Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@burrkay

@cindylb my heart goes out to you and your husband.
My wife is a stage 4 lung cancer patient, having had a double lobectomy in 2015. After not responding to opdivo treatments, her Mayo oncologist ordered a fresh lung biopsy and sent it off for a molecular study to determine the exact type of mutation.
The results were that her molecular study of the biopsy identified amplification of HER-2…common in breast cancer patients, but rare in lung cancer.
Treatment was changed to a trial doublet of meds…which she has responded to well.
Therefore, my only suggestion is to consult with your Husband’s oncologist about whether it might be worth pursuing a molecular study to define the exact mutation to better establish the correct treatment path.
Good luck!

Jump to this post

Thank you for your kind thoughts and input. That's a good solid suggestion that may help. Hugs to you and your wife and wishes for her continued good response to the new treatment.

REPLY
@cindylb

Hello all,
I have shared in this group and continue to share in a few others as well. Today I'm hoping that someone here might have some insight or suggestions for me regarding my husband's cancer diagnosis.

I am a breast cancer survivor, so not new to cancer tests, diagnosis or treatment options but my husband's situation is quite unusual and frustrating, so here's hoping someone may have some helpful thoughts or resources.

In January 2018 my husband was diagnosed with cancer, a tumor in his lung and the same cancer type in his subcarinal lymph node. Multiple biopsies, scans and tests and a second opinion from our largest, most respected cancer hospital in the area – the diagnosis was: Cancer of Unknown Primary. CUP is a cancer that doesn't match the area where it is found. The tumor is in my husband's lung and the lymph node nearby. There is no other metastasis of the cancer. The pathology doesn't match lung cancer and it does not match cancer of the upper GI tract, but it has elements of each.

We have been doing PET scans every 3 months to see if the cancer might present itself elsewhere (other than the lung) but it has not. It has been 16 months now. When he was diagnosed they gave him less than a year to live, Stage IV terminal cancer. We have organized our lives accordingly, which has caused great stress. They have now downgraded the cancer to Stage III. The tumor has remained mostly stable over the past year. The PET scans show increased activity in the lymph node on some scans and less activity on others.

The good news is that the cancer is stable and my husband is still here. The bad news is that we still don't know what we're dealing with or what, if anything, can be done. My husband has had no surgery, no radiation, no chemo, no targeted or immunotherapy……they don't know what to use unless they use everything, as in several kinds of chemo, to stop it. My husband has refused chemo without knowing what type of cancer we're facing.

At the time of diagnosis my husband had an undiagnosed heart condition that caused considerable symptoms and made him appear quite ill. That has been resolved. He was misdiagnosed with Parkinsons (he does not have that) and the surgery to correct the heart defect resolved the symptoms that looked like Parkinsons. He does have moderate COPD, which is fairly well controlled with his medications, O2 and other treatments.

So here we are at 16 months (thank goodness) and my husband has this odd cancer diagnosis. He doesn't feel well and we're trying to figure out if that's the result of the COPD or the cancer. The cancer is spreading via the lymph node through his body but his symptoms, according to the doctors, are not specific to the cancer. He does cough up some brown stuff every day now (COPD or cancer?) and has considerable fatigue. He also has some heartburn and takes prescription meds for that, which control or remedy it. That's it………..

The doctors (several of them) can't give us any answers or plan other than PET scans every 3 months. My husband has been using medical marijuana as his only treatment for the cancer (at the direction of his doctors). That could be reducing inflammation and possibly some of the cancer activity.

Has anyone had a similar situation or have any thoughts from things you may have researched. The doctors are leaning toward lung cancer now because the cancer isn't forming any tumors or causing any symptoms outside the lung??

If you got through this long email (thanks) and any thoughts are appreciated.

Jump to this post

@cindylb– How awful for you and your husband to endure so much and how frustrating it must be not to know what type of cancer your husband has. I agree with @burrkay about asking your husband's doctor about a molecular study for the purposes that he stated. Believe it or not it's not common not to be able to identify where the cancer started but it does happen. And often times with advanced cancers the origin of the cancer is never found because the cancer cells are poorly differentiated (haven't matured enough to be identified). Parts of my first cancer were poorly differentiated. Andhttps://www.cancerresearchuk.org/about-cancer/cancer-unknown-primary-cup/about sometimes the original cancer is fought off but a secondary one forms in the lymph system.
@ina3 and her dad have been struggling with a similar situation and perhaps she will chime in here., especially the discussion she is having with @colleenyoung on Feb 26, this year. You can also check out her posts.
Have you considered having his biopsies looked at by another lab?

