WalkingHorse

Thank you for all your responses. My Oncologist says I am a 3A; my Radiology Therapy Dr says 2B...I think the problem lies with the mediastinal lymph node and where it is located - right in the middle of the 2 lungs it seems. Anyway, I go for chemo and radiation starting June 6. Radiation 7 days a week and Chemo 1 day. Will also be seeing a surgeon June 8 to see what he has to say - I was surprised since my Pulmonary Dr said no surgery. Should be interesting to say the least...if I can have surgery, I am leaning towards that ... I don't know if that is the better choice or not. They would be doing a lobectomy of the right lower lobe.  It's hard to stop thinking about all of this and I am trying to keep a positive attitude; otherwise, I am doing everything I normally do and hope to keep that up even with the treatments. Hearing from others in this group are a big lift for me. Have a great Memorial Day weekend!!!!

Wonderful news!! 🎉🎊🤸‍♀️

CT with contrast: right lung looks better in terms of ground glass and other scarring. No sign of tumor. No new growth. 4 mm nodule on left lung is teeny and probably nothing to worry about.
MRI: Tumor that was gamma knifed is shrinking nicely, i.e. dead. There’s a tiny pinprick dot but that could be a vein or nothing. Probably nothing to worry about. 
And life goes on….
Yippee! 
 
Karen

Deep breaths, Kamoto. There's a lot coming at you right now. 
Did you have a conversation with anyone about the MRI findings? By that I mean, someone who is an oncologist and an expert in reading MRIs of brain scans. (I'm seconding Tom's recommendation of a radiation oncologist.)
Typically, consulting with myself about these matters is not productive. In the week before my scans, I always decide what my treatment would be should there be evidence of progression; that's a coping strategy designed to make me feel like I have some control in a situation. I have to be very careful with that-- I have knowledge limited only to my experience and capacity to read peer-reviewed studies. That's a lot, but it pales in comparison to professionals. I use my knowledge to try to ask good questions. 
Hang in. As the data comes in, treatment paths will be clarified.
Karen

Sorry to intrude on this thread but WoW. That just goes to show that what a difference a good doc (diagnostician) makes.  Your doc has good instincts. Same for the tumor board.

Sorry to intrude on this thread but WoW. That just goes to show that what a difference a good doc (diagnostician) makes.  Your doc has good instincts. Same for the tumor board.

Sorry to intrude on this thread but WoW. That just goes to show that what a difference a good doc (diagnostician) makes.  Your doc has good instincts. Same for the tumor board.

It's unlikely that, without treatment, you would go for 3+ years and not have worsening symptoms of lung cancer. I understand the worry, but try not to get ahead of yourself. Even after a diagnosis, it can take weeks for a treatment plan to be developed, and that waiting period can test one's patience. I really hope you get a clear report. 

Please insist on a chest Xray or CT scan to determine whether you have something to be concerned about. Without one, it's just a guessing game. 
Your persistent cough and hoarseness could be acid reflux or even allergies, both of which are easily treatable. 
I hope you'll get a scan or Xray soon. This is the first step for all of us and is the only way to diagnose lung cancer, if you have it. And of you don't have it, your mind will be put at ease. 

Hi Sabin, I welcome you to our club, the one no one wants to be in. But here you will find stories of hope & healing. My LC journey began as my 4th cancer diagnosis over 18 years. There was so much cancer on both sides of my family that my 1st diagnosis of breast cancer didn't even surprise me. I had surgery, chemo & radiation. I found the love & caring of friends, family, neighbors, nurses & Doctors to be astonishing. Twelve years later, I was also not so surprised to learn I had breast cancer in the other breast. That one only required 2 surgeries. The 3rd time it did surprise me. I had never heard of thyroid cancer & by now I was feeling like, "Go pick on somebody else.". I had surgery to remove the thyroid &  radioiodine therapy and began daily thyroid pills. Three years later I was diagnosed with lung cancer, had a CT guided biopsy, PET scan,and more.  When the right lower lobe was removed and sent to pathology, a 2nd tumor was found and diagnosed as small cell. Now I was told I would need rigorous chemo & radiation.  On the very day I was to start treatment my Oncologist told me she was doubtful of my diagnosis & took my case to the weekly tumor board at the Cancer Center. That bunch of educated, dedicated, caring Doctors determined the 2nd tumor was not SCLC but a rare neuroendocrine carcinoid. All the treatment I would need is the surgery I already had. Healed from surgery quickly, and 3 years later no evidence of disease. Hang in there. LC is not a death sentence.

