Caring for my 59 y/o mom, 1 year post-lobectomy

[wendybird]

Hi all - I wanted to say hello and how wonderful finding Lungevity and this forum have been. So many inspiring and supportive posts on here...I wish I found this forum last year when we were taking my mom through her initial diagnosis, surgery and post-op care!

Our story is that urgent care doctors found a suspicious ground glass opacity in my mom's lung as an incidental finding during an abdominal CT scan last March (2022)...her doctors followed it and when it appeared to grow a few months later, she got a PET scan and was diagnosed with adenocarcinoma in June. She had a lobectomy in August at Brigham and Women's/Dana Farber (luckily, my parents live near Boston), and post surgery she was confirmed to have Stage 1A2 adenocarcinoma, pT1b, pN0, predominantly acinar. The total tumor size inclusive of invasive and lepidic components was 2.2cm, and invasive component was 1.8cm. She's set up with an oncologist at Dana Farber, and has had CT scans every 4 months after surgery (and an annual brain MRI). We also got biomarker testing on the tumor as part of a Dana Farber clinical trial, and learned that it was EGFR-mutated (though we're still trying to get the full report to find out the subtype).

My mom is doing well - she recovered from surgery pretty quickly and we got clean scan results a few weeks ago that marked 1 year since diagnosis. I am incredibly grateful for the care she's received and the incidental finding that allowed us to catch the tumor at stage 1. However, I regularly struggle with anxiety due to recurrence risk. Her oncologist did not feel that post-surgery immunotherapy was appropriate for stage 1a2, and now it feels like we're just sitting through "scanxiety" for the years to come. Her oncologist originally cited that her recurrence risk was about 20%, and told us not to read too much into older clinical research because staging requirements changed in recent years (stage 1a is now more strictly measured, so older DFS/recurrence stats referring to this stage are not applicable). However, this recurrence stat was shared with us before we got her tumor tissue genetically tested.

A few questions I have are: Does anyone know if EGFR mutations are associated with a higher risk of recurrence? Is having 4-month interval scans in the first couple years normal (or is her doctor more concerned due to her genetic type)? Do all recurrences automatically classify as stage IV?

And perhaps more importantly - any advice on how to have hope and not live in fear? My parents are in Boston and my husband and I live further away...I've been trying to visit more, plan more family vacations, and will also be taking my mom on a mother/daughter trip later this year. However, I regularly feel guilt and anxiety at at not being much closer in case a recurrence is around the corner and fear that I'll regret not spending more time with her. I'm 30, and am so scared that she won't have a chance to know my future kids and be around for more milestones. Thanks for taking time to read; it's so helpful just to write all of this out and read your stories too.

[Tom Galli]

Wendybird,

Welcome here.

To your questions, do EGFR mutations have a higher risk of recurrence? I wouldn't know for certain, but I've not read anything on adenocarcinoma mutations and risk of recurrence. All types of lung cancer have a high risk of recurrence compared to other forms of cancer. That is one reason our disease is so deadly. A 4-month scan interval is common for early-stage disease treated with surgery. The objective of frequent scans is to catch a recurrence early. I've not read anything about genetic types and post-treatment scanning frequency.

Do all recurrences automatically classify as Stage IV? Staging is an abbreviated way of explaining the extent of the disease at diagnosis. After diagnosis, we worry about recurrence, not one's stage after recurrence. Lung cancer staging is an important consideration at initial diagnosis. It points to the possibility of surgery as a treatment method. Multifocal disease (multiple tumors throughout the body) is generally not treated with surgery. The reason is the disease is already metastasizing and surgery won't stop metastatic activity. This requires systemic treatment: chemotherapy, and or chemotherapy and radiation (chemoradiation). Generally, lung cancer staging at I, II, or IIIA is evaluated for surgical treatment. There are exceptions.

Moreover, precision radiation (3D-CRT, IMRT and SBRT) is used, now more commonly, to treat multifocal (many tumors or nodules) disease alone or more typically as a combination therapy (chemoradiation) for late-stage (IIIB or IV) lung cancer. It is also used to treat single nodule or tumor recurrences and sometimes multifocal recurrent nodules or tumors.

