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cindylb
@cindylb

Posts: 151
Joined: Jan 05, 2017

Newly diagnosed Lung cancer -trying to get to an accurate diagnosis?

Posted by @cindylb, Sun, Mar 11 3:09pm

My husband has been going through multiple tests over the last year. He has COPD and they have found a tumor in his lung. The tumor is cancer but they can't determine what kind? They said it showed signs of an upper GI cancer but all tests so far show no other cancer (PET, MRI of brain) waiting on the endcoscopy results from last week but that also looks clear according to the GI doctor. I have read about a lung cancer that mimics upper GI cancer in pathology called Pulmonary Enteric Adenocarcinoma. The doctors are considering it but we still don't know.. My poor husband has endured pretty much every test there is at this point. EKG's, EEG's, Heart Stress Tests and Monitoring, PET, CT and MRI scans, a lung biopsy, esophagus biopsy and upper GI biopsy and subcarnial lymph node biopsy. Additionally over this past year he has been diagnosed with Parkinsons (which they say he does not have now) and has had other symptoms which no tests show any disease (Kidney's Liver, etc). I have also read up on something called paraneoplastic symdrome which might account for his fainting spells? His lack of stable blood pressure? (his blood pressure can go from 200 to 74 in a matter of minutes (the upper blood pressure number…..systolic). This site has been so helpful to me on my breast cancer journey and also throughout his 'misdiagnosis' of Parkinsons over the past year. Hoping someone might have some insight or thoughts? We will meet with his new oncologist on Wednesday and I have a second opinion oncologist on board is needed. We are in Colorado with Kaiser and have been treated well but I am looking at a second medical source (the University of Colorado Health Center) as they have more resources and experts as well as clinical trials….but FIRST, we need a diagnosis and it's been over 6 weeks and we are no closer. Thanks for any insight you may have to share.

REPLY

Hello Cindy-
I'm so sorry that you and your husband are going through this. I cannot imagine what you are feeling with the multitude of tests and not having a definitive diagnosis. I hope that you return after seeing the oncologist on Wednesday and let us know what they say. I'm sending you well wishes, peace and I really hope you both find some answers. Please keep us updated.

Liked by cindylb

@jamienolson

Hello Cindy-
I'm so sorry that you and your husband are going through this. I cannot imagine what you are feeling with the multitude of tests and not having a definitive diagnosis. I hope that you return after seeing the oncologist on Wednesday and let us know what they say. I'm sending you well wishes, peace and I really hope you both find some answers. Please keep us updated.

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Thank you!

Hello- When I had my first lung cancer I had a multitude of tests too. They are difficult because not only are they invasive but you have to wait for the results, keeping us on tenterhooks. Secondly we have to return to the hospital many times, increasing the chances of picking up something. Then there has to be consults and if things are uncertain, more decisions have to be made. I'm so sorry that you both have gone through so much, and as difficult as all of this is thank goodness we have so many options to chose from. I wish you the best of luck. try to stay strong.

Liked by cindylb

Hi Cindylb. I remember when my husband was being diagnosed, what a meandering path it was. They thought it was his heart, then acid reflux, then emphysema. The better part of a year later after many many tests and diagnostic surgeries, we found it was indeed lung cancer. Now 18 months after that point he is cancer free and slowly gaining strength. It is a wretched thing to go through and I'm pulling for you! Be strong! I kept telling myself, "I can eat this elephant, one bite at a time!"

Liked by Jamie Olson, cindylb

Hello Cindy-
I am so sorry to hear about yours and your husbands journey! Hopefully, you will find the correct course of treatment.

In May, 2015, my wife was treated for NSCLC in her right lung with surgery, chemo, and ultimately immunotherapy (Opdivo), but the tumors continued to grow and the cancer metastasized to the left lung.

Finally, in 2016 our oncologist at Mayo ordered a Molecular Study, from which he determined the tumors were from a breast cancer mutation! Fall of 2016, he changed her treatment to a clinical trial, which seems to have neutralized the tumor growth with minimal side effects. She has now had 15 months of infusions every three weeks with a remarkably good quality of life!

Bottom line…I would recommend you ask your oncologist to order a molecular study of the biopsey to insure the proper course of treatment. He may need to do another lung biopsy as the original may not have yielded a large enough sample. That is what was required for my wife.
Best of luck to you and your husband!

@burrkay

Hello Cindy-
I am so sorry to hear about yours and your husbands journey! Hopefully, you will find the correct course of treatment.

In May, 2015, my wife was treated for NSCLC in her right lung with surgery, chemo, and ultimately immunotherapy (Opdivo), but the tumors continued to grow and the cancer metastasized to the left lung.

Finally, in 2016 our oncologist at Mayo ordered a Molecular Study, from which he determined the tumors were from a breast cancer mutation! Fall of 2016, he changed her treatment to a clinical trial, which seems to have neutralized the tumor growth with minimal side effects. She has now had 15 months of infusions every three weeks with a remarkably good quality of life!

