LilyMir

Sorry to hear about the series of misfortune, sounds familiar. I too was diagnosed when a CT for my head came back clear but with an incidental finding of cancer in an upper lobe. As stunned as I was, it actually was visible on another scan years ago but the radiologists completely missed it giving it the chance to grow into one lymph node. Had lobectomy and adjuvant chemo and now on Tagrisso. I am hearing Tagrisso is being offered as adjuvant for EGFR exon-19 patients even for early stage, so ask you oncologist and consider second opinion if you do not feel 100% confident of the plan following surgery. Lung cancer very often comes back so adjuvants seem quite important (depending on situation of course). I hear you too about your wife being injured, what timing! My husband had 2 kind of serious health scares since my diagnosis. Life is very strange sometime, both of us youngish. Welcome to the forum and good luck!

Thanks for sharing your experience @RJN. I did not know about the chemo component, as the limited info I had read suggested it was just multiple vaccine injections with little side effects for this one but maybe I missed something sinceI was not reading extensively. I am not sure if the 'doubt casting' was a comment addressed to me since, as a scientist and university Professor, that is something that is the antithesis to my life long knowledge and career. Press releases of a for-profit company on commercial TV station is something one looks deeper into (difference in scale of impact was palpable when I compared 'TV blurb' with their actual published data). Even my oncologist discusses such angles with me when we talk about any new medication or trial. Me wondering about politics of this is not doubt, it is prudence as similar vaccines have been approved and used in multiple other countries for years but I never heard about them on TV, at my cancer centre, or any literature given to me here. Just my 2 cents.

Thanks @Karen_L, modest results compared to what I saw on media but good news nonetheless. Here is to hoping such therapies will one day become a cure.

Indeed vaccines are one type of immunotherapy. While a drug like Keytruda is part of immune checkpoint inhibitors, vaccines introduce antigens. A nice summary may be here for those needing some info: https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-immunotherapy#:~:text=The different types of immunotherapy,Oncolytic virus therapy I don’t know if this is hype because the developer was a European company vs a country to which the West is hostile. Lung cancer vaccines existed in Cuba for a long time, e.g. CimaVax-EGF, so it is hard to discern politics from scientific breakthroughs. I need to learn more. Will update if I get to know more details. Much of the info I saw on this new press release so far is layman level.

Cuba for long pioneered cancer vaccines but this one comes from France and targets patients with failed first and second line treatments (advanced or relapsed): https://www.euronews.com/next/2023/09/13/new-cancer-vaccine-could-improve-patient-survival-for-some-lung-cancers-study

Round is good, better than spiculated but hope the doctors can give you a definite answer soon. I am sure the uncertainty is very stressful. Best of luck!

Did they tell you how the nodule looks like? It is not good that it grew but it is not a confirmation of cancer, only a biopsy would confirm that, or at least a PET scan can give some idea of cellular type. From your description it seems like slower growth but 40% growth is still significant so they have to confirm what it is soon. My tumour doubled (on CT) in 4 years (radiologist missed it the first time but error was exposed after second scan) but it was an aggressive type of cancer somehow and tumour was in fact much bigger than imaged suggested once my lobe was removed and sent to pathology. The key for curative treatment is early intervention so don't let them dismiss it until it has grown much.

Hurray for no cancer. Now go and live your lives with your kids. After such a terrible scare ending with such good news, it must feel like a new lease on life, congrats.

Happy Birthday! Glad your wife is on the mend and things are improving. I am not sure why the hospital discharged her before recovering from sedation, that sounds weird. Take care and best wishes to you both!

Hi elki, I am so sorry to hear about your situation, this sucks and it certainly is not fair being sick this young but for the sake of your young family try to hold onto hope that the treatments may actually work despite the scary statistics. The time right after diagnosis is so terrible and it often feels surreal, as if you are watching yourself from above or stuck in a bad dream. The initial shock usually improves once treatment starts. Remember that even those with targetable mutations may not respond well and on the flip side some who were given months to live are still here talking about it years later. Hold onto hope since it is the only way to live with this miserable disease. Chemo is tough but usually the body manages somehow, tell your doctors about side effects and ask for pain and symptom management specialist to be added to your team (they are much nicer humans than oncologists). Even if chemo fails, there may be many trials you can join so so some research and ask your doctor. Seek a second opinion too if the current team is not proactive. Have they considered radiation? If not, ask why not. Some here are almost 20 years post diagnosis despite the most dire prognosis so please do not give up too soon. Welcome to this wonderful forum, I am sure some stage 4 survivo s will share their experience with you soon.

