@abob, and my bad for not sharing an authoritative site: lungevity.com. There are many lung cancer statistics and much good information there.
I just returned from the World Conference on Lung Cancer, where, among other things, I learned that much work remains to be done to obtain meaningful information from blood tests. Sort of the Holy Grail of blood tests that several companies and Universities are working on is the ability to detect early-stage cancer well enough to use a blood test for pre-screening. That will enable many more people to get easily screened. We're not there yet. ctDNA is one of the first steps in that direction.
I also have a very different view on the permanency of lung cancer. Unless my doctor tells me that I currently have active cancer in my body, I am cancer-free. I've been cancer-free most of my journey. And as someone who is cancer-free, I pay it no mind. Life is way too short to walk around feeling like you have a gun to your head or certain that you know the day your life will end. I refuse to live like that.
As I've said at the end of my Lung Cancer Awareness presentations while displaying a picture of Han Solo from Star Wars: "Throughout my journey, the odds were there, the statistics, the prognosis. But I chose to be like Han. Not to live by the odds, but by hope, determination, and a sense of optimism. I urge all of you, not just in health, but in every challenge you face -- don't let the odds define you. Live your own story."
Thx for your insights. We too consider cancer free until Dr confirms otherwise. I’m glad you have been lucky with no new occurrences, but husband had adrenal metastasis which dissipated during/by chemo, and now has a new lung “focus” identified by PetCT. Difficult to just live life during ongoing treatment and its affect on everyday life and plans. All this has occurred in less than 1 year.
While ctDNA may be the “future” of detection, I question the benefit of this costly $5k test for us. Nor perhaps doing Immunotherapy “insurance” during which this new “focus” appeared.
Identifying actual cancer and knowing how to irradicate it quickly is what we need. Perhaps the Star Trek tricorder detector and curer will be developed?
After seeing my husband dwindle down, if I ever get Ca, forget treatment. He’s been through radiation which really took him down. He went in without a cane, now he needs two to walk. Now he is taking a special chemo which he can’t tolerate, so he’s taking only half the recommended dosage. I don’t see any improvement. It’s like we aren’t even married anymore. I was a nurse. I never had any Ca pts. This by far has got to be the most difficult thing I’ve ever done. And it is going to get worse, I just don’t know when. Is this chemo doing anything to help him? His Dr, which I am not a fan of, never calls him. Come on, once a week? He has no idea how’s he is doing other than his complaints.
Honestly I don’t know how a body could. My husband started out fine. He was diagnosed with lung Ca with bone metastasis. He had NO signs or symptoms other than a sore back which wouldn’t feel better. I said, “you better go see the Dr”. Of course he didn’t because had an appt for his annual checkup in a few months. Big mistake. That cancer is having a field day!
Nothing on his blood test which was taken later was abnormal except the alkaline phosphatase at 400+. So this lead to an X-ray, which lead to an MRI, which finally lead a PET scan. OMG! The results showed cancer everywhere! He even had 2 fractured vertebrae which had to be surgically fixed with glue.
It’s not like he was immediately started on radiation either…we kept wondering when ? Then it was 2 weeks of radiation and he finally had to use 2 canes for walking. This is a man that took care of 3.5 acre as now sits, the weeds are growing. He used to be so active and his beautiful muscular legs are gone, he’s so little. He’s taking oral chemo, but can only tolerate 1/2 the dosage. He does walk a lot. That’s also becoming less with time.
I’ve read about this cancer. You can be born with this gene! And never know it. I thought if anything he would get skin Ca from working outside in the sun here in FL for 45 years.
Honestly I don’t know how a body could. My husband started out fine. He was diagnosed with lung Ca with bone metastasis. He had NO signs or symptoms other than a sore back which wouldn’t feel better. I said, “you better go see the Dr”. Of course he didn’t because had an appt for his annual checkup in a few months. Big mistake. That cancer is having a field day!
Nothing on his blood test which was taken later was abnormal except the alkaline phosphatase at 400+. So this lead to an X-ray, which lead to an MRI, which finally lead a PET scan. OMG! The results showed cancer everywhere! He even had 2 fractured vertebrae which had to be surgically fixed with glue.
