LilyMir

Oh no @Karen_L, so COVID found your household after all? So sorry to hear and hope your husband recovers very soon.

As others wrote already, doctors are horrible at diagnosing lung cancer for younger patients, particularly non-smokers. My concerns and even symptoms were dismissed for years, told I have anxiety even as I sought the opinion of multiple GPs, OBGyn, Neurologist, Gastroenterologist over that period. Heck even a 1.5 cm tumour incidentally captured on a neck scan was completely ignored by radiology and robbed me from the chance of a stage 1 diagnosis (I was diagnosed 4 years later at stage 3b!). If symptoms persist, I would push relentlessly for more investigations. The worst would be they catch anything sinister so early when chances of cure are near 100%. The best they find nothing serious and your daughter gets a proper diagnosis for her symptoms. Good luck!

Hi, Someone here was staged 1B as I recall and was given an "option" to take Tagrisso (but not chemo) if they wanted, maybe they can comment. I think they were told risk of recurrence is 30%. The ADAURA trial showed advantage for Tagrisso as adjuvant in stages 1B to 3A (stage definitions changed during trial mind you). Earlier stages obviously receive less benefit since most of them are cured by surgery alone but recurrence risk remains. Adaura2 is ongoing I think and is looking at value of Tagrisso for stage 1A. I guess this is one of those risk vs benefit situations. Tagrisso has risk. Not giving adjuvant therapy has risk. Doctors seem to have different preferences for risk. Maybe a second opinion is warranted? Good luck!

Hope the CT went well @BridgetO!

I got a nasty dry cough about 2 weeks after my lobectomy. It was worst when I spoke, which was so annoying. It took many weeks for it to improve. I occasionally cough now but not sure it is the same reasons but certainly nothing like previous cough intensity. Hang in there, it gets better (but check with your doctor if it feels bad or does not improve; I had 2 X-rays to check on chest), and congrats your cancer was caught so early!

Hip hip hurray for Kamoto, congrats!!! Yay team Tagrisso!

Haha, I don't recall being asked to watch what I ate before my PET scan, only to fast for 6 hours, but I guess that is makes for more accurate imaging. I was told not to exercise the previous 24 hours and I had no problem whatsoever with that!

Sorry you have to fast Kamoto but fingers crossed your tumours will be much smaller if not gone tomorrow. Best wishes!

We are all interconnected indeed, I think when Vancouver had horrendous air a year or two ago, the fires were in Portland. This time we have fires to the south on the border and fires inland so feels like we are trapped and with a weather inversion, it is an ugly air week. I agree it is important to check before heading out. I was stunned my boy yesterday was give PE class outside at school despite the very bad particulate levels in the air. Good thing he keeps an N95 on him at all times. Every day this week when I open the patio door to get some oxygen into our home the air quality monitors we have turn on warning lights within a minute or two and it smells bad. Our CO2 must be terrible inside (hard to choose what poison, CO2 or PM2.5)...

Hi Joana, though I am new here, I have asked a lot of doctors I know through my work re. best followup imaging modality. Seems the consensus is that contrast CT is standard for lung cancer monitoring. I asked about PET and it does not seem anyone I know gets those unless a CT flags something (or the patients has allergy for CT contrast). They claim that CT is more sensitive (detects smaller nodules) and PET can flag areas that are normal causing false positives. I personally think the two are complementary based on my experience where CT detected my tumour but missed a positive lymph node that was also avid on PET. Mind you, both scan types give you a good dose of radiation. If your insurance does not cover a scan, probably paying for a CT our of pocket is relatively more affordable and a good way to exclude/detect lung cancer. Do you have urgent care clinics that are not ER but offer fast service? Do you have a GP who is more accessible? Hope you get an answer soon. Best of luck!