What a wonderful survival story Rayj. Here is to many more 6 year updates!

Breaks my heart that younger people are increasingly getting this wretched disease! Hand in there, hopefully they caught it before too much damage occurred. It took around 6 weeks for me to get complete biopsy report and the waiting was so very hard. Your loved ones must be so worried but try to calm them with the knowledge that lung cancer treatments have come a long way, especially over the last 5 years. You won't find this info reflected when you web search, which I am sure your family is doing. All online stats and prognosis info is no longer valid. Stay positive and good luck!

If your symptoms persist, insist on imaging: Xray as minimum, or consider CT. Blood tests do not detect much and imaging is usually the gold standard. You may be suffering from anxiety and this does not help with vague symptoms but do not ignore persistent symptoms and insist on an investigation if they continue. Try to calm down and stop reading Dr. Google, it is not helpful without a diagnosis first and even then most info online is ridiculously outdated. Good luck!

The others gave you some good info, I just wanted to say hang in there, you will handle it whatever it is. I was incidentally diagnosed last year and feel your panic, my kiddo was not even 6 at the time. Take deep breaths guys and do not anticipate disaster. Wait for results and deal with them when they come. Even if it is lung cancer, there is so much in way of treatment these days. It may be that this incidental finding is a blessing if the nodules are indeed cancer as chances they can zap it early and deal with it before it becomes a much worse tumour. 1.5mm is tiny. 1.5 cm is a concern but still not that horrible. Breathe and try to calm down until you know more. Lung cancer is not what you read about when you google search it anymore, info online is very outdated so stop reading irrelevant info. Make sure they followup up soon add biopsy if doable. Take care!

Oh no Tom, so sad to hear about your pain. Damn this disease causes so much suffering even when it is cured! I hope your doctors will find a regimen that works better for you. Is your O2 dipping low day and night? Is this due to mere passing of years or what is the explanation? I feel occasional shortness of breath and find O2 dipping to 90%ish on occasion during sleep (Apple Watch report) but doctor said it is normal for people to have that sometimes unless it happened often. Please take care and reduce risk of infections so you help your lungs. Keep us posted.

I am so sorry you have to join us but welcome to this great forum! I have a different type of lung cancer but also was given Cisplatin. I hated it with vengeance as it gave me the most horrible (and serious) side effects and the oncologist promptly changed it to Carboplatin for the rest of the chemo cycles, and also reduced dose. IT was day and night difference for me. I have no idea if these are options for your type of cancer but ask your oncology team and make sure they know exactly how your body is responding; chemo should be hard to kill cancer but we don't want it to kill us too 😅. If you don't complain about side effects they assume all is good and do not work with you on side effects so make sure to tell them everything. Blood work should be regular and any serious out of range values are usually addressed whether it is by delaying the next chemo session a bit to give your body time to recover or by giving treatments for whatever is out of range. I hope your oncologist is lung specialist not a generalist, if not, maybe find one. Also, adding a pain and symptom management doctor is key (in US they may be called palliative care). Hang in there. Chemo is horrible but it passes. You got this!

I agree with Tom, it could be many things. Was the CT with contrast? They ought to have seen large tumors with a CT. I second neck area coverage, I insisted my CT cover the neck (was for brain) and this is how they caught my lung cancer (incidental). PET is gold standard for diagnosis. Extensive blood work is needed to check infections or co-infections even if it was cancer. If your dad deteriorates, seek immediate help and push for earlier scan. 2 weeks is not horrible, but not nice to wait for sure. Best wishes!

