Stage IV NSCLC Adenocarcinoma of lung with focal sarcomatoid differentiation. - 1262879

triciam
Posts:5

Hi:

My husband was diagnosed with Stage IV NCSLC Adenocarcinoma of lung with focal sarcomatoid differentiation, T2a , N0, M1 to brain and right acetabulum, last month.

There have been a couple of mishaps with his file, like missing a MRI of the pelvis, which have left me questioning the treatment he is receiving.

We met with the chemotherapist on Tuesday, and learned that he did not order any testing on the tumour as my husband was a heavy smoker. Is this appropriate? All the documentation I have states that all NSCLC Adenocarcinmas should be tested at least for EGFR and possibly ALK.

When I questioned this I was told that I could have a complete DNA profile done in Boston. I am in Canada and I know my provincial health care covers testing of EGFR, but it needs to be requested by the oncologist. Should I be getting a second opinion? My husband is in excellant health, other than the cancer

If it is felt that the testing should be done, what markers would you should I test for? Or should I have the complete DNA profile of the tumour be done.

Thank you for your insight. You site has become my go to source of information. Keep up the great work.

Tricia

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JimC
Posts: 2753

Hi Tricia,

Especially in the recent past, many oncologists did not test for mutations when the patient had a significant smoking history, reasoning that the odds of finding a mutation in that patient population were very small. Experience has shown that there are more mutations among smokers than previously thought (but still a small percentage), so the trend is to order testing for all patients with lung adenocarcinomas. You can read a good panel discussion of this issue here: http://cancergrace.org/lung/files/2012/05/Molecular-Markers-SM-Pt-4-Pan…

At present the only two mutations which have approved drugs to target them are EGFR and EML4ALK, so many oncologists routinely test for only those two. A full DNA profile can uncover other mutations, but the question is what to do with that information? There are trials of drugs which seek to target such mutations, but since those drugs are as yet unproven, and your husband is just starting treatment, it would make sense to begin with standard, approved chemo agents (assuming the lack of and EGFR or EML4ALK mutation).

I am always a fan of a second opinion, especially at major decision points such as determination of initial treatment and subsequent changes in the treatment plan. You get a second set of eyes looking at your information, and you establish a relationship with another doctor with whom you can consult in the future.

JimC
Forum moderator

Dr West
Posts: 4735

The current standard of care is testing for EGFR and ALK in non-squamous cancers. As Jim noted, the probability of an "actionable" mutation is lower in patients who have a significant smoking history, but these mutations are still seen often enough in smokers (particularly prior smokers) that the general recommendation is to favor testing of non-squamous NSCLC tumors, regardless of smoking status. While there is a debatable role for broad testing for every mutation in the world, right now there is no proven benefit to doing whole genome sequencing. My leading concern is that it is more likely to lead to results you don't know what to do with than to lead to a clear answer of the best treatment, and/or it will lead to a vague suggestion to do an unproven, expensive treatment with potentially significant risk/side effects based on a loose premise of research.

Of course, it is always reasonable to seek a second opinion. If it corroborates the first opinion, you can feel more confident about that. Alternatively, you may get a new recommendation or two.

-Dr. West

triciam
Posts: 5

Thank you for your prompt answers.

I have a couple more questions:

Given that chemotherapy has started, is it still be optimal to have testing for at least EGFR and ALK be done? If my husband was positive for either, should his treatment be changed / modified or should this information only incorporated into the selection of a second or subsequent treatment line?

Thanks again.

Dr West
Posts: 4735

We'd generally recommend testing early on, even if chemo has been initiated. As for the question of whether to change treatment based on the results of mutation testing, that's an open and somewhat controversial question, but the majority of expers would favor continuing treatment with first line chemotherapy until progression is demonstrated, or at least a fixed number of courses and treatment to the point of diminishing returns, then transitioning to the molecularly-directed treatment if a person actually has a "driver mutation".

Good luck.

-Dr. West

triciam
Posts: 5

Thanks Dr West.

From what I can tell, I need to figure out how to get the tumour tested. I am Canadian so I think this will entail getting a second opinion from a doctor who is also willing to request the tests.

Our current chemo oncologist did tells us, that a complete DNA profile could be done by sending the tumour to Boston but it was very expensive. I do not know if this would be covered by either the provincial health care or my supplementary private health care provider. Could have this information on hand, potentially open more opportunities if a mutation being studied was revealed? Would you recommend getting the complete profile done or just testing for the mutations that have treatments available?

catdander
Posts:

The reason for testing can answer that question. If you want to know about treatment options test for those that have existing treatments, EGFR, ALK, and ROS1. Other tests like the complete DNA profile aren't necessary in that case. A complete DNA profile would probably not be covered by US insurance, perhaps it's a trial that is paid for by a company performing a trial.

Sometimes the order in which they are done is first, EGFR and ALK. ROS1 is still pretty rare and not always tested for. Dr. West said, common practice is to test for EGFR and ALK.

Perhaps a 2nd opinion at a teaching or research hospital will order the tests more readily.

Janine