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Ronny Allan
When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results. I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get. Has it grown, has it shrunk? What if …….
Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling. How can you conquer this fear or is it just something you have to live with?
Personally, I look at things more clinically than the average person, perhaps that’s just the way my brain is wired. For example, I try not to be concerned about results over which I have little control once the test had been completed. I sit tight and don’t try to second guess what the doctors will find. One of the clichés I use is “Don’t cross the bridge until you come to it” and I think that is great advice. However, during the discussions which then ensue in such threads in my group, it appears some people need a little bit more help. Some people call this “Scanxiety” (I don’t). The original meaning of this proverb was to deal with a situation when and not before, it occurs. If it occurs at all. I accept not everyone will be able to deal with this in a similar way but if you have this issue, here are 8 tips that might help you feel less anxious waiting on results.
1. You’re not alone! Remember that your feelings are normal.
2. Don’t assume the worst. Easy to say but think about all the other tests you’ve had done where there was suggested stability or even less tumour load seen. Remember, your doctor is not ordering scans simply to find tumours. They are checking for stability while hoping for a reduction too. Think of imaging surveillance as a good and positive thing!
3. Take control! When your doctor orders the tests, keep a record of the what, why and when. Make it feel like you are in control of the process.
4. Neuroendocrine Cancer: turn surveillance into a positive – click to read
5. Be careful online. Googling stuff related to your situation can often produce negative results which worsen your anxiety.
6. Keep busy and keep normal. Take your mind off the waiting, keep doing all the things you need to do. Don’t cancel stuff you would be doing, don’t change your routine, that will just make you focus more on the waiting and worrying.
7. Take a walk. Go for a walk, scenic if possible. Regular exercise has been shown to help with anxiety. You don’t have to climb Mount Kilimanjaro or the London Marathon to get this benefit.
8. Ask others for help, write what you feel. This is where my group helps I guess. Talking with people who have been in the same situation as you can help you feel more connected, more empowered, making you feel more normal.
Remember, don’t cross the bridge until you come to it. If you still find yourself trying to cross, go back to number 1 and start again.
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Good advice Ronny ✅. I will admit that I used to worry in the beginning because I didn’t have a clue what I was up against, but when you look at the big picture you can’t change what your scans are I used to worry so bad I would cause myself very bad headaches. So a doctor once told me that it is what it is and you can’t give it away so need to accept it,we will deal with the bump in the road when it happens, and this is coming from a doctor that had cancer and he beat it.
Lorraine
I’m 14 years into tumors getting scans every three months. 90% of the time my tumors have grown and it was no big deal just a discussion about what size can they get to and I can still have surgery . . . And then on one scan my tumor had jumped from 5 cm to 13 cm and I was told “inoperable and a year at most to live” . .. That statement from my oncologist threw me against the wall. It took a few weeks for me to get a second opinion and when I did I heard I could have surgery, risky surgery but I could get it. Since then my anxiety about scans has gone up. Worrying another one of my many tumors will “take off” . . . I was fortunate in August 2020 when I got to that bridge and was told I had a little more time to cross it.
I do the same my saying is “ It might come back or progress but I’m not waiting for it “ I’m of the opinion that I need to live each day to the fullest do my best not to stress out about things I have no control over. I’m fortunate to have that mindset I guess but it did take a bit of work to get there. Love the post Ronnie !
I’m clinical about my rest results as well. Nothing I can do to change them and only interested in the facts. Thanks for your use of the word “clinical”. It is a great word to summarize my feels that I have being looking for and I will be using. Thanks
Thank you for your excellent dose of calming common sense. I may need to read this article often on bad days, it’s really so well said!
Thank you for all your articles and support! Every 6 months I get my scans. I try not to think about it but a month before I stress and worry. In 2017, frustrated about my abdominal pain and after walking out of the ER twice in a month with IBS like symptoms, I asked my GI for a colonoscopy. He found a tumor and told me to find a surgeon asap. I found a local Neuroendocrine specialist at MOFFITT in Tampa. I started doing research and found your blog and newsletter which helped me so much. It’s been 4 1/2 years since my colon surgery.
Such good , common sense advice Ronnie. So much seems out of control that it really is , I think, better to just try and stay as calm and ‘un’ anxious as possible . A week of relatively calm thoughts has to be better for the mind than a week of worry, when we can’t control the outcome we are waiting for. – easier said than done, but love your tips. Thank you