The early days of diagnosis are so difficult. Sorry that your family had that experience with the oncologist.
There are so many types of lung cancer, many treatment options, and just as many differences in outcomes.
I would make sure that her team is having a biomarker test run. The result can help to drive treatment plans. None of us come with an expiration date stamped on our foreheads!, take care, hugs, Lisa
And try to have her reach out for support. Many cancer centers have social workers and palliative care staff that can help with processing the emotions and psychological side. They’ll help understand what to expect.
Good Day All! I am rather new in my journey. Diagnosed with Stage 4 adenocarcinona nsclc Aug 3rd. T1,n1, m1 to pleura. My Onc started me on Alitalia, Carboplatin and Keytruda. I had my 2nd infusion yesterday. So far I have had little side affects other than weakness for the first few days after treatment and some constipaion which I handled with a chug of Miralax. I got some good news yesterday if there is any in this diagnosis. I got genomic testing results back and have the EGFR mutation. I’m going to finish two more infusions of the above chemo combination, get a chest ct scan to document progress and go from chemo to a targeted therapy pill which he stated earlier would be Tagresso if the EGFR came back positive. Although it means I will go on a different rollercoaster ride of not knowing what lies ahead, I consider this good news. Time is time and I’m grateful for it. My Onc told me the most common side effects are diarrhea and dry skin/rashes. The chemo has benefited me on a therapeutic level with the pleura involved I’ve so far had 4 thoracentis procedures to relieve the fluid build up. He feels the chemo will dry that up in the next few weeks it will reduce and stop. My actual tumor is rather small at .43 of an inch. It’s the darn pleura that’s got me. 😉
Glad you are doing well on the chemo. I have stage 4 EGFR with mutations since 2017 and am on Tagresso with minimum side effects. So it's a good drug. And hardly any side effects-rash only in the beginning but then settles down.Wish you good health
My sister was recently diagnosed with Stage 4 Lung Cancer. Doing chemo & radiation. Dr. blatantly told her today she had 1 year to live as if he was treating a cold! I refuse to believe that. She is fighting for her life! What kind of Dr. says such things with no compassion and this newest diagnosis????!!! We're not taking this sitting down! Any direction, comments or guidance are welcome...please!
Hello @mblnyc and welcome to Mayo Clinic Connect. First, I am sorry to hear of your sister's diagnosis. It is unfortunate to feel like the doctor did not deliver such news with more care. I think in some instances, being direct is looked at as being important but in the same breath, care and concern must follow. It doesn't sound like that was your sister's experience, unfortunately.
I'd like to bring in members @lls8000 and @jannad who have been recent contributors to this discussion to see if they can start to provide you with some support based on their respective experiences.
At this time, what is the course of treatment your sister is on and how is she doing?
My sister was recently diagnosed with Stage 4 Lung Cancer. Doing chemo & radiation. Dr. blatantly told her today she had 1 year to live as if he was treating a cold! I refuse to believe that. She is fighting for her life! What kind of Dr. says such things with no compassion and this newest diagnosis????!!! We're not taking this sitting down! Any direction, comments or guidance are welcome...please!
My doctor was very kind but told me I had metastatic lung cancer. That hit me like a ton of bricks as a never smoker anyway. I’m sorry this is such a difficult diagnosis. None of us really know how long we have to live because there are new targeted treatments out there to prolong life. It is essential to get genomic testing done to see if your sister can qualify for this. I had an ER doctor ask me what I did to get this disease. I replied, “well I never smoked, I never lived with anyone who did and I never worked in a coal mine so I really don’t know but I got it anyway.” People can be cruel and insensitive sometimes.
My doctor was very kind but told me I had metastatic lung cancer. That hit me like a ton of bricks as a never smoker anyway. I’m sorry this is such a difficult diagnosis. None of us really know how long we have to live because there are new targeted treatments out there to prolong life. It is essential to get genomic testing done to see if your sister can qualify for this. I had an ER doctor ask me what I did to get this disease. I replied, “well I never smoked, I never lived with anyone who did and I never worked in a coal mine so I really don’t know but I got it anyway.” People can be cruel and insensitive sometimes.