It’s not like he was immediately started on radiation either…we kept wondering when ? Then it was 2 weeks of radiation and he finally had to use 2 canes for walking. This is a man that took care of 3.5 acre as now sits, the weeds are growing. He used to be so active and his beautiful muscular legs are gone, he’s so little. He’s taking oral chemo, but can only tolerate 1/2 the dosage. He does walk a lot. That’s also becoming less with time.
I’ve read about this cancer. You can be born with this gene! And never know it. I thought if anything he would get skin Ca from working outside in the sun here in FL for 45 years.
Welcome to Mayo Connect @steve74kooczx. I'm so sorry to hear about your husband's struggles. I hope he's at a low point only to begin showing some improvement soon. Lung cancer can be very aggressive, and some of the targeted therapies can also be very effective. My story includes blissfully biking around Key West in February 2020, and then not being able to walk around the block back home by the end of April. I am fortunate to have an oral therapy that has been a good match for my mutation, and fortunate that I tolerate the therapy fairly well too. I agree, I wouldn't have been surprised at a different cancer, but lung cancer took me off guard. Sadly, we've all learned that anyone with lungs can get lung cancer.
You mention that he's on an oral chemo and his cancer is likely from one of the gene mutations. The need to reduce a dose isn't unusual and it can be just as effective. With as widespread as the cancer appears to have been, it may take some time to see improvement.
If you don't mind sharing, which mutation does he have (mine is ALK)? and which drug is he taking?
I was 80 when diagnosed with lung cancer. Stage 3 non smoker. Had chemo and radiation at same time. It was tough but I’m 88 now. Hopefully still no new cancer but one never knows. You just have to hang in there and fight as best you can
I had chemo and radiation at the same time as well. Then mastesised to the bladder and now to the brain. BUT thankfully and with God’s grace everything has gone better than anticipated during the process. I had very few side effects and I am now in remission for the bladder cancer, and this month will be having my 6 month follow up CT of the lungs. I pray for all of us🙏
I had chemo and radiation at the same time as well. Then mastesised to the bladder and now to the brain. BUT thankfully and with God’s grace everything has gone better than anticipated during the process. I had very few side effects and I am now in remission for the bladder cancer, and this month will be having my 6 month follow up CT of the lungs. I pray for all of us🙏
@vcapik58, Lung cancer spreading to the bladder is very uncommon. Or did you have bladder cancer that metastasized to the lungs? Either way, that is a lot to handle.
I wish you all the best with the CT scan follow up. I can imagine waiting for the scan day is nerve wracking. I’m glad to hear that the lesion(s) in the bladder are in remission.
@vcapik58, Lung cancer spreading to the bladder is very uncommon. Or did you have bladder cancer that metastasized to the lungs? Either way, that is a lot to handle.
I wish you all the best with the CT scan follow up. I can imagine waiting for the scan day is nerve wracking. I’m glad to hear that the lesion(s) in the bladder are in remission.
Dear Colleen,
I will be in treatment for the cancer that metastasized to the brain, and the doctor said that he might be able to take care of it in once visit, so that’s good news. I’ll be having the CT Scan of the lungs this Wednesday. it’s my 6 month check-up.
So they did say that the cancer had metastasized to the bladder and the brain.
Thank you for asking and for your kind words.
I’m leaving everything in God’s hands, He has truly come through for me 🙏 in so many ways.
God bless you
I had 6 chemo and 30 radiation treatments over a 30 day period. Today I get the results of my first post treatment CT scan.. Hoping for the best. Have pet scan scheduled for 12/27
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Thx for your insights. We too consider cancer free until Dr confirms otherwise. I’m glad you have been lucky with no new occurrences, but husband had adrenal metastasis which dissipated during/by chemo, and now has a new lung “focus” identified by PetCT. Difficult to just live life during ongoing treatment and its affect on everyday life and plans. All this has occurred in less than 1 year.
While ctDNA may be the “future” of detection, I question the benefit of this costly $5k test for us. Nor perhaps doing Immunotherapy “insurance” during which this new “focus” appeared.
Identifying actual cancer and knowing how to irradicate it quickly is what we need. Perhaps the Star Trek tricorder detector and curer will be developed?
