I have been reading the standards for staging and I am a little confused since I am not a oncologist. Here is my question:
My wife was diagnosed (via Bronchoscopyy and Mediastinoscopy) as NSCLC Adenocarcinoma Stage IV in April 2014 because she had 5 tumors in her RUL (the largest being 2.6cm X 2.3cm) and tested positive for cancer in some lymph nodes in her mediastinum area. In addition, she had a singlular ground glass opacity in her LUL.which measured 1.8cm X 1.4cm. Pathology (molecular panel) was tested and discovered that she was positive for EGFR G719A and S768I (compound mutation for Exons 18 and 20 respectively) in her RUL.
In April of this year, she had a segmentectomy in her LUL and the singular ground glass opacity was removed. The surgeon noted the following: the removed ground glass opacity was in fact adenocarcinoma. Lymph nodes in the LUL tested negative for cancer.
Pathology was sent to Duke's Pathology department for a Lung Hotspot Panel. The results came back in July with the following impression: KRAS (Exon 2) hotspot mutation detected. No EGFR, BRAF, or ERBB2 hotspot mutations were detected. TP53 (Exon 8) was detected.
My wife had a CT scan w/contrast on July 7, 2015 which showed only a small mass in her LUL at the intersection point where the seg was performed. This mass is declining rapidly and is almost non visible, while her RUL tumors show stable and her lymph nodes are not even visible.
I contend that my wife is either Stage IIIB or Stage IIIA because:
According to the National Cancer Institute, one of the prerequisite Stage IV conditions is: having tumor(s) in one lung that has spread to the other lung. This is not the case in my wife's condition! The once tumor in the LUL did not spread from the RUL to the LUL nor did the tumor from the LUL spread to RUL because there are indeed two separate and distinct cancers that happened either simultaneously or sequentially. Please, someone, confirm or refute my conclusion?
Reply # - July 16, 2015, 08:49 AM
Hi Phil and welcome to Grace.
Hi Phil and welcome to Grace. I'm sorry to know you through such awful circumstances.
The fact that nodes are involved outside the lung of the original/primary mass is a sign the cancer has spread into the lymph system; however because there are no signs of nodes with cancer in the other lung doesn't mean there isn't spread. Unfortunately there are so too few cut and dry facts about cancer we have to be careful not to make inferences (a normally healthy smart adult process).
One reason is that there might be node involvement but too small to pick up on a scan. It take about a billion cancer cells to form a spot as big as a pen point. Another possibility is that the nodes tested were the ones without the cancer or there were too few cancer cells and not picked up during pathology. There isn't always a trail of cancer.
Another reason is that it is 2 separate cancers and could be treated as such. This has shown to be quite rare but possible. One thing no one will argue with is that cancer can and will do anything.
A 2nd opinion may be helpful to understand better what is happening. This is an excellent post on the subject, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
Another line of reading we can offer is about staging, here is a good start, http://cancergrace.org/lung/tag/nsclc-staging/
http://cancergrace.org/lung/2013/12/06/n-stage-flight-risk/
I hope this is helpful. Please let us know of followup questions.
Janine
Reply # - July 16, 2015, 10:26 AM
I wouldn't get too hung up on
I wouldn't get too hung up on the stage as it's the treatment that makes the difference and the treatment will probably be the same. When I was first dx, I had a tumor in each the upper and lower right lobes and no lymph node involvement. Later on after treatment, my rad onc believed I actually had two stage I primary tumors. It didn't matter to me, as long as the treatment worked and mine did for a while. Then I had a recurrence which was called a local recurrence of stage IIIA. I had the surgery and chemo. Mine had not spread outside the original right lung. I would also go with the Duke pathology for mutations. Wishing her the best. Take care, Judy
Reply # - July 16, 2015, 12:21 PM
Thanks for the feedback guys
Thanks for the feedback guys :)
Reply # - December 7, 2022, 12:00 PM
Same EGFR G719A and S768I mutations in mom
Hi all - my mother has stage IV lung adenocarcinoma with a very rare EGFR exon 18 G719X + exon 20 S768i compound mutation. There is very little research on treatments for her compound mutation, so I put together a Facebook group in the hopes of finding other patients with this compound mutation so we can share information. Thank you very much! https://www.facebook.com/groups/1334801933942833/Hi philmul,
Thank you for sharing your post - I hope your wife is continuing to do very well on treatment. My mom has the same rare EGFR G719A and S768I compound mutation - she was on afatinib for 4 years since diagnosis, and her latest PET-CT is showing mild progression in her hilar lymph node, sternum, and ninth rib. We are waiting for biopsy results. We are wondering what treatments your wife has been on? This is a very rare compound mutation, so hoping we can exchange info on effective treatments. Thank you so much in advance and wishing you and your wife the best ~
Many thanks,
Beh368
I am here on behalf of my mom, an otherwise-healthy, never-smoker Chinese woman from Hong Kong who now lives in California. She was diagnosed at age 63 in Nov. 2018 with stage IV non-small cell lung cancer/adenocarcinoma, with a moderate-sized right pleural effusion and four masses in her right middle lobe/upper lobe/lower lung. Brain MRI and PET CT negative for metastases. NeoTYPE analysis of right pleural fluid showed the uncommon EGFR exon 18 and exon 20 compound mutation, G719S and S768I, in addition to SMAD4 (V354G). Guardant360 analysis of her blood showed EGFR G719S, EGFR S768I, and CTNNB1 S33F. She has been on Afatinib (Gilotrif) 30 mg daily starting Dec. 2018.