Liked by cindylb

REPLY
@merpreb

@cindylb– How awful for you and your husband to endure so much and how frustrating it must be not to know what type of cancer your husband has. I agree with @burrkay about asking your husband's doctor about a molecular study for the purposes that he stated. Believe it or not it's not common not to be able to identify where the cancer started but it does happen. And often times with advanced cancers the origin of the cancer is never found because the cancer cells are poorly differentiated (haven't matured enough to be identified). Parts of my first cancer were poorly differentiated. Andhttps://www.cancerresearchuk.org/about-cancer/cancer-unknown-primary-cup/about sometimes the original cancer is fought off but a secondary one forms in the lymph system.
@ina3 and her dad have been struggling with a similar situation and perhaps she will chime in here., especially the discussion she is having with @colleenyoung on Feb 26, this year. You can also check out her posts.
Have you considered having his biopsies looked at by another lab?

Jump to this post

Thank you for your reply and suggestions @merpreb
We have had 3 labs look at my husbands biopsies and they all came to the same 'non conclusion'. We also had what they call Foundation Testing through the University of Colorado, which also came back inconclusive. I will take a look at the other conversations and see if I can find any further information. It is very frustrating and difficult…..to have a serious cancer and not have any clear options or path forward. That's why I'm hoping that someone here on the Mayo site may have a similar situation. I am getting some good feedback and hopefully we can make this second year with my husband's cancer more productive or at least more informational. Hugs.

REPLY

Hello all,
my father (72) has recently been diagnosed with non-small non-squamous cell lung cancer (adenocarcinoma). He is a smoker for 50 years. He stopped smoking almost 3 months ago when he started having a persistent cough leading to his being diagnosed with pneumonia and later with the cancer. He is between stage 3 and 4 as the doctors are not sure if a spot in his left lung is a metastasis or not. His primary tumor is in his right lung, around 4 cm, no metastases in other organs, just in the lymph nodes around the primary tumor (this is what I understand from the doctors explanation). They saw some liquid in his heart so they backed-off their initial decision to start him on combined radio-chemo treatment and he just had his first keytruda infusion.

He has a persistent cough and I was wondering if somebody had this as well. It is not a deep cough, it is like it's coming from his throat rather than his lungs. It's more like a non-productive cough – no blood, just some white foamy saliva after a huge cough episode. I was wondering is this from the cancer, as I read the cough is different, or is it possible it's an effect of his stopping smoking, or should we be seeking for any other reason (I read there is something called psychogenic cough). I would appreciate it if somebody has had any experience with something that can relief the cough even a little bit.

Thank you and I wish good luck to each one of you!

(sorry for my English, not my mother tongue)

REPLY
@cindylb

Thank you for your kind thoughts and input. That's a good solid suggestion that may help. Hugs to you and your wife and wishes for her continued good response to the new treatment.

Jump to this post

@cindylb Good luck to you and your husband in getting answers.

This is a link to the web site for Foundation One…

https://www.foundationmedicine.lt/content/dam/rfm/lt_LT/Documents/Foundation%20Medicine%20Sample%20Report.pdf

The “Sample” report shown is very similar to that which came back from their study of my wife’s lung biopsy. It took 5 weeks to get the results…so be patient.

My suggestion is that you have your husband’s oncologist consider them as a qualified resource.

Their recommended treatment strategy (in my wife’s case) was implemented by our Mayo oncologist for her in December of 2016.

She is still on the planet, and living a pretty normal life!

Liked by cindylb

REPLY
@manderlay

Hello all,
my father (72) has recently been diagnosed with non-small non-squamous cell lung cancer (adenocarcinoma). He is a smoker for 50 years. He stopped smoking almost 3 months ago when he started having a persistent cough leading to his being diagnosed with pneumonia and later with the cancer. He is between stage 3 and 4 as the doctors are not sure if a spot in his left lung is a metastasis or not. His primary tumor is in his right lung, around 4 cm, no metastases in other organs, just in the lymph nodes around the primary tumor (this is what I understand from the doctors explanation). They saw some liquid in his heart so they backed-off their initial decision to start him on combined radio-chemo treatment and he just had his first keytruda infusion.

He has a persistent cough and I was wondering if somebody had this as well. It is not a deep cough, it is like it's coming from his throat rather than his lungs. It's more like a non-productive cough – no blood, just some white foamy saliva after a huge cough episode. I was wondering is this from the cancer, as I read the cough is different, or is it possible it's an effect of his stopping smoking, or should we be seeking for any other reason (I read there is something called psychogenic cough). I would appreciate it if somebody has had any experience with something that can relief the cough even a little bit.

Thank you and I wish good luck to each one of you!