Interesting, I had this for a while, even before my diagnosis when I felt chest pressure and repeated need to burp. Not sure if it has anything with lung cancer or is just a nervous system symptom. I notice I don't do that when I am busy with people, and I improve for me with Ativan, it is an easy drug and you can ask your doctor if suitable. However, I did many checkups, and also check O2, ECG and heart rate often (I found the nifty Apple Watch so awesome for that) to see if there is any vitals changes that cause such symptoms (no, so far). I think you are doing the right thing telling your doctors and getting checked up. If they find nothing, it could be just like my case. I love Ativan but use it very sparingly as it is easy to get used to it and it loses effectiveness. I reserve it for bad days, like today, when I woke up off from the get go and was just mopey and so tired (it made me sing along music within an hour :). Hope yours resolve soon!

I still get bouts of heaviness in my chest/needing a breath sensations from time to time and it has been over a year since my lobectomy. I think it is connected to stress in my case as I find it resolves when I relax (or take Ativan), and also co-occurs with having to burp many times in sequence (no relation to eating etc), which signals to me that I have been swallowing air (anxiety symptom). It feels not good but passes. I would check with your doctor though to confirm that nothing more sinister is causing it.

Sorry about your husband's diagnosis. I don't know much about progression except that people advise to have a new biopsy to check if/what new mutations developed. Tagrisso should control the original mutation but chances are a new mutation developed. There are a number of clinical trials combining Tagrisso with other drugs, some probably include other mutation drugs combo. I would ask your husband's doctors about all that and maybe also try posting Qs on the EGFR Resistors group on Facebook, many there dealt with progression. A second opinion is important too at this stage. BTW, can't they zap the brain mets with gamma knife or the like? Is he a candidate for immuotherapy (some PDL1)?

Hi, I am sorry your mom has LC, but try to think that she is "lucky" (if one can ever use such a word with Cancer!) that her mutation is targetable. Tagrisso is for the most part a great drug that works well and has a decent side effects profile. I have the same mutation and take Tagrisso as an adjuvant following surgery. I was not stage 4 but we have a number of forum members thriving despite a stage 4 including mets diagnosis, I am sure some of them will reach out to you. I totally get the 'feeling robbed' sentiment. I have a grade 1 kid and when first diagnosed I was full of grief and fury, particularly that radiology missed the chance to catch my tumour 4 whole years prior on a clear scan that showed it. It does not help that everyone around us is just living the good life at my age, so the feeling sorry for myself was crushing. Time heals that fury, I am still sometimes very sad and occasionally still angry about all this LC mayhem but accepted that life if inherently unfair and I try to focus on the good things only. I was 49 when diagnosed but see much younger patients here in their 30s or even 20s. Life just sucks sometimes and one has to deal with the bad luck. That 'someone can always have it worse' perspective helps to get on a handle on your own tragedies and appreciate what you have, even if very imperfect. Even stage 4 LC is not a death sentence anymore with great new medications and so many treatments being rolled out quickly. Stay optimistic but ensure your mom is getting top care, including asking about plans B and C in case Tagrisso does not work as expected. Be prepared but stay positive, Tagrisso can work wonderfully in many people. Wishing your mom the best of outcomes! I am sure being a grandma will give her so much will to live and get better.

Just a small comment that MRI uses non ionizing radiation, just radio waves, and is safe though the contrast they use is not something that is probably good to have often (gadolinium based). MRI is not good for lung surveillance sadly but excellent for brain and abdomen. PET has both radioactive material (glucose) and ionizing radiation (because they usually do PET-CT combo) so typically used sparingly or if people have contrast allergies. I don’t think PET is commonly used for surveillance as it tends to be lower resolution too.

I actually understood that regular brain MRI is called for even for lower stages. I was stage 3 and had surgery first, then adjuvant chemo and now adjuvant Tagrisso and even with treatments being adjuvant I was told once a year brain MRI (Dana Farber info session). CT is good for torso surveillance but brain is best checked with MRI. Seems CT is sufficient for bone surveillance as I see comments on bone status in my reports and no one mentioned another form of imaging may be needed. Are yo able to get second opinion?

Such updates make me smile ear to ear. Congrats and here is to many more years of thriving!

When it rains, it pours doesn't it! Hope kitty is better soon.