Biomarker Testing and Waiting for Results-What was your experience?

[LUNGevityKristin]

Biomarker testing results can take up to 4 weeks or longer for the provider and patient to receive. Ideally, treatment should not begin until you receive ALL biomarker testing results so that your doctor has a complete picture of your lung cancer, and can together develop the most appropriate care/treatment plan. However, for some people experiencing severe symptoms, starting treatment immediately may be necessary.

LUNGevity would like to know about your experience waiting for your complete comprehensive biomarker testing results. What was that like? How long did you wait? What did your doctor tell you while you were waiting? Did you start on a treatment while you were waiting?

[LUNGevityKristin]

Bumping this up!  Any thoughts or insight would be appreciated!

[Deb W]

It took about 4 weeks for the biomarker results of the original tumor to come in.  However, I received chemotherapy and immunotherapy immediately.  I was also waiting for the results of a biopsy done on  two lymph nodes (found later).   It turned out that I had the MET mutation.  I believe MET was discovered when the lymph node biopsy came back, but I'm not certain.  I moved my care as the 2nd opinion oncologist is the one who discovered the MET mutation.  It had been in my medical record but overlooked (again not sure if it was from the original tumor or lymph node biopsy).  If MET had been discovered immediately, I believe I would have been put on Trabecta.

[GaryG]

I did not have all the testing done because they did not have enough tissue. I think my oncologist was only concerned about ALK and/or EGFR (not sure) in order to choose a path. When those come negative he decided to go right away with the triplet. I was told by few knowledgeable posters here that I should have all the tests done not only once but twice or three times, but that was after the fact and would have taken 4 to 6 weeks.  One should remind the oncologists/radiologists to take enough tissue for many tests  the first time around since they can't figure that out on their own.  

Live and learn (has a nice ring to it when you are a cancer patient). 

[GaryG]

I wish we had a blog specifically for new patients to guide them on "DOs & DON'Ts". I know the home page has a lot of useful instructions  but it can be daunting for a newly diagnosed person.

[Deb W]

Also, I had the Foundations 1 test done and a blood biopsy.  The blood biopsy did not show the MET mutation.

[Rower Michelle]

When I was discharged from Hospital A, I was told 48 hours later I had, "adenoma carcinoma, lung primary type".  I really didn't know what the implications of that was and certainly wasn't told about biomarker testing by the pulmonologist.  It took about a week for me to see an oncologist at the only NCI in my State.  Upon the first visit, the oncologist said I was EGFR, ROS1 negative and ALK indeterminate with zero PDL-1.  I had no idea what he was talking about, was still in shock but wrote it down.  When I asked about prognosis, it was grim, six months to live.  My only response was "what?!", which then changed to about 12 months.  I didn't like that answer either and still said "what?!" which then the doctor said with treatment maybe 24 months.  My husband was crushed, my sister was on a girls trip in Miami and I didn't dare tell my parents.   

I was asked to sign some paperwork accepting financial responsibility for up to $5600 for some type of special testing.  I remember thinking, well if we have to pay for this, it will have to come out of our savings account and I didn't hesitate to sign this waiver even though I didn't know what it was really for.  

With a Stage IV diagnosis, I wasn't sure that I wanted chemo with such a grim prognosis.  I was very symptomatic, with trace plural effusion and a worsening cough.  I hadn't slept through the night in about a month, wasn't able to have a conversation either.  I had to write everything down on a pad to communicate.  Somehow, my doctor convinced me that I would feel better if I had a dose of the triplet while we waiting for "these tests" to come back which was expected to take up to four weeks.  I received a B-12 shot and started folic acid supplements and had to wait one week before starting the triplet.   The health insurance company denied the treatment plan stating "chemo was a matter of convenience".   So here I am fighting the insurance company noting the irony of having run health insurance appeals in previous role. 

Two weeks after my initial cancer diagnosis, I  had one dose of the triplet and  a messy port installation the next day.  My symptoms did not improve, the cough worsened and I started opiates. Evidently I was allergic to something in the chemo and part of my face turned purple.   I broke a rib from the incessant coughing fits.   It was a waiting game at this point, but wasn't sure what we were waiting for. 

Three weeks after my first visit with the oncologist, we received a call in the late afternoon asking if we could come in to see the oncologist before office hours the next day.  It was something like 7:30am.  We were not told why we needed to come in person, however, we figured at this point the news couldn't possibly get any worse.  I was scheduled for a second dose of the triplet later in the week which I was dreading because I developed an infection from the messy port install.  

When we sat down with the doctor, he apologized for bringing us in so early.  He said my tests came back for the ALK mutation.  His face is consistently expressionless.  I had to ask, is that good news or bad news.  His response is still me today, "its great news".  My next question was how does this change my prognosis- he said we were now talking about years instead of months.   

