Living with lung cancer - Introduce yourself & come say hi

Hello Colleen, here is a link to my youngest son’s utube video that helps with meditation & relaxation that is very good to listen to for calm & reducing stress.

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.

@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!

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.

@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?

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.