My sister was diagnosed with IMA lung cancer this July. It was found during the physical exam. She is 55 years old, otherwise very healthy and active, and has never smoked. Since the tumor was very big, 4.4 cm, the doctor scheduled surgery and removed the lower lobe of her right lung in mid-July and said it is stage 2A. The PET scan and the examination of the tumor tissue did not find any spread. But according to her doctor, since the tumor was so big, and the cancer sub type of "mucinous" is of especially high risk of possible recurrence, the 5 year survival rate is very low, I am very scared. I have been trying to find more information about this sub type of lung cancer IMA. But it does not seem to have many posts out there talking about this type. I wonder if it because it is indeed very rare or there is another name for it?
And what I am very interested in finding out is about the mucinous feature of this lung cancer type since my sister's doctor emphasized the word "mucinous" multiple times. He said if it was not mucinous, the perspective would be very different. Does the "mucinous" feature alone make the recurrence more likely and survival rate a lot lower than other type of lung cancer?
She is scheduled to see an oncologist this week. I assume the doctor may order chemo as adjuvant treatment. I will get the update after her appointment.
I am trying to learn as many medical terms about lung cancer as possible, but it is very hard to understand the research papers out there.
Any advice, treatment experiece and knowledge sharing will be greatly appreciated.
KatherineZ
Reply # - August 20, 2020, 04:16 PM
Hi Katherine, I'm very sorry
Hi Katherine,
I'm very sorry about your sister's diagnosis. I missed your post and am sorry it was so long before answering. Many people with IMA have a KRAS mutation which is a sign of poorer prognosis but EGFR mutations with T790M normally have a much better prognosis. Let me find out about how that relates to IMA. In the older posts, there is mention that egfr inhibitors are often not effective for IMA. That may not apply to tagrisso for t790m and that many IMA is KRAS positive.
Several years ago "IMA" was known as BAC along with several other now differently named rare NSCLC subtypes. You will find many articles here about IMA but will be mostly under the name BAC and specifically Mucinous and (for your sister's large tumor size) Multifocal. Dr. West the founder and president of GRACE is a leading expert in its management. His take home about BAC treatment always includes the biggest mistake made in treating BAC is overtreating because oncologists often treat it like its aggressive NSCLC cousins.
From an article in Clinical Advances in Hematology and Oncology (this article will be more technical and written for other oncologist but this quote is quite understandable) Dr. West states, "Specifically, it is worth first questioning whether any of the visible disease is progressing at a clinically significant pace. If clear progression is unlikely to occur over several months or longer, an appropriate option is attentive clinical and radiographic follow-up with no intervention. If significant progression is demonstrated in an isolated area, it is very reasonable to consider local therapy—whether surgery or radiation—in this area alone."
In other words, if there is no obvious progression you should watch carefully with CT scans every 3 or so months with no treatment. The idea is you need to keep treatment for when it's needed and don't waste it when nothing is happening or it's so slow that not treating is less harmful than treating. Many people live out a mostly normal life with treatments now and then when needed.
I'm leaving you with the following links. Dr. West teaches us to be our own patient advocates and an expert at writing direct, informative, and understandable pieces about lung cancer.
Note that some of these posts suggest EGFR mutations in mucinous BAC are often not benefited by EGFR inhibitors. This may be out of date. Today with at the top of the EGFR inhibitor list tagrisso may be quite valuable. I need to find that out.
Basics of BAC
defining-bronchioloalveolar-carcinoma-bac-one-end-spectrum
https://cancergrace.org/post/how-does-diagnosis-bac-shape-systemic-therapy-considerations-today
https://cancergrace.org/post/bac-no-more
https://cancergrace.org/post/bronchioloalveolar-carcinoma-bac-what-it
https://cancergrace.org/post/optimal-systemic-therapy-bronchioloalveolar-carcinoma-bac
Let us know how your sister moves forward in her treatment. Hopefully she will fit into the less is better treatment group.
All the Best,
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.
In reply to Hi Katherine, I'm very sorry by JanineT GRACE …
Reply # - August 27, 2020, 10:44 AM
Diagnosed with Invasive mucinous adenocarcinoma(IMA) lung cance
Hi Janine,
Thank you so much for all the detailed information. It is very educational. I have read Dr. West's about overtreating of BAC articles and the long list of comments. I will go over the links you provided and learn more. It is so hard to find definite answer and I feel so worried and lost because her tumored has been removed by surgery and there is no sign of spread which is good news. But the panicking factor is that there is so much uncertainty about recurrency risk and we are focusing on trying to do everything or anything if it helps to prevent that. But we cannot find answers and maybe is not medically and scientifically feasible to find answers yet.
Here is the update from my sister. Her genetic mutation testing result is KRAS G12D, not postive ALK nor EGFR. You were right about the KRAS in IMA patients. I have been researching online for KRAS G12D but unfortunately there seems no drug or trial available for this mutation currently. She had her first oncologist appointment last week, and the doctor decided not to do adjuvant treatment at this time. He just ordered CT scan in 3 months. But he did not have time to explain why he made that decision because there was a long line of patients waiting for him.
Maybe my sister's oncologist is following what Dr. West suggested treatment strategy? What I want to find out then is if the IMA type is one of the indolent cancer types? I am gathering materials to try to get a online 2nd opinion from Massachusetts General Hospital.
Thank you again, Janine.
KatherineZ
Reply # - August 27, 2020, 02:07 PM
Hi Katherine, Again, I'm not
Hi Katherine,
Again, I'm not sure why the prognosis was stated to be poor. In the world of lung cancer a 76% disease free survival (DFS) rate is excellent as is an overall survival rate (OS) of 87%. These figures come from a publication in the Journal of Thoracic Oncology. It looked at 81 people with a solitary IMA. That's not really enough of a sample to say these figures would reflect the same if there were more subjects but since it's not very common and the status is fairly new it's as good a perspective as we have.
I'm glad you're looking into a place like Mass Gen for a 2nd opinion, 2 heads are better than one. Even if you're not able to get one at Mass Gen they should be able to point you in the right direction.
A 3-month follow-up CT is typical for most lung cancer situations. The hope is that she will go for a year or so without any recurrence or other problems. At some point in or after a year, the space between CTs normally broadens to 6 months and then yearly.
The panicky feeling is unfortunately also typical of any lung cancer situation where you wait. Whether waiting on a treatment decision, scan results, the 5 year mark to pass; it's all anxiety producing. I'm sorry you have to go through that. But there's also a lot of hope that the cancer is actually gone. There hope that if it does return that it will be so indolent that it can be beaten back from time to time and she can go about your life as she plans. It's definitely a roller coaster of emotions. I hope your sister does very well.
Keep us posted :)
Best of hopes and 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.
In reply to Hi Katherine, Again, I'm not by JanineT GRACE …
Reply # - August 31, 2020, 09:36 PM
Diagnosed with Invasive mucinous adenocarcinoma(IMA) lung cance
Janine,
Thank you again for taking so much time providing me the insight on this IMA subtype. All this information and reasoning from your reply post gave me some comfort. " there's also a lot of hope that the cancer is actually gone. " That is what I have been praying for. I will update here after I get the 2nd opinion from MGH.
Katherine