First, I recommend joining the Tagrisso (osimertinib) Patients & Caregivers Group on Facebook:
https://www.facebook.com/groups/2098822473719352/?ref=share
The members have discussed all of the Tagrisso side effects, including GI. Some people find that dairy gives them problems. I have Tagrisso side effects other than GI: splitting nails, nasal allergies and itchy rash that comes and goes. All are manageable. 
You'll also find lots of folks who are Stage IV and living life. I'm Stage IIIB, diagnosed in October 2019. Had chemo and radiation first before starting Tag in March 2020. I've had No Evidence of Disease since April 2021. 
I had those dire thoughts when I was first diagnosed too. I've learned to live one day at a time, especially since no one can ever know how long their life will be. I'm grateful for every day. 

Sabin,
When I was first diagnosed with Lung Cancer (Feb 2019), I believed the end had come.  In my family, almost everybody on my mother's side (including my mother and father) died of cancer and for a few specifically LC.  When diagnosed I was living with my wife who had advanced dementia and I was a 24/7 caregiver.  Two of my three kids lived in other states and I determined that I didn't have much longer to live so I needed to plan for "the end".  I still had two months of tests before my diagnostic process would be completed, but for me I couldn't see anything but death.  
Then I came across this site and I was embraced beyond what I expected.  Others shared their stories of diagnosis, treatment and survival.  Some for months, others for years , and even others for more than a decade since diagnosis.  They answered my questions, encouraged me, and had me so prepared for my surgery and follow up treatment that I felt more ready than any other time in my life.  
My focus changed, rather than centering my thoughts about dying I began thinking about living.  Prior to my surgery, (in May 2019), I increased my workouts to better prepare my body to heal and I started thinking about what to do with my future rather than seeing nothing but an oncoming disaster.  It dawned on my that to waste the life I wanted to continue so much on worry and things outside my control would never let me enjoy whatever life I had left.  
I can tell you that even today I'm aware that this is a disease of high recurrence and "Dr Google" survival stats are terrible (also inaccurate for more reasons than I will go into here), but my choice was to live every day until I can't do it anymore.  I support a number of varied groups and contribute to the forums here on Lungevity.  I cherish my friends and family more, write music, read books, and allow life to unfold day by day.  

I can only say that with the help of folks here, support of my medical team, and a change of mindset; my life became a wonderful gift that I will enjoy each and every day.  I certainly understand your feelings and won't ever diminish them, but I am here to say that there is "life after cancer" and I hope you are able to live it fully and with joy.
Lou 

Sabin,
Do I have insight about controlling one's thoughts about life duration? I went down that path during treatment and it caused a deep depression. So I compounded my problem set. Now I just focus on living in the day. I neither morn the past nor worry about the future. I have some control about actions and activity each day and that is the extent of my focus. But, I didn't magically develop this narrow focus. I had therapeutic help. One of the benefits of this site is to learn from other's experience. My experience suggests you've got enough to worry about with treatment and side effects. Adding an uncertain and unknowable future to that load was too much for me.
What are your GI side effects? I had a similar medication called Tarceva during my 4th line therapy. My side effects were a horrible case of face, head and neck acne and diarrhea. There was nothing I could do about the former, but I reduced the GI distress by starting my day with a bowl of plain steamed rice. I also used medication but medication alone didn't help. The rice worked but ensure it is not the "converted" type and for me, it had to be the first thing I ate.  
Stay the course.
Tom

Thank you! I was so happy to see it gone. Still a bit sore from the removal. More sore coming out than going in. Didn't expect that.
My smoking days are LONG over Karen. 😆 Only edibles and oils for me. I fiercely protect my lungs these days. My son owns one of the first commercial indoor grows there in Oregon so am familiar with things in that arena. As he is in business, he does not "hook me up" so to speak here in Texas. Does everything by the books as he should but when I visit he makes a nice THC/CBD oil for me.
I was given an rx for pregabalin. It did not agree with me at all. Only took one pill and had almost every bad side effect in the books. It was horrible. Picked up my rx and ate my first gummy last night. Best night sleep in a very long time. The tingling in my hands and toes is less annoying today as well and I feel very clear headed and rested. That's a win in my book! 

