Hi I’m Qing, my mother is diagnosed with multi-focal lung cancer, non-smoker.

[Qing]

1 hour ago, LexieCat said:

In my case, the nodule was too small to biopsy (just under 1 cm). My pulmonologist and the surgeon both agreed that the CT scan was suspicious enough that even if a biopsy were negative, they would want to remove the nodule to be on the safe side. And a lobectomy is the safest for very early lung cancer, because you have the best shot at getting it all. 

In your mom's case, as Tom said, if the other nodules in the other lobes really are cancer, then the surgery in itself isn't likely to cure her, so there would be no point in doing it for that reason. But if the other reason makes sense (to obtain a good sample for testing), then it very well might be worth it, so she can get the treatment that's best matched to the specific kind of cancer. 

Good luck and be sure to keep us posted.

Thanks LexiCat, I feel I'm less scared for my mom on potential VATS surgery if it's the path with surgeon/pulmonologist. On your reply to Judy on "spicular shaped nodule", it rings a bell for me, because the Mayo radiologist also pointed out my mom has two strangely shaped nodules out of the 8 (one is "cystic/cavitary/vesicular shaped", 20 mm; one is also "ill-defined", 11mm)  

Will be sure to keep everyone here updated! 

[TJM]

FWIW... I also went straight to a lobectomy without a biopsy and my tumor was large (about lemon sized). My pulmonologist suggested that route BECAUSE it was large. It also had grown from a small nodule found more than a decade ago. Interestingly, the PET scan was inconclusive.

[LouT]

Qing,

I had a single nodule that was too small and in a difficult position to biopsy without risk so I too went to a lobectomy where they confirmed the malignancy while I was on the table and removed my right lower-lobe.  You've already gotten such great counsel and input that the only thing I can add is that prior to doing my lobectomy a pulmonologist performed a full lung function test on me to see if I was capable of doing well after a lobectomy and I suspect that they should do the same for your mother.

I'm glad that you found us and are sending best wishes for you and your Mom.

Lou

[Qing]

Hi everyone, thank you so much for your suggestions! Please let me update on my mother. She had a liquid biopsy and it shows an atypical EGFR mutation. She's doing okay otherwise, no treatment yet, but Tagrisso is recommended by the oncologist. It's quite surprising to me how fast technology has progressed that can detect such a mutation in her blood. She is very hesitant to get a lung tissue biopsy, because she concerns whether it would be accurate & represent all nodules in her lung (she has total of nodules in both lungs).. I've been struggling to understand better here. Should I convince her to do a tissue biopsy, or just proceed to take the Tagrisso? Would anyone be able to share their thoughts or experiences? Thank you.

[Judy M2]

I've seen presentations where the oncologists' preference is to forgo the tissue biopsy if a liquid biopsy is conclusive (some are not). So with an EGFR mutation, Tagrisso is the right targeted therapy drug. Side effects may be bothersome in the beginning but usually become more manageable. You may want to join the LUNGevity Tagrisso (osimertinib) Patients & Caregivers Group on Facebook, where we share experiences and tips. Best of luck to your mother.

[Tom Galli]

Qing,

Should you convince your mom to do a tissue biopsy? Liquid biopsies are becoming more accurate but everything I've read suggests the inaccuracy stems from low tumor presence, and therefore few cancer cells in the blood stream to detect. If doctors think all of your mom's 8 tumors are metastatic, then there ought to be plenty of detectable evidence in the blood. However, I don't think it is your job to do the convincing.

Your mom's doctor made a diagnosis sufficient enough to prescribe Tagrisso. The target for this medication when used in first line (first treatment) therapy is adenocarcinoma EGFR with exon 19 deletions or exon 21 (L858R) substitution mutations as detected by an FDA approved biopsy. I think it would be a real stretch for a physician to order a line of treatment if unsure of the type of cancer to treat. Liquid biopsies are FDA approved for specific applications. If it were me, I'd feel pretty comfortable about a diagnosis.

There is always uncertainty. But, I'd believe the probability of misdiagnosis is pretty low.

Stay the course.

Tom

[Qing]

1 hour ago, Judy M2 said:

I've seen presentations where the oncologists' preference is to forgo the tissue biopsy if a liquid biopsy is conclusive (some are not). So with an EGFR mutation, Tagrisso is the right targeted therapy drug. Side effects may be bothersome in the beginning but usually become more manageable. You may want to join the LUNGevity Tagrisso (osimertinib) Patients & Caregivers Group on Facebook, where we share experiences and tips. Best of luck to your mother.

Thank you very much Judy for the information! I’ll also look up the Tagrisso Facebook group, didn’t realize there’s a group! Would be very helpful.

[Qing]

21 minutes ago, Tom Galli said:

Qing,

Should you convince your mom to do a tissue biopsy? Liquid biopsies are becoming more accurate but everything I've read suggests the inaccuracy stems from low tumor presence, and therefore few cancer cells in the blood stream to detect. If doctors think all of your mom's 8 tumors are metastatic, then there ought to be plenty of detectable evidence in the blood. However, I don't think it is your job to do the convincing.

Your mom's doctor made a diagnosis sufficient enough to prescribe Tagrisso. The target for this medication when used in first line (first treatment) therapy is adenocarcinoma EGFR with exon 19 deletions or exon 21 (L858R) substitution mutations as detected by an FDA approved biopsy. I think it would be a real stretch for a physician to order a line of treatment if unsure of the type of cancer to treat. Liquid biopsies are FDA approved for specific applications. If it were me, I'd feel pretty comfortable about a diagnosis.

There is always uncertainty. But, I'd believe the probability of misdiagnosis is pretty low.

Stay the course.

Tom

Thank you so much Tom! The liquid biopsy shows EGFR Exon19 V742I. The   Oncologist said mom should take the Tagrisso within a week. But the nurse on his team called us that day, and asked why we haven’t done the tissue biopsy yet, she said the oncologist forgot we didn’t take tissue biopsy, and it’s unsure if my mom has cancer or not. So it was a quite strange. But I think I agree, should stay the course on Tagrisso. The CT shows the tumors are growing (but not very fast) in the past 4 years. It’s first time we see the power of liquid biopsy. 
Thank you again.

[LouT]

Qing,

Thanks for the update.  It is good to hear that the doctors have determined what is going on and the treatment.  I believe Judy's suggestion is a good one to connect with the Lungevity Tagrisso group on Facebook.  You'll find plenty of support there specific to your mother's treatment.  Of course you can always come back here for any other support you need.

Lou