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Newly diagnosed Lung cancer -trying to get to an accurate diagnosis?
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.
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Where was that Dr? That’s horrible. Can you possibly get a second opinion at Mayo Clinic?
So sorry you were treated like you were. But I’m not surprised. Small town doctors told me I had asthma and my cough was psychological. Then
Mayo properly diagnosed and treated me. I’m
not alone. There now are 1100 therapies and many for Stage 4. It’s worth a try isn’t it? So shocking I know. But never give up. Attitude is everything!
Big cyber hug!
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1 ReactionCindy-
I am so sorry to hear this!
Please don’t give up! There are new developments daily...
However, journies like your husband’s are not uncommon I’m afraid...we went through similar appointments with my wife for a period of some 18 months, before we finally gave up on them and (at the risk of sounding like a commercial) we took her to Mayo for treatment in May, 2015.
My wife’s carcinoma was surgically removed, and it subsequently metastasized.
However, after a molecular study, Mayo put her on a trial drug infusion for her HER2 mutation (commonly found in breast cancer patients). She has now been on the trial drug (infusions locally every 3 weeks) with minimal side effects for 16 months...and although she is “stage 4”, she enjoys playing golf and we even cruised last spring! Her cancer is still there, but the trial has slowed it-hopefully, stopped its progression.
Stay connected...and please get your husband to a major Clinic! We like Mayo, but of course there are others.
If you need help, please let me, Linda Wortman, or Colleen know...we are ALL committed to lung cancer awareness!
YOU CAN BEAT THIS!
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2 ReactionsThank you for all your replies. We appreciate the support. As much as I'd like to say, 'it's only us this is happening to', I know it's not and the support is so important.
I am new here and never heard of this site until I stumbled upon it last week. The sad part is I have been a Mayo patient since 2013. I am stage IV and had mets to my vertebre, 2 ribs and supposely my liver (which a biopsy proved I did not) but was refused Oligometastic surgery that could of cured me. A radiologist determined I was too far gone and I was given the 6-12 months death sentence. My oncologist sent me to another cancer hospital to try out for 2 trials that used immunotherapy. I flunked out of both after 2 lung biopsies and 2 brain MRI's. Everything came back "inconclusive". I went back to Mayo and did 9 months of a double chemo, did radiation to my hip/pelvic when another blob popped up on the CT scan and begged for immunotherapy, which had not yet been FDA approved. The immunotherapy is Nivolumab (Opdivo) and I have been on it since Sept 2015. All bone mets are gone, primary lung tumor gone and 1 lymph node has showed a tiny progression. When I asked about molecular testing, liquid biopsies, etc, I am told they do not offer it. Six months ago I got a staph infection, yeast infection from the antibiotics and then fungus. I started feeling horrible and complained for the 1st time since my diagnosis. Long story short, I finally was sent to a GI doctor and he set up a bunch of test. I suffered from horrible chest pain which feels like trapped gas, moves around in the chest cavity and goes through towards my back. I have had 2 ECG's, an endoscopy (lesions found), CT scan every 12 weeks (a hiatal hernia found), nuclear radiation ultrasound to see if my port is still good, breast ultrasound, nuclear bone scan and 2 echocardiograms. Went to a Cardiologist (after waiting for months to get in) and was told last week that I have Pericarditis (inflammation of the pericardium) which can be caused by an infection, fungus, bacteria, etc. I was thrilled to be diagnosed!! Now I received my last echocardiogram report that shows no pericarditis. They are still treating me with drugs and I will speak with them again this week. I just wanted you to know that there are others out here that go through the "falling through the cracks" at their facility. I get that horrible feeling that my doctor is so overwhelmed by other patients that she just doesn't have time for me. No one at my Mayo has had as many Opdivo infusions (at least 65) so they have no one to compare me with. Why have they not offered your husband immunotherapy??
Hello @seaspray! Welcome to Mayo Clinic Connect! Thank you for posting and connecting with members in this group.
You may be interested in reviewing and posting in this thread- https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/. You are obviously a fighter and I found your message inspiring and I believe others would benefit from reading your posts as well.
Were you diagnosed in 2013?
Yes, I was diagnosed in August of 2013. I will try to check out the link you provided later in the day. My time flys by and the days seem to be shorter!!