When I reached the 5 year mark my doctor gave me the option of stopping CTs or continuing with them annually. I didn’t hesitate, I chose to continue annually. With a stage 4 diagnosis I wasn’t convinced that it was really gone. Twelve years later I like having an annual reinforcement that things are still safe.
What did you do? Did you stop having them? Continue? What influenced your decision.
We don't have follow on CTs in UK - my annual checks involved a chest -x -ray before seeing the consultant who like yours, was happy for it to continue especially as I'd had a couple of suspected recurrences and nasty infections that had hospitalised me. I saw him once more then the year after, he'd moved hospital site so went there but he'd been called out to an emergency on the ward so the other doctor didn't see why I was still in the 'pathway' after 5 years.
Thankfully the respiratory consultant at the local district hospital agreed to keep seeing me annually after this - but only had imaging done every 18 months unless symptomatic and admitted via A&E (happened every year between 2015 and 2019). Was pleased to be called in during pandemic for a face to face appointment May 2020 and had another chest x-ray then. My diagnosis was January 2011.
You’ve had quite the journey!
With my first diagnosis and treatment nearly eight years ago and a recurrence a little over two years ago I continue to have yearly CT scans. It gives me peace of mind to know all is well and a heads up if another recurrence is happening. I believe very strongly in preventive medicine and catching things early.
I was diagnosed 9 years ago stage 1B with progression to stage 4 4 1/2 years ago. NED since start of Tagrisso 4 1/2 years ago. I have been getting a chest CT every 3 months since initial diagnosis 9 years ago, with occasional lengthening of time interval to 4 months. No mention of decreasing interval beyond every 3 months.
I wonder if it’s due to the EGFR diagnosis and that you get a TKI rather than having chemo. That’s something I would like to ask about at the next Go2 Livingroom that has an oncologist b
Hello I’m stage 1b and about to start radiotherapy having turned down a possible pneumonectomy. I’m wondering what TKI is that’s mentioned by you.
TKI is a tyrosine kinase inhibitor. In simpler terms a drug that targets a specific mutation within the cancer. Cancers mutate when the cell splits wrong and continues to split and grow.
Do you remember the model of DNA they used in middle school or high school? It looks like a twisted ladder and was called a double helix? Every molecule in that DNA has a name and an address The molecule(s) where that broke down names the mutation. (It is a bit more complicated than that but it helps me to envision it that way).
Usually the body’s immune system destroys those cells that an a reproduction error but in cancer it doesn’t. A TKI inhibits the growth of cancers that break down in certain places. They only work on cells that mutated in specific places.
Does that his help?
My husband was not given the option 5 years after having a bowel cancer operation. 5 years later he was diagnosed with stage 4 lung cancer. I would have thought these scans were automatic?
Each of these cancers has a different follow up. They’re based on observations of survivors and their reoccurrence or lack of. Years ago they set 5 years as the most common length of time for advanced lung cancer reoccurrence. At 5 years were considered cured. Generally speaking, stage 4 lung cancers are followed every three months for 3 years then every 6 months for two years because that’s where most reoccur That can vary by the driving biomarker and whether or not there have been brain mets.
In resectable lung cancer they generally only follow for 2-3 years unless the patient insists. Lung cancer is generally considered resectable only in early stage cancers.
The follow up for colon cancer is not something I’m familiar with. Sorry I can’t be more forthcoming there. Also, I don’t know if the section of lungs where his lesion developed would have been within the region they would CT for colon progression
Is his lung cancer a new primary rather than a metastasis? How was his lung cancer found? I ask because a colon metastasis would likely have a different treatment than a lung cancer primary.
Hi Denzie, his lung cancer was metastasis from the colon. He had no voice, he was told he had laryngitis, he went back to Dr after 2 weeks being no change and was told he had thrush from the tablets. 2 weeks later he paid privately and was advised he had stage 4 lung cancer, it had travelled to the voice box and adrenal glands.
so sorry to learn this. I’m even less familiar with standard of care in the UK than I am with the US. Did they do any biomarker testing to learn if it has a targetable mutation?
I wish I was given the option of having CT scans annually. I was told that getting that much radiation even once a year was not good for me. I even asked if I could get annual chest x-rays and was told no. It has been 4 years since my last CT and still wish I had the option of getting some type of screening .
Ask if you can have a low dose CT. I’m wondering if there’s some way to honestly claim a symptom of lc that might require a follow up.
Dennie, with 9+ years behind me, (2013 stage 4, ALK mutation, and NED since 2016), I still choose to continue with scans. In 2021, that scan showed a tumor in a breast that was too small to feel. (Genetic testing afterwards showed an ATM mutation that would make me vulnerable to breast and other cancers, not the usual gene that points to breast cancer)That scan helped me find breast cancer that had not spread and was at the earliest possible stage. Surgery was sufficient. I feel like scans help me now keep an eye on both cancers.
Wow. My breast cancer was found by mammogram less than 3 months after my lung CT. Also stage 1 and the ATM mutation. I was told by the genetic counselor that ATM occurs in 40% of breast cancers so I’m definitely looking into that.
My genetic testing was done in my 7th year of breast cancer so who knows if that’s my driver or not. They have me watching for symptoms of pancreatic cancer. Do they still do brain MRIs for the ALK?
I haven’t had any brain scans since a couple of years after my first diagnosis. It would make sense to me. I haven’t had one since I found out about the breast cancer. Interesting that we both had our breast cancer caught early and found out about our ATM mutation. Testing was offered to my son and two adult grandchildren. My son and grandson have the ATM mutation and my granddaughter does not. At least my guys have passed that info along to their docs and can be more proactive about their health. It wasn’t great news for them but they would rather know and be aware of any symptoms and hopefully catch things early. My mom had ovarian cancer so she probably had the ATM gene as well. Her brother had prostate cancer, another possible cancer with ATM.
Again, wow. My sister and female cousins tested negative for the ATM. Their brother had prostate cancer and was one of the familial connections needed to qualify for genetic testing. My brothers have not tested yet and they prefer not to know. I’ve learned ATM also occurs in Crohn’s disease which my mother had in addition to lung adenocarcinoma. Curiouser and curiouser.
Since I am an only child, my first cousins were offered testing. Daughters of my uncle who had prostate cancer did get tested and were fortunately not ATM. I am starting to be fascinated by genetics. Five first cousins (on mother’s side), my mother and I were all diagnosed with autoimmune diseases.
I’m at 7 years and am going to do continue annual CT’s for peace of mind.
Thank you! I’m hoping to encourage other to do the same. Hoping your answer will make a difference for someone.
I am also still having CT scans even though I have been in remission for 5 1/2 years now because I want to make sure that I am still safe
Thank you everyone!
Can you believe I’m still having trouble staying off cigarettes. 
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