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Like -
Helpful -
Hug
1 ReactionAfter seeing my husband dwindle down, if I ever get Ca, forget treatment. He’s been through radiation which really took him down. He went in without a cane, now he needs two to walk. Now he is taking a special chemo which he can’t tolerate, so he’s taking only half the recommended dosage. I don’t see any improvement. It’s like we aren’t even married anymore. I was a nurse. I never had any Ca pts. This by far has got to be the most difficult thing I’ve ever done. And it is going to get worse, I just don’t know when. Is this chemo doing anything to help him? His Dr, which I am not a fan of, never calls him. Come on, once a week? He has no idea how’s he is doing other than his complaints.
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Helpful -
Hug
1 ReactionHonestly I don’t know how a body could. My husband started out fine. He was diagnosed with lung Ca with bone metastasis. He had NO signs or symptoms other than a sore back which wouldn’t feel better. I said, “you better go see the Dr”. Of course he didn’t because had an appt for his annual checkup in a few months. Big mistake. That cancer is having a field day!
Nothing on his blood test which was taken later was abnormal except the alkaline phosphatase at 400+. So this lead to an X-ray, which lead to an MRI, which finally lead a PET scan. OMG! The results showed cancer everywhere! He even had 2 fractured vertebrae which had to be surgically fixed with glue.
It’s not like he was immediately started on radiation either…we kept wondering when ? Then it was 2 weeks of radiation and he finally had to use 2 canes for walking. This is a man that took care of 3.5 acre as now sits, the weeds are growing. He used to be so active and his beautiful muscular legs are gone, he’s so little. He’s taking oral chemo, but can only tolerate 1/2 the dosage. He does walk a lot. That’s also becoming less with time.
I’ve read about this cancer. You can be born with this gene! And never know it. I thought if anything he would get skin Ca from working outside in the sun here in FL for 45 years.
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Helpful -
Hug
1 ReactionWelcome to Mayo Connect @steve74kooczx. I'm so sorry to hear about your husband's struggles. I hope he's at a low point only to begin showing some improvement soon. Lung cancer can be very aggressive, and some of the targeted therapies can also be very effective. My story includes blissfully biking around Key West in February 2020, and then not being able to walk around the block back home by the end of April. I am fortunate to have an oral therapy that has been a good match for my mutation, and fortunate that I tolerate the therapy fairly well too. I agree, I wouldn't have been surprised at a different cancer, but lung cancer took me off guard. Sadly, we've all learned that anyone with lungs can get lung cancer.
You mention that he's on an oral chemo and his cancer is likely from one of the gene mutations. The need to reduce a dose isn't unusual and it can be just as effective. With as widespread as the cancer appears to have been, it may take some time to see improvement.
If you don't mind sharing, which mutation does he have (mine is ALK)? and which drug is he taking?
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Helpful -
Hug
1 ReactionYES….I had Several brain radiation treatments while on target therapy (Targresso ) in 2020. You do what you have to do….. I am still alive!
I was 80 when diagnosed with lung cancer. Stage 3 non smoker. Had chemo and radiation at same time. It was tough but I’m 88 now. Hopefully still no new cancer but one never knows. You just have to hang in there and fight as best you can
Good luck
I had chemo and radiation at the same time as well. Then mastesised to the bladder and now to the brain. BUT thankfully and with God’s grace everything has gone better than anticipated during the process. I had very few side effects and I am now in remission for the bladder cancer, and this month will be having my 6 month follow up CT of the lungs. I pray for all of us🙏
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Helpful -
Hug
3 Reactions@vcapik58, Lung cancer spreading to the bladder is very uncommon. Or did you have bladder cancer that metastasized to the lungs? Either way, that is a lot to handle.
I wish you all the best with the CT scan follow up. I can imagine waiting for the scan day is nerve wracking. I’m glad to hear that the lesion(s) in the bladder are in remission.
Are you currently on treatment?
Dear Colleen,
I will be in treatment for the cancer that metastasized to the brain, and the doctor said that he might be able to take care of it in once visit, so that’s good news. I’ll be having the CT Scan of the lungs this Wednesday. it’s my 6 month check-up.
So they did say that the cancer had metastasized to the bladder and the brain.
Thank you for asking and for your kind words.
I’m leaving everything in God’s hands, He has truly come through for me 🙏 in so many ways.
God bless you
I had 6 chemo and 30 radiation treatments over a 30 day period. Today I get the results of my first post treatment CT scan.. Hoping for the best. Have pet scan scheduled for 12/27