My doctor told me that most people with my disease only live two years...I don't recall asking him how long I have because nobody can answer that. Totally took the wind out of my sales though, as I was newly diagnosed. Never give up, possibilities exist!
My doctor told me that most people with my disease only live two years...I don't recall asking him how long I have because nobody can answer that. Totally took the wind out of my sales though, as I was newly diagnosed. Never give up, possibilities exist!
2@rubysue- First, let me welcome you to Mayo Clinic Connect. You have joined the right group for sure. All of us know what it feels like to be told that we have cancer, and it is a shock for sure.
When I first asked my surgeon how long I had he told me that "no one can answer that", as you stated. I had such confidence in being honest he has treated and advised me for the 24 years that I have had lung cancer and has become a close friend.
I will take the brave step here and recommend that you look for another doctor. And the reason that I recommend this is because if he were shallow, insensitive, and unsympathetic enough to tell you how long you will live I wonder how careful his recommendations for treatment will be. No one should ever have had a doctor tell them this, especially a newly diagnosed patient. I am so sorry that you had to listen to this.
What treatment have you begun and when were you diagnosed?
Totally agree rubysue. When I asked about my length on earth she said God’s in control not me.but will treat you with best options for you! . That was 2 and half year ago. First Dr said 6 months to two years. Here I am yet and doing pretty good.
Biomarker testing is a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) that can provide information about cancer. Each person's cancer has a unique pattern of biomarkers. Some biomarkers affect how certain cancer treatments work.
The biomarkers you are tested for will depend on the stage of your non-small cell lung cancer (NSCLC). Some common biomarkers you may hear about are ALK, BRAF, EGFR, HER2, KRAS, MET exon 14 skipping, NTRK, RET, and ROS1, or proteins such as PD-L1.1
I don't have a science background so I can't explain this any more than what I have described. Each person's genetic makeup is different and so will your cancer be. Even if you have the biomarker and the same type of lung cancer you might be treated in a different way because your biomarker will be different. So it's important to be tested and give yourself the best chances you can for survival and wellness.
My cancer is unusual and so far my treatments haven't called for using my Braf marker and TP53. But at least it's in my record in case it's needed in the future. I still don't know how they have affected my cancer or what could be used in the future.
Does anyone else know what their marker (s) is and how it affects their cancer and treatment?
Biomarker testing is a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) that can provide information about cancer. Each person's cancer has a unique pattern of biomarkers. Some biomarkers affect how certain cancer treatments work.
The biomarkers you are tested for will depend on the stage of your non-small cell lung cancer (NSCLC). Some common biomarkers you may hear about are ALK, BRAF, EGFR, HER2, KRAS, MET exon 14 skipping, NTRK, RET, and ROS1, or proteins such as PD-L1.1
I don't have a science background so I can't explain this any more than what I have described. Each person's genetic makeup is different and so will your cancer be. Even if you have the biomarker and the same type of lung cancer you might be treated in a different way because your biomarker will be different. So it's important to be tested and give yourself the best chances you can for survival and wellness.
My cancer is unusual and so far my treatments haven't called for using my Braf marker and TP53. But at least it's in my record in case it's needed in the future. I still don't know how they have affected my cancer or what could be used in the future.
Does anyone else know what their marker (s) is and how it affects their cancer and treatment?
(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends." On so many variables that are still being discovered. I have a FOXA1 and a.familial POT that are not understood in lung cancer. For a while there I felt like an orphan: everybody else has a targeted gene; why not me?
The reality is that yes, we know more...but there's much more in the undiscovered country of our genomes. DNA may make us more vulnerable but you have to take your personal history into account, like your job or your food or where you're living. And...AND...your DNA may be perfect but you are still at risk. So I always return to the "get as healthy as you can for as long as you can." Talk to your nutritionist if your program has one. Cheers & good luck, Wendy
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And try to have her reach out for support. Many cancer centers have social workers and palliative care staff that can help with processing the emotions and psychological side. They’ll help understand what to expect.
