Judy M2

Hi Doug, I am also Stage IIIB, diagnosed in October 2019 at age 66. First, congratulations on having such great results from your earlier treatments. I also had chemo and radiation and then started a targeted therapy in March 2020. You may know that since 2008 and even 2017 great strides have been made in lung cancer treatments. We now have targeted therapy and immunotherapy as treatment options. A liquid (blood) biopsy might be able to detect the applicable biomarker. Of course, tissue biopsy remains the gold standard. In any event, biomarker testing is essential today. You're in a good city for expertise, but don't hesitate to get a second opinion. That's very common in cases of possible recurrence or change of treatment plan.

I hope you're not reading statistics from Dr. Google, they are really out of date. And as my oncologist says, we are individuals and not statistics. I'm sorry I can't answer your questions about survival rates, I don't pay much attention to them for myself. But I do know of people on targeted therapy who are several years out (8-12 years) from their diagnosis. Once your father gets his biomarker test results back, his oncologist should be able to explain the treatment plan and what the side effects might be. You'll meet people in this forum who have had recurrences and had different types of treatments. Many of us have hope that our disease can be managed as a chronic condition like diabetes for as long as possible.

Hi Salem, I was diagnosed at Stage IIIB adenocarcinoma in October 2019 when I was 66. I had a 6 cm tumor in my lower left lung with spread to lymph nodes. I was not a candidate for surgery. I had chemo and chest radiation and then started a targeted therapy for my particular gene mutation in March 2020. I slowly improved over the next year and became NED (No Evidence of Disease) last April. The results of your father's biomarker testing will determine his treatment plan. Unfortunately, that testing takes time but is vital. Everyone is different, and it's impossible to say how your father may respond to his particular treatment(s), what side effects he might have or how long he can avoid progression. The question of time is one we all have to live with and that many people worry about. I'm NED today but I don't know how long that will last. I also don't know if I'll be hit by a bus tomorrow. I am able to live one day at a time. I can say that there are many people with Stage IV lung cancer who are alive and thriving today when just a few years ago, there would have been no hope. We are fortunate to have treatment options that can provide a good quality of life.

Hi Lily, as Michelle says, the biomarker testing is important. She has mentioned some great institutions for particular mutations. I'd also like to add that immunotherapy isn't necessarily a correct treatment path for everyone, because some mutations (like EGFR) don't respond to immunotherapy. The biomarker testing can take a few weeks, so right now it's a key missing piece of your diagnostic puzzle.

Cornelia, everyone has already given you great advice, so I'll just share my lung cancer experience. I was diagnosed in October 2019 with Stage IIIB adenocarcinoma at the age of 66. I had a 6 cm tumor in my lower left lung with spread to lymph nodes, so I wasn't a candidate for surgery. The diagnosis was a shock to me too. I've had chemo and radiation and, since biomarker testing revealed an EGFR driver mutation, I've been on a targeted therapy since March 2020. I've had No Evidence of Disease (NED) for a year now. It was a long and difficult road for me to get to NED but everything has been worth it. The folks here know how you feel and are an invaluable source of information and inspiration. Hang in there, we've got your back.

I'm sorry your wife is going through this. It's unfortunate that she was misdiagnosed but it's pretty common for many of us. I was misdiagnosed for months. It's good that her pleural fluid has been sent for biomarker testing. If she does have a targetable mutation, it's very possible that her cough and fluid could respond. In the meantime, I assume that fluid will be drained off as necessary. Perhaps your wife's doctor could prescribe an inhaler to help with the coughing and shortness of breath. Please be sure to ask.

Although I have the type of mutation-driven adenocarcinoma that is typical in non-smokers, my lung cancer is presumed to have been caused by post-9/11 toxic exposure. When I was first diagnosed at Stage IIIB (inoperable) in October 2019, I beat myself up about going back to work in Lower Manhattan in that environment. But as time went by and as I accepted my disease, I forgave myself for that decision. Things happen to us in life and it does no good to have regrets. As soon as I was diagnosed, I told everyone. I didn't have any knowledge about this disease and certainly didn't know about this forum. I basically was on my own during and after treatment (chemo and radiation and then targeted therapy). I went through some really tough times and only then found this site. We all know what you're going through. Knowledge is power in our case. You can learn a lot from this site and sites like GO2 Foundation, American Cancer Society and the American Lung Association. Lean on those resources. Lung cancer treatments have advanced in the last few years and Google isn't going to reflect that. I'm sure your family thinks of a lung cancer diagnosis as a death sentence, but that's not the case anymore. I live a pretty normal life and you can too. You may find the link below helpful for talking with your loved ones. Once you get your PET scan results things should start moving quickly. Let us know what your next steps are. https://www.cancer.org/treatment/understanding-your-diagnosis/telling-others-about-your-cancer.html

Kelvin, biomarker testing should be standard but often it isn't. Just ensure that her doctor will include biomarker testing as part of the biopsy process. A lot has changed in the last few years and we now have targeted therapies and immunotherapies to treat different biomarker-driven lung cancers. Check out this link: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing

Hi Kelvin, I was also diagnosed at Stage IIIB in October 2019, when I was 66. When my primary care physician delivered the news that I had lung cancer, she told me it's not a death sentence anymore. Of course I didn't believe her at the time. I had 6x chemo and 30x radiation that ended in January 2020. Because biomarker testing showed that I had an EGFR mutation (Exon 19 deletion) that was causing my cancer, my oncologist started me on the targeted therapy Tagrisso in March 2020. In April 2021 I had No Evidence of Disease (NED) and am healthy and doing well today. It will be very important for your mother to get biomarker testing (either by tissue or liquid biopsy) so her oncologist can determine her treatment path. It can take several weeks and the waiting can be difficult, so try to hang in there.