Because my mom's mutation is uncommon and it seems that not as much info is known about other medications besides Afatinib that may work well, I am eager to connect with other caregivers or patients who have the same compound mutation with the hope of sharing info/support as we continue to provide care. She has been on afatinib as first-line treatment for 4 years since December 2018. Other than a small nodule that popped up in her right lower lobe two years ago that was radiated, she has been stable and feeling great. However, her CEA has been rising significantly (from 27 in May 2021 to 461 in 11/2022) and finally, a PET-CT in 11/2022 showed that her right hilar lymph node is lighting up with SUV Max of 8.6. There is also mild hypermetabolism in her sternum (SUV Max 3.5) and right posterior ninth rib (SUV Max 4). Her brain MRI on 10/2022 was normal. Her PET-CT on 12/2021 was already showing mild hypermetabolism and an increase in size in two sclerotic lesions in her sternum, and I had been asking about radiating them last year - however, her oncologists said that it was not concerning at the time (one of them thought the SUV was insignificant, the other said if they were bone mets, they should not be radiated unless they are causing pain). I now wonder if we had radiated the sternal lesions last year, would it have prevented the extent of progression we are seeing now? Or was her sternum just the first place that the resistant cancer showed up, and progression was bound to show up elsewhere? She is planning to get a bronchoscopy/biopsy of her lymph node in 12/2022 and we'll see what mutations show up. Her second opinion oncologist at UC Davis said it would be good news if we see T790M, but based on the little research on patients with her rare compound mutation (exon 18 G719S + exon 20 S768I) + T790M, it seems that Tagrisso can sometimes work and sometimes it doesn't work at all. He said there are many things we can do and her progression seems to be mild right now so she can keep taking afatinib while we are waiting for her biopsy, but we need to be considering a change in systemic treatment. It's a shame since afatinib seems to be keeping the original nodules in her right lung stable. I was hoping that she could simply have her new spots radiated and continue staying on afatinib successfully. Her Foundation One blood biopsy showed EGFR S768I, SUFU L140fs*1, DNMT3A R484fs*8, bTMB 0 Muts/Mb. Her oncologist said he doesn't think the new findings of SUFU L140fs*1 and DNMT3A are driving her cancer progression. We were advised by integrative oncologist Dr. Michael Castro (Beverly Hills Cancer Center) last year to order Tempus xE for whole exome sequencing, then OmiCure for gene expression analysis and biosimulation via Cellworks using in silico computation biological modeling to create an in silico avatar of the cancer (he said this would "permit simulation of drug responsiveness with her unique disease network to stratify the most and least important abnormalities"). I'll need to see if her primary thoracic oncologist at UCSF will be on board - I'm guessing he will think it's not necessary to order whole exome sequencing but that it won't hurt if we are willing to pay for it. Issue is that the turnaround time for Tempus xE whole exome sequencing is 4-5 weeks (at least 2 weeks longer than a regular tissue biopsy) so hopefully that delay won't make a difference in her care?
Thanks a lot for reading - we would greatly appreciate any thoughts or advice from this group.
Reply # - December 8, 2022, 11:34 AM
Hi Beh and welcome to Grace…
Hi Beh and welcome to Grace. I'm sorry your mother appears to have progression. Once it has been determined the extent of the progression is there the possibility it will be treated as oligoprogression? It sounds like you've educated yourself well in the last 3/4 years about your mother's cancer.
We have our recent 2022 targeted therapies forum available online. The first on the playlist is the entire forum and the rest are broken down into topics. I hope you can find some useful info there.
You mother's case is rare and complicated with no obvious next directions. As long as afatinib is keeping some of the cancer at bay it's worth stayiing on perhaps with added chemo to address the progression which has good efficacy with these type tumors. But we really can't comment on obvious next steps because there aren't any. I imagine she is in good hands at UCSF especially with your advocacy. Are there clinical trials for which your mother is appropriate?
I noticed the facebook group address didn't link in the bio, I will move it to your signature in hopes that it will link there. If not anyone can copy/paste it. I hope you find others out there. That's the best thing about social media, even if someone is 1 in a 1000 there may be 100s of others like you looking to connect learn from oneanother.
Keep us posted and best of luck,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.