Bottom line…I would recommend you ask your oncologist to order a molecular study of the biopsey to insure the proper course of treatment. He may need to do another lung biopsy as the original may not have yielded a large enough sample. That is what was required for my wife.
Best of luck to you and your husband!

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Thank you for sharing this! I hope your wife continues to do well on her treatment plan. I am a breast cancer survivor of 4 years but my diagnosis and treatment were much more straightforward. I wasn't prepared for what my husband is going through but I now see why the doctors are being so particular about the testing and diagnosis. We need to know exactly what we're dealing with here. My husband's latest biopsy was of a lymph node and they ordered additional testing with that to get more information…..Your post has really helped me today and I appreciate your support and you taking the time.

@richm

Hi Cindylb. I remember when my husband was being diagnosed, what a meandering path it was. They thought it was his heart, then acid reflux, then emphysema. The better part of a year later after many many tests and diagnostic surgeries, we found it was indeed lung cancer. Now 18 months after that point he is cancer free and slowly gaining strength. It is a wretched thing to go through and I'm pulling for you! Be strong! I kept telling myself, "I can eat this elephant, one bite at a time!"

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Thank you! I'm sorry for what you've gone through on your meandering path but you have given me some comfort in knowing we're not alone on the 'meandering path'. My husband has had symptoms of 'something' for over a year now….perhaps this cancer, everything else checks out fine. So glad to hear your husband is cancer free now and recovering. I will be borrowing your 'one bite at time elephant analogy' as we move forward.

We are now at about a 70% diagnosis of Lung Cancer with more pathology and tests to come. The last biopsy of the lymph node came back inconclusive but they have pretty much ruled out upper GI cancer and Kidney Cancer. Our diagnosis to date is Stage 3 Lung Cancer with a small tumor in the right middle lobe and one active subcarnial lymph node. The options presented early on here for treatment is radiation and chemotherapy. He (and I) are both worried about the side effects and intensity of the chemotherapy (we've seen this at it's worst with my sister's Stage 4 Lung Cancer treatment 8 years ago). The oncologists say that the primary symptom of the treatment would be extreme fatigue and that they can manage the related stomach symptoms (the nausea and diarrhea). What has been everyone's experience if that's the option we will have for treatment? My husband is very hesitant to do the chemo and that would give him maybe 1-2 years where treatment may increase that up to 5 years or more. I'd love to get some 'real, on the ground' feedback from patients who have experienced this recently. They say they have made some progress improving the side effects symptoms since I cared for my sister 8 years ago…..it was pretty grueling for her. Thank you!

@cindylb

We are now at about a 70% diagnosis of Lung Cancer with more pathology and tests to come. The last biopsy of the lymph node came back inconclusive but they have pretty much ruled out upper GI cancer and Kidney Cancer. Our diagnosis to date is Stage 3 Lung Cancer with a small tumor in the right middle lobe and one active subcarnial lymph node. The options presented early on here for treatment is radiation and chemotherapy. He (and I) are both worried about the side effects and intensity of the chemotherapy (we've seen this at it's worst with my sister's Stage 4 Lung Cancer treatment 8 years ago). The oncologists say that the primary symptom of the treatment would be extreme fatigue and that they can manage the related stomach symptoms (the nausea and diarrhea). What has been everyone's experience if that's the option we will have for treatment? My husband is very hesitant to do the chemo and that would give him maybe 1-2 years where treatment may increase that up to 5 years or more. I'd love to get some 'real, on the ground' feedback from patients who have experienced this recently. They say they have made some progress improving the side effects symptoms since I cared for my sister 8 years ago…..it was pretty grueling for her. Thank you!

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There is no doubt this is respectfully a sensitive matter when diagnosed with lung cancer.
My proper diagnosis and treatment was at Mayo Clinic. I trust my life in their hands.
At my 10 year celebration of being gratefully alive, one of my doctors who is also a leading lung cancer researcher held up the recent New England Journal of Medicine and said, “Unlike 10 years ago there are now 1100 therapies for lung cancer!”
I will never forget the two years “proceeding my proper diagnosis” when local small town physicians thought I had asthma, not lung cancer!
If you are confident in your treatment center and physicians and they recognize the importance of new therapies and the amazing lung cancer treatments discovered in the last few years, think
about your quality of life. I continue to see many people are living with cancer for years.
I would personally ask every question regarding diagnosis and treatment and proceed. Resiliency is remembering to enjoy life everyday. Many of my physicians have told me “Attitude is 50% of surviving”!

All my best. Let’s stay connected. You both are in my thoughts.
hugs

Liked by cindylb, Wally

Thank you so much! Your perspective and first hand experience is so very helpful and appreciated. Eating that elephant one bite at a time!

