Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there’s worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger person.
It’s known that the lower grades of Neuroendocrine Tumours (NETs) have fairly good outlooks but there are still many factors at play, including stage, primary location, grade and differentiation, functional/non-functional, pre-existing comorbidities, access to the latest diagnostic and therapy options, even age is a factor. It’s difficult to find another person who has had the same experience in diagnosis, treatment plan and outcome. It’s a fact that despite similar diagnostics, some die sooner than others and that is always sad. At the time of diagnosis, most people with lower grade NETs don’t really understand that. They are just like any other cancer patient being told they have a life-threatening disease and life is about to get difficult.
So here is a fact and a confession. For the first few years, I worried about dying well before my time. I thought about funerals, I thought about services, I even started to think about what music should be used. I cried at those thoughts, more than once.
I offer you 3 key messages if you feel like this (…..and these are in hindsight):
- Remember it’s normal to feel this fear and that it should lessen over time,
- Focus on activities and relationships that make every day meaningful,
- Talk with your health care team, especially if you feel anxious or sad often and the feelings don’t subside over time.
Looking back, there appeared to be two phases to the reaction to a diagnosis. Firstly, there is the initial shock and for some there could also be other emotions at play including denial. This stage is normally short, but I guess it could go on for some time, perhaps months, longer for some. And the phases might overlap.
The 2nd phase normally lasts much longer, perhaps years in the case of the lower grades of metastatic NETs. This is where you gradually realise you can be treated. Even in stage IV scenarios where it is said to be incurable, it is still treatable, something you won’t find in other cancers, particularly those more aggressive. More NET specialists and Centres of Excellence will appear, other treatments could become available that were not there at diagnosis, data on prognostics is more defined, guidelines are gradually updated to make diagnosis easier for many and surveillance becomes more efficient. At some point, many people will move significantly from the dread of the diagnosis to a position where they just get on with their life, alert to the risks but content with their own oversight and that provided by doctors. Still, some fear may still simmer.
These feelings and fears of dying normally recede. Expectations can’t be guaranteed because no one can give you that, but it can help to put this in some kind of realistic perspective. Most people find their own inner strength and their ability to cope and chart a way forward. Some need extra help. For some, joining a patient group is helpful and this brings them into contact with other NET patients where they compare notes. It’s very important not to compare apples with pears, i.e. grade, differentiation, stage, primary location (i.e. all the factors I mentioned above), everyone is different.
After 15 years, I’m “reassuringly stable” with “no evidence of progressive disease.” It’s OK to be scared at diagnosis, it’s OK to still be scared after diagnosis – but it’s also OK to have hope.
In the early days, I thought I was going to die. I didn’t.
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Ronny
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Ronnie, great column. I’ve been working my way towards “getting on with living” after having been diagnosed at 46, treated with surgery (thought it was gone) and then dashed on the rocks when a surveillance scan at 56 showed stage IV/Grade 1… a “chronic disease” as they say. Now a year on, dealing with Lanreotide injections and just accepting this as my new normal.
I’ve used much of the anger/frustration energy to drop weight and get in better shape… now just figuring out how I balance work/life in the pre-retirement years (and how long that should last).
Your blog and website has been a great source of information. Words from yourself and others have been a comfort and inspiration.
Thanks Joe
I too thought I would be dead in a year. I had plans to buy an acid green mustang that was for sale near me, and to eat all the candy and drink all the irish cream. I didnt get the mustang (it is still on the someday list) ,,, I sure did eat a lot of candy and drink lots of irish cream. 5 years later, I’ve had to work hard to lose the weight that I gained over the first couple of years, but I’m feeling great and living stable. I have been a very lucky person and have chosen to live life to the best of my abilities.
Make sure you send me a photo of you driving that acid green mustang 🙂
Thank You Ronny, this is exactly what I needed to read today. You perfectly described what I’m feeling/ going through being newly diagnosed with Neuroendocrine cancer and gave me hope for a brighter tomorrow. Your Facebook group has also been an invaluable source of information and support. Thank You so much for all that you do, it is truly a blessing to my family and I.
Your blog, “I Thought I Was Going To Die. I Didn’t,” particularly resonated with me. You describe exactly how it feels when first diagnosed and afterwards. By revealing your feelings and writing honestly about them, you help and offer comfort to those newly diagnosed with cancer. Thank you Ronny.