Dear family and friends,
We are writing to you with an update on my (Anne’s) health. On April 18 I was diagnosed with an advanced form of a rare kind of cancer, called Neuroendocrine Tumour (NET) cancer (sometimes also called carcinoid cancer).
My health has been declining for the last six months or so. In September of 2015 we began to notice that I was losing weight, and was not altogether well. Over the next several months we began to ask some questions about my health and tried to get a sense of what could be the cause of my symptoms and difficulties, ruling out various things in the process. In January, we began to suspect that endometriosis (which was diagnosed surgically ten years ago) might be back and causing the pain, discomfort, and other symptoms, including continued weight loss, and we began making plans for treatment. On April 13 I went in for surgery to identify and remove endometriosis. The doctor found a little endometriosis, but not enough to satisfactorily explain all of my symptoms, and when he went looking for other possibilities he noticed my appendix was inflamed, so performed an appendectomy. They sent my appendix and some other tissue for testing and they revealed the cancer. I had a 4.5 cm Grade 1 malignant endocrine carcinoid tumour in my appendix, and another 1 cm tumour metastasized in my left pelvic wall. We do not know for certain yet where the cancer originated and expect to find more tumours. The fact that it has metastasized out of the GI tract and into my pelvis means it is an advanced form of the disease. Grade 1 means it is slow growing, the best news. Judging from the size of the tumour I’ve probably had this cancer for about eight to ten years – it grows very slowly.
It is a very rare kind of cancer – many doctors have not heard of it, and it requires specialized care. There are about two dozen specialists in the world, and none in South Africa, and so we need to seek treatment elsewhere; while there are doctors here with some experience, I have an advanced form of the disease and will need a highly experienced team who focuses on and understands this kind of cancer. We are currently planning to move to Philadelphia to receive care through the University of Pennsylvania’s Penn Global Medicine Program. They have specialists and a clinic set up to care specifically for this kind of cancer and are able to deal with our visa/immigration issues (I am Canadian with no status in the USA).
We are unable to receive treatment in Canada; while there are specialists, Canada’s social medical coverage means I would need to wait three months before being covered for treatment. There is no easy way around this, so we would be struggling against the system to get the care I would need and it would rapidly become very, very expensive.
Coleman’s family is from just outside Philadelphia, and so we will set up our ‘home base’ in Bryn Athyn, at their house. Our children will be able to have stability there with loving care from grandparents, aunts and uncles, extended family and friends, and Coleman will be able to focus on helping me as we face this.
We are currently in South Africa finishing initial tests to determine the extent of the cancer. We will stay for another week or two until these initial tests are completed and then we plan travel for further testing, consultation and treatment.
We know that many of you would like to know more, and would like to know what you can do to help. We’ve set up another page on this website called “Cancer” where you will find information about my condition and the disease itself, with resources from a variety of sites. You can also check the page called “Support Us” where you will find prayer requests, and some ideas on practical ways you might be able to lend a hand.
This is difficult news and we are facing a challenging time ahead. We are very grateful for your love, support, care and prayers, and will do our best to keep you updated.
Anne Grace, Coleman, Samuel and Eleanor.