Recurrence generic testing : I was... - Lung Cancer Support

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Recurrence generic testing

Metafran
Metafran

I was wondering why after right middle lung lobectomy for early stage adenocarcinoma they did not do genetic testing? Seems it would be better to know what paths to take if it recurs. Wouldn’t it be better to know before and not have to wait for these results then? Should I feel short changed?

8 Replies
oldestnewest

How do you know they didn't? Are you in the UK? Pathology is usually (histopathology) on the resected tumour and either put through a gene panel (if the centre is taking part in the lung matrix trial) or tested for the common mutations for which there is a treatment agent available (EGFR, ALK, ROS1, and immunotherapy PDL1 status). Have you asked when this was done? I have a left upper lobectomy in Dec 2010 and did not have a diagnosis of cancer confirmed until almost a month later due to the delays in pathology (Xmas/new year and rareness of type) but was told I was not EGFR positive which was the only test done back then. I don't know what else was found but do know it went for testing/pathology so somewhere is the pathology report. I have recently requested a copy for my own curiosity. Pathology is a crucial part of the national optimum lung cancer pathway that is now part of NHS England process for lung cancer so as you say it is important to know what is in it to determine any follow on treatment is targeted if it can be. ask the question of your team and see what they say. good luck.

Metafran
Metafran in reply to JanetteR57

They said they only do that test if I get recurrence or mets show up. I get scans every 6 months with a watch and wait. I have the biopsy report it only says papillary stage 2 adenocarcinoma of the lung.

JanetteR57
JanetteR57 in reply to Metafran

Ok - as they are doing active vigilance and will retest if it recurs, as many cancers return in a different form from the original (especially if systemic anti-cancer therapies have been given such as chemo/radiotherapy), this makes sense. Evidence shows that in many cancers (most often with breast but also other tumours) that if it returns, it can be different molecularly so that is when they would need to know what to target with the best treatment available at the time. mine was also a type of adenocarcinoma. good luck.

Lovey1000
Lovey1000 in reply to JanetteR57

Anyone ever heard of KRAS mutation and is it bad?

JanetteR57
JanetteR57 in reply to Lovey1000

It's one of the known ones and for which there are some targeted agents so no, it's not bad. Some of the mutations known and for which there are targeted agents are EGFR, ALK and Ros1 and PDL1 testing is used for immunotherapy. good luck.

Denzie
DenzieModerator

No. Do not feel short changed. This is standard of care as set forth by the powers that be at the NCI and NCCN. It should be changed as they can tell you in advance for people who require chemo that certain chemotherapies will not work with a certain mutations. It could save millions.

They have made fixed slides of your cancer which by law they have to hold on to for at least 7 (10?) years. They should be able to get enough genetic information from that.

There is always the possibility of a different cancer developing or something in the cancers environment may cause it to mutate further. If you have progression you should insist on a new biopsy. Always!

Cancer is such a sneaky devil that i would expect it could mutate between now and recurrence anyway, but you can bet they have saved some of the tissue they biopsied.

Same here. May 22 I a middle right-lung lobectomy to remove adenocarcinoma, Stage 1. Two nodules in upper right lobe were unreachable. I don't think the malignant tissue was sent for biomarker / genetic testing; just scheduled me for PET/CT Sept 9.

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