Scanxiety!

[kri312]

It's that time of year again where I am looking for some moral support to get me through the week - I have my annual scan Friday! Fortunately I get to see my doctor for the results immediately following. 4 1/2 years ago I had a RL lobectomy and RU wedge due to 2 small stage 1 NSCLC nodules (incidental finding 50 yo female). Scans have been thankfully clear since. The fear and anxiety that grows leading up to these visits can be so overwhelming - the yin and yang conversations I have with myself would question if I need to be locked up! I do see a therapist on occasion however I don't want to this week because I don't want to talk about these feelings - sometimes it is easier to ignore them! Do these days/weeks leading up to these visits ever get better? Do you ever feel like you are free from fear?

[Jenniferroseolson]

”Scanxiety” is so common. My therapist recommended I don’t even “try” to sleep the night before scans but rather watch movies or tv on the couch until I drift off while my mind is distracted. However, I haven’t done that very often since my first year living with Stage IV NSCLC (age 44 at the time). Once the chemotherapy treatments began to show that the cancer was shrinking at first and then not growing, I was able to rest a bit easier. I have now had quarterly scans for seven and a half years. Three years ago, I was so surprised when my oncologist told me the scans did NOT show stability. Thankfully, I have responded well to immunotherapy and am stable again. I can’t say that I am never fearful, but to answer your questions directly, I did find that it did get easier and that I don’t live each day in fear. I have been receiving chemo or immunotherapy every month since diagnosis and doing what I can to stay healthy. Unfortunately, for many of us, lifestyle won’t necessarily correlate with a terrible diagnosis; I don’t beat myself up too much about enjoying a glass of wine or desserts or such.

Meanwhile, I have been working with my therapist (she is an oncopsychologist) to focus on how to live well with cancer right now and try not to pre-grieve the bad scan. This is such a challenge, and I expect you will lose a lot of sleep this week! I hope you can distract yourself by doing things that you love-maybe schedule lunch with friends or take a walk to admire the fall foliage. And if you aren’t comfortable bringing it all forward now, go ahead and schedule with the therapist for a week or so after the scan results. As I told a friend yesterday, I don’t know anyone who couldn’t benefit from therapy.

Best wishes!

[kri312 in reply to Jenniferroseolson]

Thank you for this....wise words for sure. I actually told my therapist next week would be better! I am glad you are doing well and wish you continued years of good health. I know I need to learn to love and enjoy today - just during weeks like this need a few more reminders. Each day is a gift!

[448690 in reply to Jenniferroseolson]

as I had brain metastasis stage 4 lung cancer. I usually get sent every 3-6 months for scan. My oncologist office is the worse for returning calls. Basically being ignored. My scananxiety goes through the roof. I have to wait 7 days until it come up online and then decipher it myself.

[kri312 in reply to 448690]

That must be so hard - what I really do love about my MD is that is get the scan and an hour later I see him. During the peak of covid I had to do it your way and I almost couldn't function for the week! Wish you continued clear scans!

[Jenniferroseolson in reply to 448690]

that is unconscionable for an oncologist’s office. If you are in the US, I believe it is also illegals since the implementation of the Cares Act that requires notification of patients and doctors at the same time. (Something like that). As another reply notes, perhaps you should schedule in person with your doctor the same day as the scan. I am so sorry you have had to endure such long waiting!

[JanetteR57]

thanks for voicing what so many feel but congratulations on your progress and good news your nodules were detected early and able to be surgically removed. I was pushed into annual scans very quickly after my 7cm tumour was removed with upper left lobe on 16 Dec 2010 and didn't gt results/diagnosis until 13 Jan 2011 but as I was 52, young, fit, never smoker and started to recover well, went into annual chest x-ray from Nov 2011 onwards. I've had a few scares since and investigations but like you, thankful for every day. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things into better context rather than getting fearful at every potential symptom/sign that it might be back (real or imagined) and 'anti-cancer - a new way of life' by Dr Servan Schreiber as a way to better understand changes I could make in my life that may offer better odds and a healthier lifestyle in future - his is an amazing story. Neither book although written by medics are a drudge read but informative, educational, interesting and enjoyable or they were for me.

I went to counselling a couple of years after diagnosis after a couple of hospital stays and suspicion of recurrence but spoke about all sorts of things including wanting to do more fulfilling things with my life, having had such a wake up call. some people imagine counselling will only mean discussing the condition or symptoms but it can explore all sorts of life aspects.

Sadly I've lost too many people since my diagnosis - friends, colleagues, relatives - many from sudden and unexpected deaths from undiagnosed conditions so now view life a little differently than I used to - none of us is guaranteed a healthy long life although we all assume that will be our case - but making the most of what we have, valuing the things we love in life and those who matter to us are much more important than chasing possessions, wealth or status - in poor health, even the simplest things can be a challenge so hang onto yours! wishing you good results and many more anniversaries to come... good luck.

[kri312 in reply to JanetteR57]

Thank you and hopefully I can be a tremendous support to others one day as well! Fingers crossed....

[RRR737]

I can only speak about my personal experiences. I'm 7 years good on my lower RL lobectomy and 6 years good on my middle LL lobectomy. Does pre scan/results ever get better. For me after I passed 5 years I think they got some better but they have not gone away. I still go through the anxiety - worried what the results will tell me. Wish I could tell you that I have reached a point where I don't worry and/or get anxious. Others may have totally different experiences. As I said, they seem to get some better but I still have that little voice in my head saying, "What if they find something." I do wish you the very best. We are survivors and we can handle anything that comes up. God Bless.