Wow, after I finally publishing that last post about living with tumours ("Sometimes everything is not okay.."), Huffington Post published an interesting article called "Why You Should Stop Calling Thyroid Cancer 'Good Cancer'". After reading it I realised how this is similar for many people with paraganglioma.
Apparently thyroid cancer is nearly 100% curable. While paraganglioma have a much lower cure rate (malignant paraganglioma and recurrent paraganglioma are incurable), there are many similarities between the two in how they are viewed as "Good Cancers".
The Huffington Post article says that judging cancers based on their cure rate trivialises the issues faced by people who live with them. It is the same when people look at the 'survival' rate. As a member of an international support group for paraganglioma and pheochromocytoma (paras in the adrenals) I can testify to that. We have many people who are living with paraganglioma and dealing with all the associated costs. These "costs" are not just financial, they are also mental and physical.
Most people with genetic mutations and paraganglioma have to go to specialist centres for scans and blood tests between 1 and 4 times a year. For those who live away from the big centres, the cost of accommodation and travel adds to any medical bills their insurance won't cover. Add to this the anxiety about being away from home, the travel, and the disruption to routine. For many the travel can increase any pain or symptoms caused by the tumours. For all, there is the worry about results from scans and blood tests; that flip of a coin that lets you know if you can forget about your tumours for a while, or if you have to start treatments or go in for surgery, again.
As with the people discussed in the Huffington Post article, people who survive paraganglioma and have a genetic mutation will live with the worry of having the disease for the rest of their lives. Recurrence is common when there is a mutation involved. For some of the mutations, metastases are also common. These people are often told how lucky they are, how they should "buy a lottery ticket" as they have obviously shown they are a winner by having such a rare disease, that they should be thankful it is not a 'real' cancer. Really? I wonder if they would say the same thing if it was them or their child or spouse who was dealing with this.
Here is the article:
Why You Should Stop Calling Thyroid Cancer 'Good Cancer'
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