Congrats, Justin! I agree that you should stay away from Dr. Google. It will just make you crazy. You are an individual, not a statistic. Once you continue to see improvement from treatment you'll become more confident. Everything I've heard about gamma knife is that it's precise and effective. I had fractional radiation and that worked too. Good luck!

Great news, Lizzy! So glad radiation was effective.

I so agree with Lou and @catlady91. I'm concerned that the oncologist who gave you a poor prognosis doesn't have enough up-to-date experience. If he doesn't know, it does not help you to hear what the worst outcome could be. I've never been given a prognosis, even though I asked at the beginning. Take things one day at a time, one treatment day at a time. I hope you can get a more trustworthy oncologist.

Justin, in our Tagrisso Facebook group many people have brain mets that are treated with radiation. Your radiation oncologist can tell you what type they'd suggest. I agree that lots of online information is outdated. Fingers crossed for you.

Jaime, greetings from San Diego. I have inoperable Stage IIIB adenocarcinoma with an EGFR gene mutation. Two years ago I had the exact same chemo and radiation treatments as you. Immediately afterward, I started on a targeted therapy. Because of my gene mutation, immunotherapy isn't considered to be effective. While our treatment plans now differ, I believe that chemo and radiation did the job of killing the cancer, and the targeted therapy is maintenance. It took me more than a year to finally get to NED (No Evidence of Disease) in April 2021. I think you can get good results from Imfinzi.

Tom's answer is excellent. I'd like to share a personal end-of-life story if you don't mind. My sister-in-law was diagnosed with Stage IV pancreatic cancer with a dire prognosis. We engaged hospice care for her and my husband acted as her caregiver. She was given morphine to control her pain for a few weeks until one day she just slipped into a coma. She never regained consciousness. We were relieved that she had a peaceful end to her suffering. Surround both your parents with warm family moments. You will have done your best and that's all we can do for our loved ones. Best wishes to all of you.

Nur, I understand the cultural differences, but if I were in your mother's situation and competent to make decisions, I would want to be the decision maker, not my loved ones. I had responsibility for my father's end-of-life medical decisions, and that responsibility was overwhelming, even though I had his wishes in a written document (advance directive). Best wishes to you and your family during this difficult time.

Hi Jason, you're starting off with a lot of uncertainty and that's really hard to cope with. But as Tom notes, your nodules are very small, and he's given you lots of useful information. I also agree that this is a good time to find a medical oncologist. My own experience with nodules is just surveillance. After chemo, radiation and targeted therapy for my Stage IIIB adenocarcinoma, I still have a 5/6 mm nodule in my upper right lung that hasn't changed in over 2 years and it's too small for PET characterization (which means they can't see SUV uptake). My oncologist has been watching it, but after all this time and treatment it hasn't changed. It's very common to worry between scans, and especially when you don't know what you're dealing with. Try to take things one step at a time and don't get ahead of yourself. If you do get a diagnosis of lung cancer, there are a lot of treatment options these days that can make you a survivor. Hang in there and we are here for you.

Hi Oceanna, you might find the monthly KRAS virtual meetups helpful. The next one is February 16. Here's a link to the calendar: https://www.lungevity.org/calendar

Justin, my tumor and lymph nodes continued to shrink for more than a year after chemo and radiation ended, and with the additional help of targeted therapy, everything disappeared and I was NED a full 15 months after chemo and radiation ended. It takes time for treatments to work. And remember, stable is good too.

Justin, I just responded to your mom's comment. You've had great news after a difficult time, so it may take you some time to adjust. I think you'll feel more confident when scan after scan is stable. To this day when I go for my daily walk, I reflect on how far I've come after treatment and take a moment to enjoy how good I feel now and that I have my health back. Take one day at a time, and I hope you continue to get good results.

Rikke, I know your question wasn't directed to me me but my esophagitis started about 2 weeks into a 30x radiation schedule. So did the fatigue.

Happy New, Year to you too and I hope things keep going in the right direction! There are inevitably bumps in the road during treatments but it sounds like your care is being managed well. When I was having treatment and recovering from it, I absolutely could not give any attention to things I didn't consider important or helpful. I couldn't clutter up my mind with nonsense. "Serenity now!" (from Seinfeld, lol). Thanks for your update. I hope you get good results from your treatments. Enjoy your studies!

This podcast about immunotherapy may be helpful too: https://www.cancer.net/blog/2021-11/what-people-with-cancer-should-know-about-immune-checkpoint-inhibitor-side-effects

Here is some info on KRAS lung cancer. A targeted therapy has recently been approved for the mutation KRAS G12C. https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/symptoms-diagnosis/biomarker-testing/kras You'll also want to check out the KRAS forum under the NSCLC Group/Lung Cancer Mutations. https://forums.lungevity.org/forum/60-kras/

Two years ago at this time I was undergoing treatment too. It sounds like any side effects you're having are being controlled, so that's a positive. You can expect chemo to mess with your bloodwork for a while. For mouth sores, MuGard is fantastic but awfully expensive. My wonderful chemo nurse simply gave me a bottle! Take things easy and I hope you get through your treatments without any other problems. Happy Holidays to you and yours.