no luck with biopsies - 1251417

lysabee
Posts:3

I was dx with stage IV adenocarcinoma Sept. 2011 with bone mets. I had a needle bx from my spine to confirm diagnosis, but no genetic mutation testing. I have had radiation on my spine, chemo (6 cycles of taxol, carbo, avastin) and avastin for maintenance since march. Latest PET shows 28% primary tumor growth. I had a needle bx on my primary (right hilar region) tumor in Sept. Neg for ALK but inconclusive for EGFR.
I switched to a different onc who ordered a mediastinoscopy to do extensive genetic testing. The thoracic surgeon says there are no longer affected lymph nodes in my mediastinum (according to recent PET), so he did a brochoscopy with no luck there either. He said another option could be to do an invasive procedure (collapsing the lung, major surgery) to get a piece of the primary tumor.
My onc is very involved in research and says more and more young, never-smoker, women are positive for the HER2 mutation so he really wants the testing done since there is a clinical trial starting for this soon. What options are available to me to get enough tissue for testing? The primary is apparently in a difficult place to access (hilar). My primary is now 2.5 x 2.7cm and I have several small lesions on my spine and rib which have had radiation and have low SUV activity. Thanks for your help.
Lysa

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Reply # - December 15, 2012, 02:50 PM

catdander
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Welcome Lysa, I'm so sorry you need to be here but know we can be very helpful in your sorting out these issues. For starters it's not a bad thing that you don't have enough cancer to find a good biopsy. My husband was put into the same situation when needing tissue just for his cancer diagnosis. Out of 2 core needle and one vats try there was no cancer captured for a diagnosis. He had a full open thoracotomy to get the tissue needed. With where the tumor was situated there was not way to even try and get all the cancer. It was very difficult to deal with the after affects of such a major surgery for a diagnosis that we knew 99.5% we were looking for.

So, while I don't have any better information for you to help with your decision making can sympathize.

I wonder if a question for you would be what other options are there other than her2 trials in your area. Plus tarceva and/or iressa are available without egfr testing in many parts of the world as second line treatment.

I will contact a doctor to comment on your inquiry about other biopsy options.

The very best of luck and don't hesitate to ask questions here.
Janine
forum moderator

P.S. We have a very large archive of very informative discussions on the subject of lung cancer. You can access by clicking the menus above "General" and "Focused" cancer info. and our search function works very well given specific search words and phrases though you may need to log off depending on the browser you're using. Here's a link to get you stated,
http://cancergrace.org/lung/2011/03/19/her2-by-m/
http://cancergrace.org/lung/2011/12/27/her2-mutations-small-numbers-are…
http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in…
And don't miss the links at the end of the blog/posts

Reply # - December 15, 2012, 03:47 PM

lysabee
Posts: 3

I guess I'm just annoyed that testing wasn't ordered by my first onc. Originally my tumor was 5.8 x 5.5cm which is quite large and there was activity in mediastinal and subclavian lymph nodes. now, they are smaller, thank God, but we are having trouble getting enough tissue anywhere. Tarceva is an option, just looking for more. The thoracic surgeon did mention a thoracotomy as an option, but I will be discussing it with my onc on Monday to see if the risks outweigh the benefits. Thanks for the links, I will check into them.
Lysa

Reply # - December 15, 2012, 04:39 PM

Dr West
Posts: 4735

At this point, I think it's important to note that Tarceva (erlotinib) is an appropriate consider whether there's an EGFR mutation or not. There's a greater probability for dramatic response if the cancer has an EGFR mutation, but Tarceva is still an established 2nd or 3rd line treatment even if there isn't an EGFR mutation. So there isn't a definite critical need for EGFR mutation with regard to standard, "off protocol" treatment options, even if it might be helpful just to know, or to potentially identify clinical trial options. And testing for HER2 is certainly an appealing option for a protocol, but at this time it's not a standard part of the work-up for lung cancer, as you likely already know.

With regard to "how to get tissue?", that's the challenging downside of our new focus on molecular marker testing. Unlike leukemia, where you only need to draw blood to access the tumor cells, sampling lung cancer cells is typically challenging, and especially after treatment (though it's a good thing if the cancer is a lot harder to find and access after treatment). This issue is also one of the reasons why I think it's helpful for patients to become knowledgeable as soon as possible, since it can be helpful to have patients know to ask about molecular testing early on, and/or to know the value of finding and working with an oncologist who is aware of the potential value of molecular testing.

The leading option for obtaining tissue from the hilum, near the center of the chest, is a bronchoscopy. If the surgeon can't access the tissue, perhaps an interventional pulmonologist can help. It's usually only a small subgroup of pulmonologists who are especially adept at getting tissue readily through endobronchial ultrasound-guided biopsies, but I suspect that would be the most fruitful avenue. The alternative is to try to get tissue when there's a more readily available target to go after, i.e., after the cancer has progressed.

Good luck.

-Dr. West

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