Recurrence is a nightmare but we have effective ways of dealing with them now. The key is to catch recurrence early, hence frequent scans. Your mom will likely have 4-month scans for say 2 years, then the interval might be moved to twice a year. As a nearly 20-year survivor, I still get an annual scan. My doctor told me I'd have them for the rest of my life.

Your much more difficult questions are about hope and fear. I have opinions on these topics, and you can read my views here, here, here, and here. There is a long version on Amazon if you have the inclination.

Stay the course.

Tom

[Karen_L]

On 6/22/2023 at 8:01 AM, wendybird said:

any advice on how to have hope and not live in fear?

That’s the  big one. I recently heard a podcast about hope— behind a paywall, so I signed up for a 7day trial and then cancelled— and wrote about it here. 

I’ve found the further out from the initial treatment I get, the more I accept the disease as part of my life. The fear subsides when I shift my focus away from “what if______ “ [fill in the blank] to “what’s now?” because this moment is the only thing I’ve got for sure. Shifting the focus to the current day takes some practice, but it’s worth it. 

I’ve found the mental part of lung cancer to sometimes feel more challenging than the treatment itself. I see a counselor, which helps me keep my head on straight. 

Hang in, and keep us posted. 

Karen

[tgif i guess]

On 6/22/2023 at 10:01 AM, wendybird said:

...and am so scared that she won't have a chance to know my future kids and be around for more milestones.

i cannot come up with anything better than that.  nothing excites a mother more than the prospect of her grandchildren.  so get busy.

(sorry - had to say that)

the good news is monoclonal antibodies are there if she needs them - not sure why they would not give it to her anyway because i have had no problems with keytruda - the better news is that they are getting better every day (my chemo nurse said if we find the cure, it will be monoclonal antibodies)

i'd find a doctor that would run a cea every month or so - easy and cheap

it won't stop you from feeling guilty, but your Mom does not want her children feeling guilt because of her - try your best to honor that

 

[wendybird]

On 7/1/2023 at 6:08 PM, tgif i guess said:

the good news is monoclonal antibodies are there if she needs them - not sure why they would not give it to her anyway because i have had no problems with keytruda - the better news is that they are getting better every day (my chemo nurse said if we find the cure, it will be monoclonal antibodies)

i'd find a doctor that would run a cea every month or so - easy and cheap

it won't stop you from feeling guilty, but your Mom does not want her children feeling guilt because of her - try your best to honor that

Hi there - thanks for your response. I didn't know that monoclonal antibodies were used to treat lung cancer - is that the same as immunotherapy? I know that for her original tumor subtype (EGFR exon-19 deletion) there are immunotherapies, but she was stage 1A so wasn't offered Tagrisso.

What's a CEA? And does it offer better monitoring benefits than her scans every 4 months? I had assumed that her oncologist at Dana Farber had suggested the classic standard of care for a NED lung cancer survivor.

[LouT]

Hi,

I believe the mention of monoclonal antibodies is in reference to having Covid.  I had to take them and it turned the Covid around for me.  CEA stands for Cancerembryonic Antigen.  It is a test to indicate the potential presence of cancer more information on that can be found here on the Cleveland Clinic site.  CEA testing is usually done in addition to other types of testing, (i.e., CT Scan, Blood or Tissue Biopsy, etc.)  And scan frequency is usually decided by the Oncologist and can be as frequent as every Three Months to every Six Months.  As time goes by without recurrence the scans may move closer to being an annual occurrence. I hope this helps and please keep us updated as your mom progresses.

Lou

[BridgetO]

About monoclonal antibodies: Some types are used as targeted therapy for lung cancer. A medication name ending in "-mab"  is a monoclonal antibody, for instance, pembrolizumab (Keytruda). 

[tgif i guess]

i am taking chemo and immunotherapy so i have blood work twice every 3 weeks - the cea test is just another vial of blood and cheap - at diagnosis, my cea level was 55.8 but is now back to normal levels - its a way for the oncologist to monitor the effectiveness of my treatment

i have a pet scan every few months but its obviously more invasive and expensive 

i can watch my cea levels myself - i cannot tell much from looking at my pet scans so i rely on the test report for that