Glad you are doing well on the chemo. I have stage 4 EGFR with mutations since 2017 and am on Tagresso with minimum side effects. So it's a good drug. And hardly any side effects-rash only in the beginning but then settles down.Wish you good health
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1 ReactionHello @mblnyc and welcome to Mayo Clinic Connect. First, I am sorry to hear of your sister's diagnosis. It is unfortunate to feel like the doctor did not deliver such news with more care. I think in some instances, being direct is looked at as being important but in the same breath, care and concern must follow. It doesn't sound like that was your sister's experience, unfortunately.
I'd like to bring in members @lls8000 and @jannad who have been recent contributors to this discussion to see if they can start to provide you with some support based on their respective experiences.
At this time, what is the course of treatment your sister is on and how is she doing?
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Helpful -
Hug
1 ReactionMy doctor was very kind but told me I had metastatic lung cancer. That hit me like a ton of bricks as a never smoker anyway. I’m sorry this is such a difficult diagnosis. None of us really know how long we have to live because there are new targeted treatments out there to prolong life. It is essential to get genomic testing done to see if your sister can qualify for this. I had an ER doctor ask me what I did to get this disease. I replied, “well I never smoked, I never lived with anyone who did and I never worked in a coal mine so I really don’t know but I got it anyway.” People can be cruel and insensitive sometimes.
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3 ReactionsMy doctor told me that most people with my disease only live two years...I don't recall asking him how long I have because nobody can answer that. Totally took the wind out of my sales though, as I was newly diagnosed. Never give up, possibilities exist!
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1 ReactionYes they do, be sure you get genomic testing done as it can make a big difference not in diagnosis but in treatment options which can prolong life.
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1 Reaction2@rubysue- First, let me welcome you to Mayo Clinic Connect. You have joined the right group for sure. All of us know what it feels like to be told that we have cancer, and it is a shock for sure.
When I first asked my surgeon how long I had he told me that "no one can answer that", as you stated. I had such confidence in being honest he has treated and advised me for the 24 years that I have had lung cancer and has become a close friend.
I will take the brave step here and recommend that you look for another doctor. And the reason that I recommend this is because if he were shallow, insensitive, and unsympathetic enough to tell you how long you will live I wonder how careful his recommendations for treatment will be. No one should ever have had a doctor tell them this, especially a newly diagnosed patient. I am so sorry that you had to listen to this.
What treatment have you begun and when were you diagnosed?
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4 ReactionsTotally agree rubysue. When I asked about my length on earth she said God’s in control not me.but will treat you with best options for you! . That was 2 and half year ago. First Dr said 6 months to two years. Here I am yet and doing pretty good.
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Like -
Helpful -
Hug
1 ReactionBiomarker testing is a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) that can provide information about cancer. Each person's cancer has a unique pattern of biomarkers. Some biomarkers affect how certain cancer treatments work.
The biomarkers you are tested for will depend on the stage of your non-small cell lung cancer (NSCLC). Some common biomarkers you may hear about are ALK, BRAF, EGFR, HER2, KRAS, MET exon 14 skipping, NTRK, RET, and ROS1, or proteins such as PD-L1.1
Here is a great site to look at: https://www.lungevity.org/noonemissed
I don't have a science background so I can't explain this any more than what I have described. Each person's genetic makeup is different and so will your cancer be. Even if you have the biomarker and the same type of lung cancer you might be treated in a different way because your biomarker will be different. So it's important to be tested and give yourself the best chances you can for survival and wellness.
My cancer is unusual and so far my treatments haven't called for using my Braf marker and TP53. But at least it's in my record in case it's needed in the future. I still don't know how they have affected my cancer or what could be used in the future.
Does anyone else know what their marker (s) is and how it affects their cancer and treatment?
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Like -
Helpful -
Hug
1 Reaction(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends." On so many variables that are still being discovered. I have a FOXA1 and a.familial POT that are not understood in lung cancer. For a while there I felt like an orphan: everybody else has a targeted gene; why not me?
The reality is that yes, we know more...but there's much more in the undiscovered country of our genomes. DNA may make us more vulnerable but you have to take your personal history into account, like your job or your food or where you're living. And...AND...your DNA may be perfect but you are still at risk. So I always return to the "get as healthy as you can for as long as you can." Talk to your nutritionist if your program has one. Cheers & good luck, Wendy
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Helpful -
Hug
1 Reaction