Great results from ADAURA Phase III trial (Tagrisso for adjuvant use following full resection with negative margins). Mainly: ~3 in 4 patients treated with adjuvant Tagrisso were alive and disease-free at 4 years. Tagrisso also reduced the risk of disease recurrence in the brain or spinal cord by 76% in patients with Stage II-IIIA disease. "Tagrisso demonstrated 5.5-year median disease-free survival in the adjuvant treatment of patients with EGFR-mutated lung cancer": https://www.astrazeneca.com/media-centre/press-releases/2022/tagrisso-demonstrated-5-year-median-disease-free-survival-in-the-adjuvant-treatment-of-patients-with-egfr-mutated-lung-cancer.html#! Other reports on same: https://www.yalecancercenter.org/news-article/adaura-trial-results-provide-new-hope-for-patients-with-early-stage-non-small-cell-lung-cancer/ https://www.onclive.com/view/updated-adaura-data-reinforce-adjuvant-osimertinib-as-soc-for-egfr-mutated-stage-ib-iiia-nsclc Hurrah!

A timely study related to this: Locking Down a Link Between Pollution and EGFR-Mutated Lung NSCLC: https://www.medpagetoday.com/meetingcoverage/esmo/100641 (also KRAS). Seems I jinxed it mentioning last year's bad air in Vancouver; we woke up to the worst air in any city today again. Hazardous particulate matter with 20 times what is considered safe. Smells and looks like we live under Vesuvius!

Absolutely Judy, and do not forget that air pollution is sometimes worse inside our homes due to activities like cooking. We bought some IKEA air quality sensors and I am stunned how quickly (and often) they turn red when I cook! Living in BC also means almost annual disastrous forest fire season with climate changing so fast (Vancouver had the worse quality of air of any city on earth last Summer for some good chunk of time). We now have a couple of HEPA filters at home and they help.

Hi Rosie, sorry you have to join our group but a warm welcome to you. I am sure you will find this forum extremely helpful and full of great people. I too was stunned with a lung cancer diagnosis this year as I had no risk factors. I also have a 6 year old and worry about him every single moment. The shock will slowly decrease and you will soon start focusing on your treatment and healing. Take it one step at a time, this is how I manage my fears and worries but it is very hard, I know. Please ask for biomarker testing if they have not done that for your already. Did they do a biopsy and molecular tests on that? I have the EGFR exon 19 mutation, which is targetable with a very new drug. Wishing you all the best, stay hopeful!

So sorry Justin that you have to worry about this still. I know what you mean about doctors "not being concerned", I always get that from my oncologist so I often seek second opinions. Good idea to push for a head scan again soon. Hope all turns out to be just perfect! Keep us posted.

Hi Bob, I developed a persistent cough about a couple of weeks after my lobectomy surgery. It lasted many weeks but finally subsided. I cough on rare occasions now and it is minor. As to SOB, I do get that when I exert myself like when on a brisk walk, climbing stairs but not when resting. Given my heart rate went up after surgery and chemo, they also had me do a chest CT to rule out pulmonary embolism. Try to stay vigilant and pro-active as this disease is very sneaky and all treatments come with some form of risk. If reassured by your care team, enjoy life and your good luck of catching the disease so early! Take care.

Hi Justin, what is the plan for you from your oncology team side? I was told one should not stay on Dexa longer than needed as it has side effects. I hope you are getting some answers about the longer term plan (if not, maybe a second opinion is in order?). I recall your GP was pro-active so hope you are having him as part of your care team still. I am having my own fears about starting targeted therapy, supposed to start in less than 2 weeks. I hear all sorts of horror stories but also know that the drug helped so many people who had no or minor side effects. I think my chemo experience and subsequent issues like tachycardia and SOB etc freaked me out but I have no option but to push through at this point to reduce my recurrence risk as much as possible. As the doctor gave me the leaflet for the drug the other day, he smiled saying "if you read it all you would not want to take it but I give it to even 80 year olds and most of the time it goes well". Risk remains but I guess this is our life now as lung cancer survivors (sigh).

Hi Susan, welcome to this awesome community. I am new here, was diagnosed in March 2022 and was staged 3b since one of my mediastinal lymph nodes was positive and my tumour was quite big like a thin 5 cm long tube. I have EGFR exon 19 mutation. After UL lobectomy with negative margins, I was on 4 rounds of platinum doublet adjuvant chemo which I just finished in mid August. I was told I should start adjuvant Tagrisso soon and expect to by Sep 20th for 3 years. How was your experience with adjuvant Tagrisso so far? Take care!