(sorry for my English, not my mother tongue)

Jump to this post

@manderlay– Good morning and welcome to Mayo Connect. Your English is very good. I can not imagine how difficult it must be to see your dad so ill and he's lucky to have you doing some research for him. I am a lung cancer survivor and your dad's cough is very common for people with lung cancer with or without blood. I had blood when I coughed. I think that after 3 weeks that the cough from smoking should pretty much be gone, but I'm not sure. Maybe your dad feels a trickle in his throat that makes him cough. Sometimes heart conditions can cause coughing. You might want to look that up as to why that happens. He could also have some post-nasal drip that is causing this, or a combination of them. And some medicines can cause coughing. It's so difficult to know or pinpoint what type of cough it is and from what but since he has lung cancer I would place my bet on that. There are lots of meds to help calm coughing but your dad's oncologist should be the person to prescribe something because he will know which meds won't interfere with his chemo.
It's very important that he drink lots of water to help rid his body of chemicals and help keep his mucus from getting thick. Is your dad having any pain? Other than the cough does he have any other symptoms? It's very good news that your dad has no metastasis in other organs. Do the doctors know why there is fluid around his heart?

Liked by manderlay

REPLY
@burrkay

@cindylb Good luck to you and your husband in getting answers.

This is a link to the web site for Foundation One…

https://www.foundationmedicine.lt/content/dam/rfm/lt_LT/Documents/Foundation%20Medicine%20Sample%20Report.pdf

The “Sample” report shown is very similar to that which came back from their study of my wife’s lung biopsy. It took 5 weeks to get the results…so be patient.

My suggestion is that you have your husband’s oncologist consider them as a qualified resource.

Their recommended treatment strategy (in my wife’s case) was implemented by our Mayo oncologist for her in December of 2016.

She is still on the planet, and living a pretty normal life!

Jump to this post

Thank you for the information. We have already done the Foundation Testing via our cancer center here in Colorado at CU Medical Center and again, no results, except they found one element of the test that suggested lung cancer vs. upper GI but not enough to recommend treating for lung cancer. It didn't offer any clear answers either. So on we go. So pleased to hear your wife is still here fighting and living as best she can. Hugs.

REPLY
@merpreb

@manderlay– Good morning and welcome to Mayo Connect. Your English is very good. I can not imagine how difficult it must be to see your dad so ill and he's lucky to have you doing some research for him. I am a lung cancer survivor and your dad's cough is very common for people with lung cancer with or without blood. I had blood when I coughed. I think that after 3 weeks that the cough from smoking should pretty much be gone, but I'm not sure. Maybe your dad feels a trickle in his throat that makes him cough. Sometimes heart conditions can cause coughing. You might want to look that up as to why that happens. He could also have some post-nasal drip that is causing this, or a combination of them. And some medicines can cause coughing. It's so difficult to know or pinpoint what type of cough it is and from what but since he has lung cancer I would place my bet on that. There are lots of meds to help calm coughing but your dad's oncologist should be the person to prescribe something because he will know which meds won't interfere with his chemo.
It's very important that he drink lots of water to help rid his body of chemicals and help keep his mucus from getting thick. Is your dad having any pain? Other than the cough does he have any other symptoms? It's very good news that your dad has no metastasis in other organs. Do the doctors know why there is fluid around his heart?

Jump to this post

Hello @merpreb, thank you very much for the nice words. I am very happy for you beating the cancer! I wish you all the best!
I think for now the cough is my father's main symptom. Maybe I can identify the fatigue as a second symptom. Other than that I don't think he has other symptoms. I booked appointments for next week for a cardiologist and for а pulmonologist today, I hope the latter give us some ideas for cough relief. The doctors do not know what caused the pericardial effusion (the liquid around the heart) because they decided not to drain it so it is not tested. They gave him some medication for that and next week when we see the cardiologist they will measure the liquid and see if the medication works. If it does it would mean that it is probably caused by some infection.
Was your cough all the time? He has some periods of time in which he does not cough at all but there are the others that he just can't stop and I worry because it makes it hard to sleep. And we all know that you should sleep to have better chances of fighting.

REPLY

@manderlay– Hi. Fatigue is the number one complaint for any type of treatment for cancer. I was SO tired, it's a fatigue that is so deep that even a nap doesn't help, or for that matter sleeping at might. All he can do is rest and lots of water. I'm glad that he will see his doctors soon. How are his spirits? How is the rest of the family holding up- including you?

