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Do You Still Get Nervous Before Every Scan?

Do You Still Get Nervous Before Every Scan?

I had coffee recently with a close friend of mine and during our nearly three hour conversation that covered topics ranging from our kids to husbands to vacation plans to movies, I happened to mention that I have my quarterly scans coming up soon. She then asked me if I still got nervous before scans, clearly expecting the answer to be “not really.”

Others Just Don’t Get It

Since I was diagnosed with stage IV non-small cell lung cancer a little over four years ago, my friends and family overall have been extremely supportive. However, it’s often very hard for them to understand what it’s like to be part of the growing group of people who are living with stage IV cancers.

I didn’t understand either until I was diagnosed. Growing up, I only knew of people who got cancer and were “cured” or more unfortunately, passed away. There were sometimes celebrations for people who reached certain milestones, such as five or ten years past their diagnosis, but for these people, cancer treatments were always a part of their past, not their present.

I am often asked when I will be done with treatment for my lung cancer. I’ve found that many people, even those close to me, frequently don’t understand that I will be on some form of treatment for the rest of my life. I was very fortunate to have been able to stay on my first targeted therapy medication for my EGFR mutated lung cancer for almost 3 years and upon progression, qualified for a newer targeted therapy that I have now taken for a little over a year. These medications, while wonderful, don’t cure my lung cancer; they just allow it to be suppressed for a period of time.

The Scanxiety Continues

As a result, every time I go to my oncologist for scans, I worry that I might have developed resistance to my current treatment. I am certainly very happy the longer I stay on a treatment, but as opposed to feeling more confident the longer a treatment lasts, I worry instead that its effectiveness is going to end soon. When I hopefully celebrate my five year cancerversary at the end of this year, I will be celebrating the uncommon situation of a stage IV lung cancer patient living that long; however, I won’t feel safer because I have passed the five year mark.

So to answer my friend’s question — yes, I still worry every time I get a scan. I worry if this is the time when my luck will change and my current medication will no longer be suppressing my cancer. I worry that I’ll need to change treatments and if so, it’s not very clear what my next treatment option might be. I just hope I don’t need to figure this out too soon!

Have you experienced a similar worry to Ivy? Share your story here.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Sunny
    10 months ago

    I can really indentify with you, I am stage IV adeno and Aug of this year is 8 years since diagnosis. I am currently at almost 2 years since end of treatment. I really get extremely stressed starting about 2 weeks before the scan, which is every 6 months. I did have a scan that showed progression at about 4 1/2 years and it really is the worse news and can feel even worse if you let yourself think your cured. Now I am braced for bad news every time I go and am usually so relieved when they are good and I am so exhaused from the stress I sleep the whole hour and a half drive home. My husband always comes with me, I don’t know what I would do if I was alone. One thing that helps me somewhat is I keep reminding myself that if I do have progression maybe there is something new we can try that will keep me going for a few more years. Stay strong everybody, God Bless us all!

  • Margot moderator
    10 months ago

    Hi @Sunny, thanks so much for your comment – I’m glad to hear you can have your husband there for support. And thank you for sharing your thoughts with us – I am sure others here can relate! Thinking of you. Best, Margot, LungCancer.net Team

  • mlb2
    10 months ago

    I think the days before a scan are so stressful. I can barely function sometimes because it is always on my mind. Depending on that scan, your whole life can change. I have recently asked my dr to give me a 3 day prescription for xanax and I explained why. They just do not think in the same terms we do. He did say of course I will. So, I take one a day, usually not till toward evening cause I can keep busy all day and it is closer to bed time so I can sleep. It helps me tremendously. Ask your doctor. Most he can say is no. I like three and usually take 2. Extremely mild but since I take no onther meds besides bp, they really help me to relax. Just a thought.

  • Margot moderator
    10 months ago

    Thank you so much for sharing @mlb2 I’m glad you asked your doctor and advocated for your needs! So glad that you have found it helpful. Thinking of you. Best, Margot, LungCancer.net Team

  • bdcreati
    10 months ago

    Thank you. I have my 6 month scan coming up on the 17th of this month. Trying not to think or worry about it, but it is always in the back of my mind

  • Margot moderator
    10 months ago

    We hear you – please let us know how the scan goes if you’d like to – wishing the best! – Margot, LungCancer.net Team

  • kathandcha
    1 year ago

    Ivy, this is an excellent write up by you. This is exactly on point of how I feel and what I’ve been going thru. I’m only coming up on 2 yrs of being diagnosed and treated with stage lllB nsclc. I see the comments of people going thru this a lot longer than I have, which adds to my hope! Thru all this I’ve remained strong and happy and positive but the pre scan is when my anxiety kicks in. Thank you sooo much for posting this~

  • Ivy Elkins author
    1 year ago

    Thanks so much! The anxiety usually hits me a day or two before the scan — otherwise I try to live in the moment as much as possible and stay positive and happy as well!

  • Palmdalegirl
    1 year ago

    This is so true. Because I had a Lobectomy and a wedge resection a year and a half ago, my family thinks I’m “cured. They don’t understand that I’m far from being cured, and yes, I too get nervous before each scan, which is every 6 months for me. I get scanned, blood taken, and then I see my surgeon, and in between those visits, I see my Oncologist. I had a scare recently and had to go get rescanned after 3 months, and it hasn’t grown, so they’re watching it for now. But family and friends don’t understand what we go through. Recently I was talking to my daughter in law, and I mentioned something about the cancer, and she had the nerve to say to me”Oh Brenda, you don’t have cancer, they removed it from your lung with your Lobectomy “. I was so angry. Anyway , they don’t understand.

  • bdcreati
    10 months ago

    I know how you feel about family thinking you are cured. It has only been 9 months since my lobectomy and my family just believes everything is over and done with.
    I don’t want to sound pessimistic, but I’m not naive either. My fight with this will go on for a while

  • Ivy Elkins author
    1 year ago

    Thanks fo your message. I agree; it’s so hard when friends and family don’t completely understand. All we can do is keep trying to explain our journeys to them, I guess, Best of luck to you!

  • dianem
    1 year ago

    This is so on point. I am stage 4 metastatic lung cancer at 5 years. Surely I’m grateful for every day. But When I get scananxiety, my daughter and others (who I know love me very much) tell me I’m a worrier. I think once you have been blindsided by a cancer diagnosis as most of us are, every ache and pain, every new scan, makes us anxious…how could it not. I keep trying to tone down the worrying and focus on my blessing in getting so far, but I continue to be a work in progress. It’s reassuring to know I’m not alone. Keep strong and God bless.

  • Ivy Elkins author
    1 year ago

    Thanks so much for your message! It’s so hard not to worry — I’m a work in progress as well. Best of luck to you in your journey!

  • paulab
    1 year ago

    Ivy, thank you so much for sharing your story about anxiety before each Scan. You have expressed it so well and I plan to show this to my friends who don’t quite understand. My path has been similar to yours as I was diagnosed out of the blue in Oct 2013 with stage IV NSCLC. As you said, We are thankful for over 4 years but always wonder what is going to happen next.
    I wish you continued success with your treatments.

  • Margot moderator
    1 year ago

    Thinking of you @paulab, thanks so much for commenting and being a part of our community. Please do keep us updated – how have you been feeling recently? Wishing you the best. Warmly, Margot, LungCancer.net Team Member

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