Sorry you have to be here Lisa, but welcome to this awesome forum. I remember using some online calculators for risk of nodules when mine was found (used it just to get a sense of what I should expect before biopsy was done). Here are a few: https://www.sts.org/resources/lung-nodule-resources/lung-nodule-risk-calculators I think I used the first one in the list and it was very evident to me that my biopsy will turn out to be cancer. These are just models but they seem to be useful/informatives (but still, as estimates). Wishing the best of luck to your husband!

Yes Laurel, so many international cancer centres offer remote second opinion. I live in Canada and we have a free universal coverage so a second opinion does not really exist (different doctors but same system and same protocols and one cancer centre in my city). I got a second opinion from Europe as well as informal confirmations from colleagues since I am myself a scientist and have contacts with doctors. If I were in the US, I would seek treatment or at least second opinion from one of the top cancer centres there. I checked and almost all offered remote consultations for a few thousand dollars. I totally get the anxiety while waiting for answers. My pathology report took weeks, then the biomarker results additional weeks. The results are important though so push for speedier testing so you can start on the right treatment ASAP. Best of luck!

I still do not understand why your mom is getting immunotherapy with her EGFR mutation. I was told by many doctors that these are incompatible. I understood Osimertinib should be used (Tagrisso) with EGFR patients. Did you ever get an answer about this? Did you get a second opinion?

I got a remote second opinion. It was the same treatment plan. Yes, seems treatments are standardized everywhere but maybe there are variations in staging and addressing adverse events? Second opinions are good to have, especially if easy to obtain, I think.

I second Tom's advice Laurel. Chemo nurses 'inattentive and on their phones' is a horrendous malpractice. They should be continuously checking on patients, especially first timers and at the start of each infusion (random allergies can happen too). I have had one occasion with an unbelievably unpleasant and incompetent chemo nurse (still attentive mind you, but horrendous skills and manners, she poked me twice and still could not find a vein, wanted to kick my husband out of the room because he asked questions about my treatment, she even refused to answer my question about my allergy risk)... I stopped her from being my nurse within a few minutes, called the charge nurse and charged rooms. Do not accept subpar care in cancer care, it has to be safe and competent, as well as humane.

Hi Laurel, I understand the anxiety and worry all too well. I was diagnosed stage 3b this Spring. Had major surgery with a lung lobe resection along with a bunch of lymph nodes . Despite negative margins, one node was positive and I had to undergo Chemo to reduce recurrence risk (which is otherwise very high). Chemo can be very differently experienced by different people, depending on the person, medication and dose. One of my friends had Cisplatin weekly and never had an issue. I had one infusion of Cisplatin and had the worst possible side effects. The key is to advocate for yourself: Make sure you have a good medical team you can trust. Tell your oncologist right away if/when trouble happens. Make sure you have a pain and symptoms specialist on your care team. I did not at first and had to myself push to get them on board. They are great and in my case were much more humane than my oncologist who was so detached and acted more like a robotic chemist. Ensure you hydrate so well. I even had extra IV hydration with infusions given the trouble I had with the first cycle (was suggested by my pain and symptom management Dr!). Take the medications needed to reduce effects rather than toughen things out. I have a slew of medications next to my bed. Ask away if you need specific info on drugs/experiences. This forum has people with so many experiences. For me, after a very tough cycle 1, my regimen was changed to another platinum duo (one medication replaced and both reduced in dose) and that reduced my trouble by almost an order of magnitude. Still chemo is no fun, but it can help kill invisible cancer cells so I had to bite the bullet. Like Judy, I have an EGFR mutation and will go on long term targeted therapy next. So many new treatments for lung cancer exist now so being/staying positive is certainly warranted and is not only a cliche. I have no experience with radiation but many here do and can help you with more info if needed. When I started chemo in June, I was petrified and thought my misery will never end, but last week I had my last infusion! I am still fatigued and have issues to followup with my doctors but I survived the unpleasantness of these few months and now have a better chance to beat my cancer, hopefully! I sometimes get bouts of sadness/worry/ despair but quickly rebound to HOPE. My 6 year old and my family replenish my strength when my strength and hope dwindle. Find your source of strength and support. We are all here to help too. You can do this!

Hi Misty, welcome to the forum. I was recently incidentally diagnosed at 49, though my tumour was missed for many years as it was also captured incidentally in 2018. I hope you get the best possible news from your surgery but if you have any questions, do not hesitate to ask. You have found the best forum for lung cancer survivors!