semone12
Posts:42
Hi. We have an open lung biopsy scheduled for my mom (aged 75, Adeno, Stage 4). The purpose of the procedure is to collect tissue for biomarker testing. While doctors consider her fit for the procedure and say that it is 'manageable risk', I'm nervous about the surgery. They are not able to do VATS due to the Pleurodesis that has been done earlier. I'm wondering if it's better to explore the option of biomarker testing via a blood test (though I believe it's not as comprehensive). Please help me figure out the risk - benefit so I can help my mom make an informed decision. Thank you.
Forums
Reply # - December 29, 2016, 02:09 PM
Hi Semone,
Hi Semone,
I'm glad you asked. This is a subject close to my heart because of my husband's experience. He wasn't able to get a diagnosable biopsy and had to have an open thoracotomy for diagnosis (and the tumor wasn't resectable). I'm sure it's partly to blame for his ongoing symptoms. So I have a few thoughts on the subject.
First, there are certainly blood biopsy (aka liquid biopsy) tests available for finding mutations. They aren't yet as sensitive/accurate as tumor tissue testing but if the test shows positive for a mutation it's a true positive though sometimes there are false negatives. They aren't widely used yet in the U.S. but a far cry better than surgery.
An open thoracotomy is one of if not the most invasive surgeries done. There is a chance though small that it will cause ongoing pain symptoms from nerve damage known as post thoracotomy syndrome. Many surgeons do this surgery including general surgeons, cardiothoracic surgeons, and dedicated thoracic surgeons. If you search around our site you will see that every time (or at least most of the time) one of our oncologists mentions thoracotomy it is with the caveat that a "dedicated" thoracic surgeon should perform it. It's all these surgeons do and are the surgeons most likely able to perform it without causing the long lasting difficult symptoms of post thoracic syndrome or at the very least provide a decent recovery time.
One of the most important questions when deciding on treatment or procedures for someone with stage IV nsclc is will it prolong life and/or increase quality of life.
It's easy enough to ask for a liquid biopsy or get a 2nd opinion from a large research/teaching hospital.
Here are a couple of links that will help, http://cancergrace.org/lung/tag/liquid-biopsy/
http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…
I hope your mom can find a way around the surgery. Let us know how it works out.
All best,
Janine
Reply # - December 29, 2016, 02:11 PM
I just realized I didn't ask
I just realized I didn't ask and only assumed the biopsy was needed for mutation testing.
Reply # - December 29, 2016, 04:06 PM
Hi Janine, thank you so much
Hi Janine, thank you so much for your detailed note. Yes. The only reason to do the lung biopsy is to be able to do biomarker testing. Sounds like you are in favor of the liquid biopsy route.
Reply # - December 29, 2016, 10:19 PM
Yes I would insist on the
Yes I would insist on the blood test and likely not accept that type surgery as an option. It's important to weigh the benefit with the cost of any procedure and this surgery is one of the most invasive.
If you've watched the first 3 videos in the first link (the first one is long and very informative the others are much shorter and worth the watch) you'll note that these lung cancer specialists are excited about the possibility of not having to do core needle biopsies for mutation testing much less extreme surgery. Please do look into what's involved with the surgery itself before moving into it without a 2nd opinion or using other options. Surgery for genetic testing is certainly not routine. Other options include a standard first line chemo which is what she would end up doing if there's no mutation found after surgery. After first line chemo and possibly a break she would be able to try the EGFR inhibitor tarceva whether she's got the mutation or not.
If there were a possibility of cure there is a higher degree of benefit to weigh against such a surgery but your mom has other options for treatment before moving to surgery. Remember after surgery she will have treatment. Treatment after surgery is adding insult to injury and a very difficult road even for those who are hoping for a cure. Dr. Weiss put it best (keep in mind this was written before there were mostly no other treatment other than chemo but the sentiment stands for any tx), "Every cancer therapy has two purposes: to improve duration of life, and to improve quality of life. Every other measure of chemotherapy success, such as response rate or progression-free-survival, is a surrogate to these two true goals. I am using the broken record as my pseudo-apology for repeating this mantra repeatedly on GRACE, to my colleagues, and in my mind every time I make a treatment decision." http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…
Janine
Reply # - December 30, 2016, 02:06 AM
Thank you so much Janine! I
Thank you so much Janine! I'm so very grateful for the details and insight that you have shared. It is super helpful!
For background, my mom was diagnosed with Adeno, Stage 4 in March 2014. She had 6 cycles of chemo with Carboplatin & Alimta. This was followed by nearly 2 years of Alimta maintenance and a chemo break (3-4 months). The CT scan following the break showed mild progression and she started Tarceva but soon found it intolerable. She's back on Alimta pending CT scan & biomarker testing. Her performance status is very good.
We will try the liquid biopsy route as plan A. Thank you again!
Semone
Reply # - December 30, 2016, 06:12 PM
Thanks Semone for the
Thanks Semone for the background. If your mom was very sensitive to tarceva it could be that she is EGFR+ and could try a smaller dose. There are examples our faculty have written about and members who have reported taking as little as 25 mg/day. Most oncologists lower dosage from 150 mg standard dose to 100 and go from there. Too, if your mom is EGFR+ she's extremely unlikely to have another actionable mutation. Though there's a trial or 2 testing drugs that target her2 gene. Some of these people have been egfr I believe.
It would be a most appropriate plan to try tarceva at a lower dose so not to give up on a possibly effective and tolerable treatment.
I look forward to hearing how things work out.
Janine
Reply # - December 30, 2016, 09:43 PM
Thank you Janine! You are a
Thank you Janine! You are a fountain of knowledge!
My mom was EGFR negative when we tested (about 3 years ago) but mutations can change over time. We hope to have a more current picture with the biomarker testing.
I'll loop back once we have results. Thank you so much!
Semone