The insurance company made a rare move and approved targeted therapy that day.  I picked up the huge bottle from the hospital pharmacy and it sat on my kitchen counter for three days until my nurse chemo teaching visit.    When we arrived for the appointment the nurse educator, she had never prescribed the therapy and we were in uncharted territory.   I had found a number of sources via Dr Google and had more information than she did.  

I didn't hesitate to take the first dose of targeted therapy that evening, almost five weeks after receiving this diagnosis.  Within the hour my cough disappeared, that was 23 months ago.  

I wish the medical team had done a better job of explaining what biomarker testing was all about.  It could have saved us so much grief.  When the biomarker testing was denied by the health insurance company I requested  medical records for the appeal.   It was only then that I discovered my oncologist strongly suspected I had the ALK mutation yet he didn't say a word about it to us.   Played it very close to the vest.  I was mad for only a few seconds because in further reading, I could see the doctor was just as destroyed as we were.   

The health insurance appeals process was terrible, I exhausted the entire appeal process, with the final determination having been made by a board certified INTERNAL MEDICINE physician.   Evidently, "there was no evidence of a mutation" and the tests "were not medically necessary".   I don't think the physician reviewer read past the first note.  

Foundation One called me and offered a "wonderful patient discount" and asked for payment of $3500.  I told them to get lost, I wasn't paying them a dime.  Never heard from them again so to this day I don't know if the testing ever got paid for. 

Waiting four weeks for biomarker testing in my case was a horrible experience,  I can only hope that in the future the process can be expedited.  

 

[Judy M2]

Wow, Michelle what a rough time you had! 

I had my bronchoscopy on 10/31/19 and I met with my medical oncologist on 11/11/19 and got the tissue biopsy results, including being positive for the EGFR mutation, which my oncologist was "happy" about (he is a very expressive person). At the time I didn't really understand and had a lot of scary information to absorb. I went through 6 weeks of chemo and radiation, and about midway through, my oncologist discussed the plan for after treatments. I am now on a targeted therapy with "continued positive treatment results". 

[Rower Michelle]

Thank you Judy.  I’m a poster child for comprehensive biomarker studies in the never smoker population, it was a hard way to lean there are two ALK tests.  The initial ALK FISH test wasn’t sensitive enough to detect since the Foundation One results indicated a low tumor mutation burden.  I’m so grateful my oncologist kept digging.  

[GaryG]

On 10/2/2020 at 9:53 AM, Rower Michelle said:

 I had to ask, is that good news or bad news.  His response is still me today, "its great news".  My next question was how does this change my prognosis- he said we were now talking about years instead of months. 

 

Strange how there is no consistency at all among oncologists. When the I was told I had no mutation, I got visibly scared and shaken up because the oncologist assured me  that there are plenty of avenues available beside target therapy'. Then he explained how I will be on the triplet for 4 cycles then put on a maintenance plan without Carboplatin for up to 2 or 3 years.  I was and still am very surprised by his confidence in the outcome since I was not a candidate for target therapy, surgery or radiation therapy. Hopefully he is right.

[LouT]

Wow! Michelle, I don't believe I ever read your full story before.  What an ordeal you experienced.  And the "moving prognosis" must have been hell.  Thank God you are the athlete and fighter that you are.  I was proud just reading how you handled situations that might have left many of us crushed, especially when added to the shock of cancer and a dire prognosis.

For my part I never realized I should ask for any type of testing.  I always figured that I had been a smoker for many years (having quit in 2003) and was a prime target for cancer as a result of that habit.  What I never thought about is that even a smoker might be more prone to cancer (I believe it hits 1 in 7 smokers) because of a mutation.  Now I wish I had undergone the testing.

I'm so glad you made it through because you're such a phenomenal help to so many, based on your experience and strength.

Lou

[Suzanna]

Adam is still waiting for his results to come in and we're on week 5. Initially, we decided to wait until the results came back to begin treatment, especially since the first 3 tumors we knew about were small. The oncologist was on board with this plan. However, when the PET scan showed a more significant spread than we thought, we made the decision to begin treatment right away. The oncologist also supported this plan with the new information. We are among the very, very fortunate to have good insurance, so we have not yet had some of the difficulties that other patients have faced with this route. 

[Sabacat]

We lost a week because my oncologist thought he could get the testing done on the fluid drained from my large pleural effusion. Surprise! No cancer cells in the fluid.  Because we were distant, it took another trip over to get the biopsy done and then several days for the in-house pathology before it was sent out.  That said, we got the Foundation One results in exactly two weeks.   Turned out I have no druggable mutations, but do have 40% PDL-1 and something else that makes it more likely that immunotherapy will be successful for me.  Oh, and a high tumor burden, which is supposedly a good thing although it doesn't sound like it.