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

Posted by cindylb @cindylb, Mar 11, 2018

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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@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!

Jump to this post

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!

REPLY

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

REPLY

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.

REPLY

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!!

REPLY

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.

REPLY

Update on my husband's cancer journey and welcoming anyone's thoughts on how we can proceed and what pitfalls to avoid (at least those pitfalls we haven't already fallen into). Our experience may be common or perhaps it's not. My husband now has Medicare but has a supplement with Kaiser, which is a closed HMO. That doesn't preclude us from seeking care from another provider like Mayo but the situation financially is already very concerning. I do hate to think that my husband's life could come down to what we can afford but we have to be realistic that good healthcare and options are expensive and we are not wealthy (well not anymore after my two breast cancer journeys) that said, I am reading with interest the kudos that Mayo receives from patients.
My husband has COPD and was also part of a lung cancer study where he had lung CT scans every 3-6 months. His last scan as part of this program was July 2017. The July scan was clear but by the Jan 2018 they found a tumor in his lung. We have done a lung biopsy, PET Scan and MRI of his brain, and endoscopy, EBUS procedure, numerous blood tests and urinalysis tests. The pathology of the cancer shows as an upper GI cancer. We have done all the tests necessary to rule out everything but colon cancer (that is pending). In addition to the tumor in his lung they have found the same cancer in a lymph node in his chest area. The diagnosis has gone from lung to kidney.rectum, colon, esophagus, stomach, liver and back to lung. There is still no definitive diagnosis although at this point they're settled on Stage 3a lung (reluctantly). We were scheduled to see a surgeon about the possibility of surgery to remove the tumor and lymph node today which the surgeon cancelled saying he wanted a third pathology on the lymph node tissue (at the Mayo Clinic) and a colonoscopy. The oncologist feels the surgery is too risky and is suggesting radiation and chemo and wants to take the existing tissue from the lymph node for molecular testing.
All in all…..four months later and tests too numerous to detail, no firm diagnosis, no agreement on a treatment plan and my husband has shut down on any and all treatment. We've lost confidence in the process, in doctors and lost hope. I'm still plugging away hoping for insight or clarity but I too don't know which way to turn. My husband doesn't want to spend his last 12 months in a system that provides no answers or definitive game plan and I frankly just want my husband alive and as well as he can be.
Is our experience unusual or are we just being wimps over here and need to stay the course looking for answers and pressing forward? It sounds like some of you have been on this winding road and I'd love feedback on how you finally found your way to an answer about the best way forward.

Thanks to all of you who are even willing to read this long winded diatribe.

REPLY

Hang in there, and DONT GIVE UP!
My wife (a 3+ year lung cancer survivor) went through many of the same frustrations you mentioned.
Believe in the physicians at Mayo!
Our salvation was the Mayo oncologist who ordered a MOLECULAR STUDY…it took 5 weeks to get the report, but well worth the wait!
They determined that her mutation was a HER2 – common in breast cancer…changed her therapy to a trial drug and with only a few minor side effects, she is now back to a near normal life style! She has had the therapy for 15 months now! She spends 4 hours every three weeks getting an infusion of the trial therapy drug…well worth it!
We are not wealthy either, there are many solutions to the costs…again Mayo will help you find those solutions!
So, again, hang in there with the Mayo process…they are leaders in treatment of this horrible disease! If you are a Christian, keep up the prayers!

REPLY

As the saga continues. The doctors said they had settled on a diagnosis of Stage 3a lung cancer and then the surgeon cancelled our appointment for a consultation because he said he wanted more tests because he thinks it's rectal cancer and then the radiologist said he thinks it's colon cancer and so we have put off treatment again. They can't agree and we can't move forward. Time for a second opinion I guess….but the health provider we have charged us $440 for talking with Palliative Care for 40 minutes (at the doctors request) and we're seriously running out of money at this point (before treatment begins). My husband is done with all of them and I'm close. $440 to talk about our feelings? Nothing concrete came out of that appointment. Very frustrated with the process.

