Hello everyone, this is my first time posting although I have been a lurker for a year. My 66 year old dad with a history of smoking ( quit 18 years ago) was diagnosed with stage 4 adenocarcinoma of the lung last summer. The biopsy tissue was tested for mutations and we assumed all was negative as the treatment wasn't changed and a platinum doublet was started and when I asked the PA "since the two common mutations are negative will you test for the rare ones" she said they do that later in the cancer process. Well the doctor retested the sample a month ago for the more rare mutations using the same tissue that we already had and it came back positive for EGFR mutation My question is did the doctor miss something a year ago or does it happen where the same tissue from a biopsy will yield different results. Last week I did ask for a copy of the results of the testing done last year and sure enough it says EGFR positive. I'm a bit upset as I'm sure you can understand
conflicting pathology reports regarding EGFR mutation - 1270465
michele1223
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Reply # - July 13, 2015, 08:43 AM
Hi Michele,
Hi Michele,
Anything is possible but the EGFR tests have become pretty standardized and there's much less misses of that specific mutation than there once was. There is a subset of EGFR mutation that doesn't respond to the TKIs. Is it possible the type of mutation is one that doesn't respond well to TKIs?
We have a blog post on the subject. Dr West starts the explanation, "We’ve learned that there are an array of EGFR mutations, and that the two most common ones, an exon 19 deletion or an L858R substitution on exon 21 (an exon is a specific expressed portion of a gene), each somewhere around 40-45% of the EGFR mutations seen, are actually the ones consistently associated with a dramatic and often long-lasting response to EGFR TKIs. In contrast, the other 10-12% of EGFR mutations, most commonly on exon 18 or exon 20, are a heterogeneous group with a less clear benefit from EGFR TKIs. " http://cancergrace.org/lung/2014/06/22/egfr-exon-19-vs-exon-21-mutn/
I'm very sorry your dad is going through this. Of course mistakes can be devastating. I hope he does well for a long time. Let us know if this was helpful.
Janine
Reply # - July 13, 2015, 05:15 PM
The long part of the story is
The long part of the story is the doctor came In all "yay good news he is EGFR positive" and i said oh from this most recent time you tested? And he said yes and I said is it unusual to test negative than positive and he said I don't know. Well at that point I asked for all the pathology reports and sure enough the first one done I 2015 was positive and the one done now was negative. I'm at a lost and don't understand. It's probably to late but I'd like others thoughts
Reply # - July 14, 2015, 08:54 AM
Hi michele,
Hi michele,
I'm sorry about the confusion. It is possible for one sample to test positive for an activating EGFR mutation while another tests negative. Not all lung cancers are heterogeneous - they may have an EGFR-mutated component and one that is not. I can't explain why you were told it was negative on the first test, but that is certainly something for which I'd seek an explanation from your dad's doctor (not his PA). Whether the explanation satisfies you or not, it might also be good to take those reports to another doctor for a second opinion, preferably at a teaching hospital affiliated with a good medical school.
Good luck, and let us know what you find out.
JimC
Forum moderator
Reply # - July 14, 2015, 06:43 PM
I will defiantly demand
I will defiantly demand answers by the way I'm a Tramatic Brain Injury nurse. I'm losing hope and stamina. My dad has really take a bad turn in a short period of time which makes me think Lepto. our new neurologist is requesting a brain and spinal cord MRI. Hope it shows good news. Or at the very least some news at all. is it usual for WBR to have such symptoms o balance issues and lack of basic memory as well as incontinence.
Reply # - July 15, 2015, 08:49 PM
Michele
Michele
Balance issues, lack of memory and incontinence are all symptoms of LMD (Lepto), but could also be associated with WBR. Has his gait changed?
I would suggest a spinal tap/puncture rather than MRI to determine if symptoms are associated with LMD.
Bob
Reply # - July 15, 2015, 09:52 PM
Balance is definitely an
Balance is definitely an issue he has fallen at least once a day and has recently been incontinent. We took him and he was admitted to the hospital today. He doesn't remember his own name. I've never seen him this bad. I know there is such a thing as radiation induced encephalopathy and although that's awful I know as a TBI nurse people come out of it. I keep telling every doctor I see what my thoughts are. They are testing for spinal compression whatever!!! My dad keeps saying numbers over and over, I'm beginning to think its like the show lost and I'm in purgatory.
Reply # - July 16, 2015, 08:56 AM
Michele,
Michele,
I just wanted to drop a note to say how sorry I am you're going through this. I hope your dad is feeling alright and as wrong as this sounds that this is worse on you than him.
Janine
Reply # - July 16, 2015, 10:55 AM
Michele
Michele
I sure hope you get to the bottom of this as quickly as possible and I know how deeply concerned you are for your dad. I'm not sure what a spinal compression is but I do know that a spinal tap is about the only definitive way to determine if he has LMD.
If he does have LMD and he is EGFR positive you can trey pulse dosing Tarceva. You may get some relief for a brief time. I would also suggest looking into Hospice if it is determined to be LMD because you will really struggle to care for him by yourself.
Good luck and be sure to look after yourself.
Bob4Beth
Reply # - July 21, 2015, 10:05 PM
Hello all! I just wanted to
Hello all! I just wanted to let everyone know what happened. The doctors found a DVT in the right calf and bilateral lower lobe PE's. The MRI to the brain showed improvement of the mets there as well as marked atrophy of the cerebellum and white matter. The spine MRI showed bone metastasis in every single visualized vertabrae. He went from walking and feeding himself and doing basic ADL's to not even having the initiation to want to do anything. His heart rate was in the 30's and. Blood pressure would tank at any attempt to sit up. There was so much going on there so fast that our focus turned to comfort. We brought my dad home Sunday and he's been here since. No one could have (in my opinion) ethically treated his cancer with so many comorbidities. He is basically bed bound. I wish he could have been cognitively able to make the choice himself but we feel comfortable that this is what he would choose. It's funny the doctor was talking about lovenox and whether or not to continue it and as lucid as can be turned to the doctor and said no invasive procedures. That was a true blessing for us to hear. Thank you for being here as a resource for everyone. It really is an amazing site
Reply # - July 22, 2015, 09:16 AM
Hi Michele,
Hi Michele,
I am sorry to hear of these latest developments, but I think you should feel assured that you and your family are making the right (albeit difficult) choices. As my wife's doctor told us at the time of her diagnosis, the two goals of stage IV lung cancer treatment are to prolong life and improve quality of life. At some point the priority shifts from the first to the second of these goals, and it seems clear that your dad is at that point and that further anti-cancer treatment would only cause more harm than benefit.
My thoughts are with you and your family, with hopes for peace and comfort.
JimC
Forum moderator