Kamoto, glad your biopsy was uneventful. My suggestion for your shortness of breath is to ask your pulmonologist for an inhaler. It really helped me when I had SoB. These days, on a targeted therapy, my SoB is rare. 

So, it’s been a bit since I’ve posted. 
As the title says, I walked out before my lung surgery and I’m so glad I did! 
Too many details to type but the short story is, the place was awful in my opinion and it just wasn’t for me. I did not feel comfortable or cared for. I left. 
i spoke with my oncologist and she got me in with a new surgeon and I will now have my surgery at the same hospital that I did my chemo/rads before.  The new surgeon ordered a chest Ct and wouldn’t ya know, they found another nodule in the upper area of the same lung. So now there are two. The second one is too small to do anything with so who knows how that will go.  
Anyway. Surgery Thursday 5/26/22! 
I feel much better than I did before! 
I will post soon as I can after and let everyone know how it went.  

i do have a question! Did anyone have the pre-surgery drink? I was told I can have water up until 2 hours before surgery! I’m so happy for that! I can’t hardly stand not having my water through the night haha 

Hey 
I wanted to chime in a bit here, you sound a lot like me. I had a lung resection w/ possible lobectomy scheduled last month and I literally walked out before my surgery because the place was a mess! From filthy conditions to rude, downright incompetent nurses. It was not the place for me.  I am now scheduled with a different surgeon in the same facility that I went to for chemo/rads for a previous cancer, this Thursday 5/26/22. 
I was pretty scared and very anxious when I got this news because the nodules I have (found a second one after the first surgery didn’t happen) could be a recurrence of the other cancer or it could be a new lung cancer. Lots of unknowns.  Also- Surgery. I mean, I just don’t like it. But, I will push on because it’s probably early no matter what it is and After having first hand experience with cancer and treatments, I know it’s better to catch as early as possible. 
It’s so important to feel confident with the surgeon and staff and facility you’ll be at. This time around, I am far less anxious and feel really good about where I will be. It’s never my idea of a good time but my idea of living longer definitely outweighs my anxiety over surgery. 
I’ve read posts here and have had so much support from others who graciously share their experiences so that we newbies can find hope and comfort- it’s made all the difference. 
I wish I could say the perfect words to help you through this but it’s just scary. I will definitely post here when I’m able to after my surgery on Thursday and tell you everything that went on!  
I hope you’re having a great day and I’ll be thinking of you! 

Gautham,
I’m so glad to hear your daughter is considered cured. I, too, have a daughter who’s been cured of lymphoma. While her treatment was awful, it taught me essential lessons in how to effectively navigate the cancer medical establishment. 
It also sounds like your medical care is on track. I don’t know if you’ve had biomarker testing? 
Oh, how I relate to your comment about not accepting the diagnosis, even after being in treatment. I never smoked and regularly exercised— how on earth did I get lung cancer? Every once in a while, I’d stop in my tracks and say “I have what?” It took me quite a while to process and integrate the tsunami of information and experiences. 
I began weekly meetings with a counselor early on; I think it made a significant difference in the acceptance process. Perhaps you’d consider this?
I’m sorry you need to be here, but I’ve found this to be a solid support community. I hope you do, too.
Karen

Hi to All. This is Gautham from India (you can pronounce as Gotham as in Gotham City).
Life is like a box of chocolates; you never know what you get. These words surely ring true in my case, except that the chocolates are not nice. Having spent all my life working hard to provide for my family, I never anticipated life will give me these many hardships in the last 6 years. Six years ago, my daughter was diagnosed with a leukemia (ALL), right after I moved to India from the US/Boston. Having fought the illness with her over the last few years both mentally, emotionally, and financially, I thought good times were ahead. Seeing my daughter grow up (she is 12 now) is the most beautiful thing in my life. She is what they call here "cured".

