Sunday, March 1, 2009

lymphedema

My mother had her lymph node removed on one side of her body to prevent her cancer from metastasizing. This is when a malignant tumour's cells spread throughout the body and cancerous cells begin to grow elsewhere. In this situation, the primary cancer will spread to other body parts. My mother-in-law, for example, had a primary lung tumour. It spread through her lymph nodes and she had a brain tumour which killed her within 11 weeks of diagnosis. An unfiltered cigaratte smoker, she had a high risk.

My father's brain tumour was benign, in that it was not going to spread. However, the cells end up taking the blood and oxygen supply from other parts of his brain and he succumbed in February, 2007, after having his original brain tumour removed in March, 2003.

Mom’s leg was incredibly swollen. Without the lymph node draining her system properly, the fluid built up. I did research on massage-type lymph node drainage on the Internet, but no one performs this specialized treatment to a patient in her home here. She was too ill to go anywhere for it. Treatments include elevation of the body part affected, compression, and manual lymph drainage. Mom’s case manager arranged for a compression wrap that supposedly kept the water down. She was to massage her leg daily. It did not help. It was uncomfortable on top of her other pain, but she refused pain medications.

She was too tired to do massage herself, and I was afraid to massage her leg for fear I would hurt her. This condition was a result of treatment, and is called lymphedema, but we had been given no information on the risks involved in taking out the lymph nodes. There was no proof that the cancer would enter into her lymph nodes; it was a precautionary measure that proved to be contraindicated.

Once the lymph nodes have been removed, or damaged with radiation, twenty to twenty-five percent of patients develop lymphedema within twenty years post-cancer. This risk was not explained to her. Patients need to be warned that there are risks of blood clots, or back-ups of the clear lymph fluid in the skin tissues, which causes painful swelling. Lymphontario.org provides more information about this. Catherine Cotton (lymphontario.org) says that in order for such a procedure to be successful, there needs to be accurate assessment, a comprehensive treatment approach, and ongoing education and support for patients and their caregivers. This did not happen in our case. Our GP was unaware of either her pain, swelling or these treatments, and I spent many hours trying to research solutions. Mom was in such needless pain due to this surgical intervention. I felt incredible stress, since I could not figure out how to help her. There is a huge risk of complications with this treatment and we were totally in the dark about its implications, despite research and the best practices clearly being available.

At some point, a treatment plan may need to become a palliative care plan. This is a crucial part of the process and must take into account the patient and his or her family. Unfortunately, my mother went to oncology appointments alone and may have had some dementia due to the invasion of her cancer. She had hearing problems, and I am not sure that she heard or understood what she was told. Information was withheld regarding etiologies, morbidity factors, survival rates, and consequences of medical treatment, especially associated with an elderly patient. Medical personnel did not ensure that a very deaf woman, in the aftermath and shock of a cancer diagnosis, understood the information presented to her and the treatments she faced. My parents were exploited by a system that did not take the extended family into consideration and failed to determine appropriate treatment for failing seniors.

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