@cindylb

We are now at about a 70% diagnosis of Lung Cancer with more pathology and tests to come. The last biopsy of the lymph node came back inconclusive but they have pretty much ruled out upper GI cancer and Kidney Cancer. Our diagnosis to date is Stage 3 Lung Cancer with a small tumor in the right middle lobe and one active subcarnial lymph node. The options presented early on here for treatment is radiation and chemotherapy. He (and I) are both worried about the side effects and intensity of the chemotherapy (we've seen this at it's worst with my sister's Stage 4 Lung Cancer treatment 8 years ago). The oncologists say that the primary symptom of the treatment would be extreme fatigue and that they can manage the related stomach symptoms (the nausea and diarrhea). What has been everyone's experience if that's the option we will have for treatment? My husband is very hesitant to do the chemo and that would give him maybe 1-2 years where treatment may increase that up to 5 years or more. I'd love to get some 'real, on the ground' feedback from patients who have experienced this recently. They say they have made some progress improving the side effects symptoms since I cared for my sister 8 years ago…..it was pretty grueling for her. Thank you!

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Hi Cindy-
Thank you for the update.
Are they recommending chemo, etc. before they even know for certain that it is cancer?
Sorry to be so direct, but if that is the case my recommendation is that you get to a cancer clinic…weather it be Mayo or whoever!
There are two types of lung cancer…Non Small Cell Lung Cancer (NSCLC) and Small Cell Lung Cancer. Two distinctly different cancers. NSCLC is very slow growing (putzy) and very hard to detect with any scans, etc.
My wife had gone through 18 months of trial and error treatment and many bronchoscope biopsies, an unnecessary surgery, and finally we were told it could “possibly be an adnocarrcinoma”.
We were sent to a thoracic surgeon who wasn’t sure it was a cancer, but wanted to remove the lower third of her right lung. That’s when we called a timeout, packed up her records and sent them to Mayo Clinic in Rochester.
Within 48 hours we were notified that she had lung cancer and we needed to get there so they could operate! A week later, the doctor removed 2/3 of her lung.
That was our experience, three years ago…she had stage 3 NSCLC…we opted for the chemo, and later were glad we did, because after the cancer had metastasized to her left lung, she qualified for a clinical trial which has her enjoying a great quality of life.
So, in our opinion the chemo therapy was rough but had she not opted for it she would likely have not made it.
Trust what Linda Wortman says…”get the proper diagnosis”…don’t continue with the local physicians if they are puzzled by their findings. And, yes attitude is 50% of surviving!
Hope this helps with your decisions and you find the proper path for your husband.
You and your husband are in our thoughts and prayers!

Hi Cindy,
Just checking in to see how you and your husband are doing. Any new developments on the diagnosis and treatment options?

It has been more tests and still more up in the air. The doctors have finally decided, tentatively, that it is a lung cancer (since it's only in his lung) yet today we were to have a another test to try and biopsy the lymph node in question. They failed to get lymph node tissue during the last Endoscopy test so this was an "EBUS" procedure. We got there this morning (on his 65th birthday) only to have the test cancelled for a suspected heart condition (which he has had for a year) that we have been unable to quantify. That heart 'condition' is SVT and was diagnosed by a clever cardiologist today, which is good. It's congenital and easily treated. So, we have an answer for his fainting spells over the last couple years but still no lymph node test. That's been pushed off to next week. Following that test and pathology we're on to meet with a surgeon (in case that is an option) and then perhaps, finally after three months, a firm diagnosis and treatment plan. They say his lung cancer is Stage 3a from what they now know…………but I'm not holding my breath because this has been such a winding road of miscalculations so far. Adding more stress to our lives is that I've spent the last two weeks and back and forth with vets about one of our cats who became suddenly ill and is now terminally ill with an unknown diagnosis. I think at this point I just want some clarity on anything from anyone in any medical field. These weeks have been very stressful and unfortunate and I know there is more uncertainty to come and then many decisions. I just hope we can make those decisions based on some solid facts. Thank you so much for reaching out. It is so very appreciated.

Hi Cindy-
I know it is difficult, but keep the faith!
At least they solved the heart issues.
The anxiety of it seems difficult I am sure. I recall the many dead ends we went through with Kay. Lung cancer is a tough one to diagnose it seems. Everyone I have met with it have found that to be true. In our case, the local pulmonologist refused to admit it was cancer! He insisted on more bronchoscope tests to determine the cause of Kay’s repeated bouts of pneumonia and constant belching at night.
Hers was a non small cell lung cancer NSCLC…most difficult to detect on any ct scans, because it moves so slowly that it doesn’t “light up” on the scans.
It was only after we got frustrated with the many months of indecision that we finally turned to the doctors at Mayo in Rochester. Had we not done that, I am convinced Kay would no longer be on the planet! Once we sent Mayo her records it was only a matter of a few days before we finally got a decisive diagnosis.
So, keep the faith and keep asking questions! And above all stay positive!!

Liked by cindylb

Hi Cindy,
I feel your frustration and remember all too well. When my husband was in the process of being diagnosed with stage 3 mesothelioma it took the better part of a year with repeated ER visits, labs, scans etc etc. Treatment has been a convoluted path too, with many serious complications and glitches along the way. It sometimes seemed we were making no progress. But now 19 months since the start of treatment we can look back at the timeline and see the gradual steps forward that really add up to a huge amount of improvement. Miraculous almost!
It's not easy. It's dreadful! But keep plodding along. Try to focus on just the next step. Soon you will have come a long way, with hopefully enormous healing.

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