My mom had her Right Upper Lung nodule ( found incidentally on CXR) biopsied on May 7 at MDAnd erson by the Pulmonologist. We met with the Med oncologist on May 23. On the first meeting she told us it was AdenoCA with one positive LN. Stage 3-4 . She had also a nodule on the e Left which was not biopsied but lighted up on PETScan. It might be 2 primaries he said., which makes it Stage 3 or it might be Mets which then make it Stage4.
He did not want to start treatment because he was still going to order molecular typing on the biopsied tissue . ( I did not realize the tissue biopsied 2 weeks prior was just sitting in the lab waiting for the Med Oncologist to put the order) . Anyhow he said he’s going to order a Liquid biopsy that might have a quicker turn around time.
It’s now exactly a month from the Endobronchial biopsy , and 2 weeks since we saw the Oncologist. We had a telephone visit yesterday and he tells us , the molecular test to look for mutations is not out yet. Thus we cannot start treatment .He tells us maybe next week the result will come out.
I cannot believe that the premiere cancer center in the world has a long turn around time . Or did they messed up something? I am getting worried.
Does anyone have any experience how long results of molecular test comes out after biopsy or if it is sent right away after the tissue was brought to the lab . Her Robotic Endobronchial biopsy and everything like scan, PET were all done at MD Anderson.
Any input appreciated.
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Balasang
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Sorry to hear about your Mum and the waiting can be such a distressing time. Our forum is UK based and everyone is welcome to be part of the community but we are unable to comment on any USA cancer centre , also they may have different protocols and guidelines from the UK.
Molecular testing in the UK often takes up to 4 weeks to get a result which as you know , if there are positive mutations present then this can offer new treatments such as Immunotherapies and Targeted therapies.
You may wish to post on some of the online forums within the USA where some health professionals may also be able to offer some guidance.
Hi, I'm in the US. I can confirm that it can take up to 4 weeks here as well. It's important because not every treatment works on every cancer. Having that information can save a patient from unnecessary side effects.
The Go2 Foundation for Lung Cancer is also a partner with healthunlocked. Please consider joining us there as well as participating here. There are some amazing patients and caregivers on both pages that freely share accurate information about their treatment and their cancer experience.
If you appreciate the information you receive there, consider visiting their website. They offer a free, downloadable information book about cancer. If you prefer they can mail you a hard copy, or you can read it on line. go2.org
hi, in my case, the biopsy was done in January & initial results came back with no mutations a month later.
I went to Anderson cancer clinic for further extensive testing, & had to wait 3 weeks for an appointment , and another 10 weeks for the results . Again no mutations or trials or treatment matches for immuno or targetted therapies.
These are top private clinics in Madrid, so from my experience, waiting for 5 months is not unusual
Hope this helps. It is frustrating, as I was counting on some kind of match (any??) for next steps and a plan b for when chemo stops working. (in my case nothing available) so be prepared for this also.
In the meantime anything else is worth trying. No gluten , dairy or sugar diet or full keto diet?
Thanks ohayei , and hope all is well with you . My moms liquid biopsy came negative too for targetable mutation . Our hopes are dampened by this but still awaiting the biomarker from the lung biopsy which they say takes longer.
They already scheduled her for concurrent chemo and proton therapy in the next 2 weeks. Though we are still hopeful the tissue biopsy will come out EGFR positive so she can be on a pill rather than infusion . She is Stage3A .
Sorry to read of your frustration at the long waits for molecular tests. Sadly waiting is a key component of the lung cancer journey - wherever that takes place usually - whether the wait for imaging, then biopsy then the results of those, then seeing the consultant.... etc etc. Having been diagnosed in Jan 2011 when the only targeted treatment available and then only for EGFR was on clinical trials, it was still a waiting game of almost a month after I'd had an open lobectomy to find out what it was and any further treatment that might be needed in the UK. I did not test positive for EGFR so that was the end of that. In the intervening years, so much progress has been made in research and new treatments introduced for a whole raft of mutations as well as the introduction of immunotherapy which have considerably changed the treatment and outcomes for patients.
As others have said, it's not only important to ensure the patient gets the most appropriate treatment but research evidence has shown that giving the wrong treatment to patients can results in worse outcomes. Unlike other cancers who may get a standard chemotherapy or radiotherapy treatment, lung cancers have proven they respond differently to different treatment approaches and often combination of treatments especially once spread beyond the lung.
Learning how to cope with the waits (which continue along with survival) is essential for the patient, relatives and friends - as well meaning questions about results or how/when the treatment may start can't always be answered by the patient and can feel like pressure that they're powerless to do anything about. Even if you kick up a fuss, nag, the process is the process...... but well worth the wait to get onto the most appropriate and effective treatment in most cases. Not only may it be 2 primaries but they may be slightly different types hence the need for testing and getting the results before starting treatment. Although our brains think every day, minute or hour the cancer cells are running riot through our body, it's not the case and the wait for the best treatment is usually worth it.
Personally I found distraction helped me - keeping busy, doing other things, immersing myself in other tasks - whatever she enjoys may help distract her mind. Hang on in there - good luck to you and your mum.
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