Sole caretaker for 3b NSCLC

[Sarah85]

Hello, all.
 

My 75 year old mother was diagnosed with stage 3b NSCLC about a year ago with tumors in the right upper lobe and mediastinal lymph nodes. She went through chemo-radiation and after just 4 months of immunotherapy, it was discovered her tumors were growing despite the fact that the genetic testing indicated the type of immunotherapy she was on would be effective. 

I took her to a new oncology team and she is insisting on having surgery. Our original oncologist told us in no uncertain  terms that surgery could not be done on her advanced stage of cancer. Fast forward to 4 months of testing and we are scheduled to see a thoracic surgeon who has expressed willingness to do a lobectomy and lymph dissection. 

I’m logging on to this forum in hopes someone with a similar history can provide insight into his or her experience. Going through this surgery means I will have to leave my job and take care of my mom full time for at least 3-4 months. I am absolutely willing to do this, but I don’t know what to expect. I am an only child and there are no other family members to support her. 

Mom has moderate emphysema and was a pack a day smoker for 40 years. She has extreme issues with anesthesia and, in fact, has suffered aspiration pneumonia following each of her lung biopsies. I don’t want to crush my moms hope, but I cannot wrap my head around how this is a viable treatment option. The surgeon will undoubtedly express the risks and statistics, but up to this point, my mom has willfully ignored anything negative her team has told her. I’m positive this is a self preservation mechanism, but I am second guessing her ability to give true informed consent. 

Anyone been in a similar boat?

thank you!

[Tom Galli]

Sarah,

Many are in the boat. My first-line therapy was designed to shrink a large tumor to allow resection of my right lung. It did but then surgical problems and post-surgical problems nearly killed me. What finally worked was precision radiation; my treatment was SBRT.

You may want to arrange a consultation with a radiation oncologist to see if radiation can produce surgical results without surgical risk. Established anesthesia issues are a big hurdle that is best avoided.

Stay the course.

Tom

[Karen_L]

Sarah85,

I’m sorry to hear your mom—and you— are facing this. One thing she has going for her is her will— she certainly wants to kick this thing to the curb! 

Have the medical providers you’ve spoken with thus far been lung cancer specialists? I’m thinking particularly of the surgeon. Surgeons, in my observations, seem to feel their powers extend to “curing” people with lung cancer— perhaps he is being as optimistic as only a surgeon could be? 

I’d encourage you and your mom to ask the oncologist to bring the case to the tumor board of the center where she received treatment to review next steps. No tumor board? Then I think you are well within your rights to ask your mother to consult a lung cancer specialist in her particular biomarkers to review her case and make recommendations. 

You’ve also got a lot on the line in terms of *your* life in this situation. I worry sometimes that caregivers think they need to (must) make these kinds of sacrifices when it’s possible the actions might not be in everyone’s— including your own— best interests. And, perhaps you’d consider checking in with a counselor about your feelings about all this? The medical center may be able to make a referral to a social worker with oncology experience for a short-term consult. 

I encourage you to be deliberate in this part of the process. And, perhaps check in with the caregiver discussion board here to get their perspectives? 

Hang in,

Karen

[Sallysh]

My situation was a little different as I underwent chemo radiation that shrunk everything a lot.  My oncologist then wanted me to consider surgery. Radiation was high dose which makes surgery more difficult. I too saw a surgeon who was “willing”. To do the surgery. However the complications, especially because of the high dose radiation,  were daunting. I determined not to do the surgery and started immunotherapy.  The immunotherapy (durvalumab) has failed and in a mere three months the cancer has spread to many lymph nodes and my other lung and liver.  The surgery would not have prevented this. I also have mild copd so can identify with your mother.  I  would agree with The other comments and get more input from lung cancer specialists. 

[BridgetO]

Hi Sarah, Sometimes surgeries are done on stage 3 lung cancers but usually after the tumor has been shrunk by chemo. I do agree with Tom and Karen about getting a radiologist consult and also other opinions . 

Two other things: If you decide to take time off to care for your mom after surgery, 3 to 4 months might not be necessary. I had a lobectomy and lymph node removal by VATS (video assisted thoracic surgery) for a stage 1 lung adenocarcinoma at age 71 and my recovery was pretty fast. I was released from the hospital the day after surgery (with a chest tube still in) and was taking short walks outside the next day. I could have taken care of myself after 4 or 5 days with  two  exceptions :needing help changing dressings on my chest tube site until the tube came out in 10 days and being unable to lift anything heavy (over 15 pounds, I think.) Of course I didn't have the anesthesia issue your mom has had.  Nor did I have metastases in my mediastinal nodes, but 27 of them were removed and tested. But your mom's recovery might be shorter than you expect.

I especially agree with Karen about seeking some advice or help for yourself about whether taking the extended time off work  to be sole caregiver for your mom is in your, or her, best interests. If your mom has  surgery and needs long term caregiving, a social worker could possibly help your mom (and you) figure out other options.

I had some issues  with my  own mom over caregiving, so I know it can be hard to set limits. I, too, am an only child. I lived at a distance (several hours by air) from her, and there were no family members in her area that would provide much besides brief visits. My mom was a survivor of two advanced cancers, but the precipitating issue was that she broke her hip. I went down to be caregiver, or as I preferred to say, to get her back on her feet. Fortunately I had a lot of sick leave accrued at my job and my employer allowed me to use it for Family Medical Leave. So I took 12 weeks off. In the first several , it looked unclear that she was wanting to get back on her feet. She resisted her physical therapy and wanted to be waited on instead of doing what she could for herself. I sympathized and knew she had pain, but I also knew that the prognosis was poor for older people with broken hips, especially if they didn't get on their feet quickly. So I 'got tough" and told her that if she wanted to get to be able to care for herself I was there for her, but if not, she could decide to go to a nursing home. She did get more active in her own recovery and was able to be alone, with some housekeeping help, when I left in 12 weeks.  If I had not had the paid time off, I wouldn't have taken that much time. I couldn't have afforded to leave my job, and additionally, the 12 weeks of caregiving pushed me to my emotional limits. 

All my best to you and your mom, and be sure to take care of yourself, too.

[bibi bibi]

Hi Sarah:

I was 75 when they found my stage 3b Nsclc by accident as part of a health exam for an extended Thai visa. 
 

Because Covid was rampant in my part of Pennsylvania, I could not return to the USA for treatment. And so I had surgery and chemo in Thailand. 
 

My tumor was clear of other organs and blood vessels so they never told me I couldn’t have surgery. and in Thailand, they don’t have the use of pretreatments as we do in the USA.

I agree with the other postings and you should find help for your mom at  a certified lung cancer center which usually will be at a University Hospital. There is one easily found on google.

Your mom’s situation is very complex and I hope you can find assistance.