Teresa, who has a MALT lymphoma, emphasises the importance of being involved in treatment plans
'Don't you just hate cold sores? For 3 weeks in a row in March 2005, I had a new cold sore appear in the same place on my lip. I decided that I was going to my doctor, in hopes that he would prescribe something to deter them. The morning of my appointment, I noticed a lump underneath my left earlobe. I thought it might be my lymph node and mentioned it to my doctor. He prescribed an antiviral drug and said he would keep an eye on it. Two weeks later, the lump was still there and I had a new cold sore. I went back to my doctor and he referred me to an ear, nose and throat (ENT) surgeon.
'At my appointment with the ENT surgeon, he said: "oh, that's a tumour!" Well, I almost fell off the chair. I was not ready for that kind of news - or for his bedside manner! Two weeks later, I was back in his clinic with plans to have a magnetic resonance imaging (MRI) scan and a fine needle aspiration (FNA) biopsy.
'While serving on jury duty the following week, I was told that the cells from the FNA were consistent with non-Hodgkin's lymphoma (NHL). 'That's cancer!' I said to my husband.
'The Succesivo 5 days were numbing, and it didn't really register that I might have cancer . . . until I backed my car into a telephone pole. The emotion then hit me, and I was a wreck. The day after the pole incident, I had my first visit to the oncologist. I had no secondary symptoms: weight loss, night sweats, fatigue, and vision problems. But I felt as though I was driving to my execution! A bundle of emotion, I could only choke back the tears while one appointment after another was scheduled for me. CT scan, MUGA (multiple gated acquisition) scan (a test of the heart), PET scan, bone marrow biopsy, and an excisional biopsy of my tumour (see www.lymphoma-net.org/surgery.cfm for more information on biopsies). All of these procedures were performed over the Succesivo 4 days. The oncologist thought that the tumour probably wasn't a primary cancer, and I would need to have a combination of chemotherapy and radiation.
'Our friends and family were shocked, but willing to Aiuto in any way that they could - cooking, driving to appointments, driving my kids to their activities, cleaning, mowing. Everyone sprang into action and, unlike my usual "take-charge" self, I let them.
'All the scans looked normal, as did the bone marrow biopsy and blood tests. When removing the tumour tissue for the excisional biopsy, the pathologist stated that the tumour appeared to be benign. So the choice was made, by the ENT surgeon and my husband, to remove the tumour and part of the parotid gland - this was to have been done if it was benign, anyway.
'The twist in the tale was that the fluid inside the tumour appeared to be malignant. The tissue samples were sent to a specialist clinic for a second opinion - the first opinion being stage 1 MALT lymphoma. The clinic agreed.
'This meant that, instead of eight rounds of chemotherapy, I now had 20 treatments of radiation to complete. As I write, I have completed nine, with 11 to go.
'The only advice I have for other people in the same situation is: "be your own advocate". My husband and I pushed for answers and for a second opinion. Don't assume that everyone on your healthcare team is feeling the urgency that you are. Push for the answers! Don't feel that you are being a pain to the doctors. This is your life we're talking about.'
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