REPLY

Update on my husband and the multitude of tests and diagnosis hits and misses. This past Friday we met with his oncologist to discuss the final tests which were molecular and genetic tests that they hoped would give them a better idea of the type of cancer and treatment options. In the end they still do not have a definitive diagnosis. They are leaning to lung cancer but as of now it's actually a 'cancer of unknown primary'. It is Stage 4 and they are offering that no treatment options are actually workable. They feel that chemo would simply make him feel ill in the time he has left (months to a year) and that radiation and surgery are also off the table. Our consultation, where they told my husband that he is terminal, has only months to live and they can offer no real options except palliative, was to be about an hour. I wanted more information on clinical trials, alternative treatments, more definition on how long he might expect to live, what symptoms he will have and how we address those……well……the doctor walked out of the appointment after 25 minutes because she had made another patient appointment with someone she said was 'really sick'. I guess sicker than a dying man, my husband. I don't think I've ever felt as disrespected or angry in my entire life. I've been through a lot in my life (more than some people, less than some) but the moment she walked out of the room, leaving us with so many unanswered questions and the worst news we could receive was devastating.

We can accept that my husband is seriously ill and is dying but my confidence in these doctors and the way this situation has been handled leaves me with many concerns. We will be getting a second opinion to allay these concerns and perhaps find any glimmer of hope in an accurate diagnosis and treatment plan that may prolong his life. Perhaps at some point there really are no answers when one has cancer.

I am particularly interested in getting any feedback from members who had success with alternative treatments to help with symptom management? Vitamin C therapy? Marijuana (legal where we live, both medically and recreationally), other options? Not knowing the cancer type I just want to be prepared to support my husband for as long as I can and provide him with the best quality of life he can have.

REPLY
@cindylb

Update on my husband and the multitude of tests and diagnosis hits and misses. This past Friday we met with his oncologist to discuss the final tests which were molecular and genetic tests that they hoped would give them a better idea of the type of cancer and treatment options. In the end they still do not have a definitive diagnosis. They are leaning to lung cancer but as of now it's actually a 'cancer of unknown primary'. It is Stage 4 and they are offering that no treatment options are actually workable. They feel that chemo would simply make him feel ill in the time he has left (months to a year) and that radiation and surgery are also off the table. Our consultation, where they told my husband that he is terminal, has only months to live and they can offer no real options except palliative, was to be about an hour. I wanted more information on clinical trials, alternative treatments, more definition on how long he might expect to live, what symptoms he will have and how we address those……well……the doctor walked out of the appointment after 25 minutes because she had made another patient appointment with someone she said was 'really sick'. I guess sicker than a dying man, my husband. I don't think I've ever felt as disrespected or angry in my entire life. I've been through a lot in my life (more than some people, less than some) but the moment she walked out of the room, leaving us with so many unanswered questions and the worst news we could receive was devastating.

We can accept that my husband is seriously ill and is dying but my confidence in these doctors and the way this situation has been handled leaves me with many concerns. We will be getting a second opinion to allay these concerns and perhaps find any glimmer of hope in an accurate diagnosis and treatment plan that may prolong his life. Perhaps at some point there really are no answers when one has cancer.

I am particularly interested in getting any feedback from members who had success with alternative treatments to help with symptom management? Vitamin C therapy? Marijuana (legal where we live, both medically and recreationally), other options? Not knowing the cancer type I just want to be prepared to support my husband for as long as I can and provide him with the best quality of life he can have.

Jump to this post

Cindy, I'm so very sorry. Sorry for what you and your husband have been faced with and so sorry for the manner in which it was delivered to both of you. On behalf of all medical institutes- I apologize. This would never be an easy discussion but the way it was presented to you- is certainly not the standard. I hope you follow through with a second opinion. No physician that cant answer all your questions is not the right one for you.

I think that you will find this thread helpful- https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/?utm_campaign=search. I hope that you will reach out to members and search for some answers. Hold tight until you get a diagnosis or find the primary.

Other links you might find helpful in reading are-
a thread for you from our Caregivers group- https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=3#comment-106739
Vitamin C for cancer treatment- https://connect.mayoclinic.org/discussion/vitamin-c-for-cancer-treatment/?pg=1#comment-60112

Please keep us updated and let us know how you are both doing. I will check back in with you and please let me know if there is anything else I can assist you in finding on Connect.

REPLY
Please sign in or register to post a reply.