-month course was cut down to five months. 

By 2002 I felt increasingly better with more energy and had returned to work. I found that gardening, walking, sailing and cycling helped to keep me fit. I felt good for a number of years and my regular visits to the oncology clinic were eventually reduced to yearly.

In the spring of 2016 I noticed I was developing a drooping right eyelid. This progressed over the months and I found I was having to literally hold and pull it up in the evenings if I wanted to watch TV or read. I paid a visit to the optician who found nothing wrong and said my sight hadn’t deteriorated.

The eyelid got worse. My family commented on it and my youngest daughter, Sophie, noticed I had developed a small oval shaped lump to the outer edge of the eyelid.  This became quite prominent and I found I was unable to use eyeliner over the lump.  I went back to the optician, who was more concerned with the drooping eyelid than the lump and suggested I visit my GP.  At this point I didn’t suspect lymphoma, so did not contact the oncology department.

After my visit to the GP I was referred to an eye surgeon for a possible corrective ‘cosmetic’ job to the eyelid.  The surgeon felt that the drooping eye-lid was probably an age-related problem (I was now 70 years old), and that the lump might be a prolapsed lacrimal gland (the tear gland). However, while he applied for NHS approval to perform ‘cosmetic’ surgery to the eyelid, he arranged a CT scan.  This showed a suspicious lump retreating behind the eye socket. So I was back in for day surgery to perform a biopsy.

The following day, I developed a lovely boxer’s black-purple eye and swollen cheek. Nevertheless, a week later I went on a pre-arranged holiday to France with my husband, with advice from the surgeon not to swim because of possible infection.

In 2016, what I thought was a problem with my eye was eventually diagnosed as lymphoma of the lacrimal (tear) gland

Christine

On our return the surgeon informed me that the lump was a lymphoma of the lacrimal (tear) gland, which is quite rare.

I was referred back to the oncology team, and a daily 12-day course of radiotherapy was arranged.  I was invited to the hospital to view the treatment room and meet the staff. It was decided that I would not require a face mask; instead I would wear a lead eye shield in my right eye whilst receiving the radiotherapy. A tracing of the right side of my face and eye was taken, which was used each time to mark out the area around the eye to be treated.

The type of radiotherapy used is known as orthovoltage X-ray treatment. The X-rays produced by the orthovoltage X-ray tubes do not penetrate deep into the body, so are useful in treating shallow tumour. The treatment involved lying on the bed, having anaesthetising drops inserted into the right eye and then a small lead eye shield (over the pupil area) inserted. I found this rather fiddly and slightly uncomfortable, but the staff were first class and minimised the discomfort. The unit itself was pulled down from the ceiling and the arm of the unit placed on the marked area on the side of my temple. I then had to keep very still for a few minutes while the radiographers disappeared behind a screen and pressed the button. I was not allowed to drive for 4–5 hours after each treatment so my husband became my chauffeur.

I returned to the oncology clinic for several check-ups and have now  been extended to a six-month review. I am really pleased with the outcome and fingers crossed the lump won’t return.  I have been advised that if it does return I will not be able to have more radiotherapy, but alternative treatments would be looked into.

I count myself fortunate to have pootled along happily for sixteen years and am hoping for many more!

Christine

I am due to see the ’cosmetic’ eye surgeon, but I already know that I will not be requiring the eyelid lift!  As he told me on my last visit, it was the weight of the tumour that was dragging the eyelid down.

When I am tired (fairly often with three young active grandchildren visiting regularly) my eye feels and looks droopy, a little like a ‘lazy’ eye, but otherwise I have no after effects and no problems. I count myself fortunate to have pootled along happily for sixteen years and am hoping for many more!’  

February 2018