REPLY

Hi everyone been awhile since i’ve Been in here. Hope everyone is doing the best they can and relying on family , friends, doctors and their faith in going on each day. Life is a gift granted it has a lot of bumps in the road

REPLY
@sakota

Hi everyone been awhile since i’ve Been in here. Hope everyone is doing the best they can and relying on family , friends, doctors and their faith in going on each day. Life is a gift granted it has a lot of bumps in the road

Jump to this post

Hi Joan- How are you? Lots of new posts. Can you tell us how your healing is going?

REPLY

Update friend had his radiation consultation on Monday to be 10 days from what said Monday – Friday with Saturday & Sunday off – called today while gone
for the appointment for the for the mask & simulation set up for this coming Wednesday. there could be up to 12 days all total with the set-up and follow up after the radiation treatments.

Back from the Genomics and Biospy (https://iuhealth.org/find-medical-services/precision-genomics the skinny guy in the blue suit is the one we met with Dr. Schneider) and hoping the ultrasound lab did not screw up – they done the LT Axilla Lymph node (this one that has shrunk & responding to treatment and not growing) was under the impression that they were to do the supraclavicular neck lymph node which is the one is growing and not responding to chemo & prembo This took well over an hour longer than before Guess they thought it would be safer to the the LT Axilla Lymph node than the supraclavicular neck lymph node it is very noticeable in size.

The literature we got the testing is GPS Cancer molecular profiling and Liquid GPS The Genomics Dr. looked mainly at the supraclavicular this was to find out if there is any other chemo/treatment to get it under control Right now i don't see in my mid how testing etc the wrong lymph node will provide the data they want but what do I know….

Shall be a tiring couple of weeks with the radation trips…

REPLY
@reibur1951

Update friend had his radiation consultation on Monday to be 10 days from what said Monday – Friday with Saturday & Sunday off – called today while gone
for the appointment for the for the mask & simulation set up for this coming Wednesday. there could be up to 12 days all total with the set-up and follow up after the radiation treatments.

Back from the Genomics and Biospy (https://iuhealth.org/find-medical-services/precision-genomics the skinny guy in the blue suit is the one we met with Dr. Schneider) and hoping the ultrasound lab did not screw up – they done the LT Axilla Lymph node (this one that has shrunk & responding to treatment and not growing) was under the impression that they were to do the supraclavicular neck lymph node which is the one is growing and not responding to chemo & prembo This took well over an hour longer than before Guess they thought it would be safer to the the LT Axilla Lymph node than the supraclavicular neck lymph node it is very noticeable in size.

The literature we got the testing is GPS Cancer molecular profiling and Liquid GPS The Genomics Dr. looked mainly at the supraclavicular this was to find out if there is any other chemo/treatment to get it under control Right now i don't see in my mid how testing etc the wrong lymph node will provide the data they want but what do I know….

Shall be a tiring couple of weeks with the radation trips…

Jump to this post

@reibur1951– Good morning. It's incredible the new terms and treatments that have shown up for lung cancer just in the past few years. You are a medical dictionary now! Did you ask why they did the biopsy on the nodule that was showing success?

Liked by alamogal635

REPLY

Hello all,
Well………….results are in from my husband's latest PET scan for his 'possible lung, we don't really know what kind of cancer it is' test. Over a year of tests and they still don't have any more information on the cancer type, there is no visible point of origin or type, the tumor in my husband's lung has gotten smaller (only slightly) and the activity in his lymph node and cancer activity in his blood is up (only slightly). The doctors assessment, "Well, we thought when we first diagnosed this that you would be dead now, but the cancer, as of today is 'stable' and we'll see you again in three months".
It's good news at first glance but it is still a mystery, very unsettling and frustrating, as there is still no path forward, no treatment plan and no answers. Oddest thing ever. Hugs to all.

REPLY
@cindylb

Hello all,
Well………….results are in from my husband's latest PET scan for his 'possible lung, we don't really know what kind of cancer it is' test. Over a year of tests and they still don't have any more information on the cancer type, there is no visible point of origin or type, the tumor in my husband's lung has gotten smaller (only slightly) and the activity in his lymph node and cancer activity in his blood is up (only slightly). The doctors assessment, "Well, we thought when we first diagnosed this that you would be dead now, but the cancer, as of today is 'stable' and we'll see you again in three months".
It's good news at first glance but it is still a mystery, very unsettling and frustrating, as there is still no path forward, no treatment plan and no answers. Oddest thing ever. Hugs to all.

Jump to this post

As you say at first glance it is good, but I can see how you would feel unsettled and frustrated. Hope morel night comes to help you and your husband know what is going on. It must be difficult not to KNOW. Praying for you both and hoping you get more clarification between now and the next three months.

REPLY
Please login or register to post a reply.