Unfortunately, hardship has now struck twice. I have now been diagnosed with Lung Cancer (NSCLC) with PDL-1+, Stage IV adenocarcinoma. Just a routine check-up with no specific symptoms, my life turned upside down in a matter of 2 weeks. I was feeling some breathlessness while climbing 4 flight of stairs (just general discomfort). It was for 1 month and I attributed it to after effect of the Omicron Virus.
A routine X-ray showed massive fluid build up in the left lung (pleural effusion). A visit to the pulmonologist and the doc suggested thoracotomy. Fluid was drained out (about 4L) and tissue sent for biopsy. This was the last week of February 2022. The tissue sample was found to be malignant. Since then moved to a specialized Cancer center here in India and additional marker testing/PET scan revealed Stage IV. All mutations negative, except PDL-1.
Was a light smoker on and off for a few years. Always thought cancer was a old-age disease. I am only 44 and have two kids, 12 and 8 yrs old. So the diagnosis was shocking to say the least.
Since surgery was not the recommended option, I have now completed 4 rounds of chemo (Alimta and Carboplatin) and 3 rounds of immuonotherapy (Keytruda). Health wise doing fine (able to walk 3 miles each day), but mentally yet to accept the diagnosis. You always think of what happens to the family after!!!. Don't know how many infusions are required to beat this.
Looked at support groups and loved this one. Hoping to fight the disease.
 
 

Hi all, Bin a while since I’ve posted but it’s been a waiting game for Jus’s results, and what a great result it is !!!! No spread , another reduction and is marked as stable. Such a relief he’s going in the right direction and no one deserves it more than him, it’s such a tough terrible journey for you all and my heart breaks for you, but hang in there and stay strong.  Jus, I love you so very much and am exceedingly proud of you for the way you’ve coped with all this and if anyone can kick this you can. Keep up the positivity everyone and show em who’s boss. All the very best to you all and lots of love, best wishes Isla xxx

Hi everyone,
I got the results from last weeks CT scan and it's all good news thankfully, there is no spreading to anywhere else and the tumor has shrunk a bit more so classed as stable,there is scaring on the lung from the radiation but they are really pleased with everything so just the mri scan next month to see if all is good in my brain and hopefully get on with my life,
All the best
Justin 

Hi everyone,
Just an update I had a chest abdomen and pelvis ct scan done ten days ago, I rang the cancer nurse yesterday to see if I had an appointment to see the oncologist or if the results were back, I was told I would probably have appointment next Thursday or possibly the Thursday after, this does seem a bit long to wait for results as it's very worrying but I had a phone call today to tell me I have an appointment with the oncologist tomorrow just hoping for some good news I will let you know how it goes 
Many thanks Justin 

After 10 weeks of second lung surgery, my shortness of breath and chest pain continue. Infectious disease doctor said I had empyema because of bacteria infection of the lung. After 6 weeks of IV antibiotic treatment, they are still not sure if the bacteria is completely dead. But they hope the bacteria has not infected my blood because it could cause serious heart damage to my mechanical aortic heart valve that was replaced last year. The bacteria is known to be indolent meaning it is very slow growth.  So blood testing may not detect it immediately. It may take between 6 months to 12 months for it to show up in the blood test if the infection still there. If it has infected my blood, I will need to have another aortic valve replacement surgery which surgeon does not liken. I still have a lot of trouble breathing and chest pain. I mostly bedridden because when I sit up I can not get full breath. Only laying down will give me some relief. Surgeon said my condition may become permanent. But have to wait 6 to 8 months to find out.
Meanwhile, they kicked me off disability insurance. Trying to figure out how to support my family with two teenagers with no incomes. Savings have been drastically drained since diagnosed last year.
 

I am new to this disease but from all my reading, cure is not a term that many will use. People aim for NED (no evidence of disease) and long term survival/remission. I have read about cases diagnosed very early progressing badly and advanced cases  responding so well to treatment defying terrible statistics so this disease seems hard to predict.  
They told me I have stage 3b after saying stage 1 then stage 2. I had surgery and they said it was "curative". However, pathology finding a much larger tumour than what both PET and CT imaging measured makes me very weary of the limitations of imaging (let alone microscopic occult cancer). Also, despite clear margins, I had one node positive which complicates matters and is considered bad news. A number of medical professionals continue to tell me my cancer is still curable but I don't like to think that way anymore as I cannot take another shock. I hope I will have NED and will remain vigilant forever if I survive. Keep thinking positive (I struggle with that) as no one on earth can tell us, patients, what will actually happen. Each body is different, each cancer is different and each response to each medication is different. I am hoping for the best outcome and praying to be on the surviving side. 

Hi - just wanted to say I'm glad you found us. I know it's hard at this point but try to stay positive. So much has changed in lung cancer over the years and it's not the death sentence it once was. I was diagnosed with stage IV adenocarcinoma in February 2016, and I've been NED (no evidence of disease) since October 2018. Treatment was tough - not going to pull your leg on that - but I'm here to talk about it. That's what matters.
Keep us posted on your progress.