NSLC IV - Stopping Treatment

[dab]

Hello,

My husband was diagnosed April 2019 with NSLC IV.  He has undergone Immunotherapy, Chemo and radiation.  The doctors says his cancer is stable.  The side effects are terrible and have impact his quality of life to the point he cannot do anything. He is thinking about stopping treatment. We are planning to speak with his oncologist.  Do anyone have any information on what will happen if he decides to stop treatment? We are not sure what to do. He wants to have the ability to spend time with family.

[Rower Michelle]

Hi dab

I’m very sorry about your husband’s diagnosis.  It’s a shame you have to be here.  Quality of life is very important when living with this disease, sometimes the medical team loses sight of this unintentionally. Go into the appointment armed with details and have a frank discussion with the oncologist about your husband’s concerns.  
 

Do yo know if there was biomarker testing done to determine the sub type of the cancer?  That can help drive the treatment plan. 
 

In this day there is no reason for someone to have side effects so severe it impacts the quality of life to the point of stopping treatment.  I would consider sending an email or calling the doctor to let them know you would like an extended appointment for a heart to heart discussion.  Have a very detailed list of all of the issues impacting hubby’s quality of life (no detail is too small).  There are a lot of options to explore before you get to the stopping treatment point.

The good news is that hubby’s cancer is stable so something is working (albeit at a great cost). Survival rates for Stage IV NSCLC have greatly improved in the last five years due to the introduction of maintenance type chemotherapies. Without treatment the disease will inevitably recur and progress.  
 

It might also be worth getting a second or third opinion.  Needless suffering is just not acceptable given all the tools available to make long term treatment possible.

Let us know (if you are comfortable) what some of the issues are so that we can help you come up with a solid list of questions to ask the oncologist. 
Michelle

 

[Curt]

Hello @dab.  I’m sorry your husband is going through this.  Deciding if/when to stop treatment is a difficult decision.  My father was diagnosed with Stage IV in February of 2012.   He went through chemo and radiation, immunotherapy was not available to him at that time.   Not knowing what was a symptom of the cancer and what was a side affect of the treatment was frustrating for him.  He was symptom free up until soon after he started treatment.  He too struggled with the side affects of treatment.  Michelle has pointed you in the right direction with having a very direct conversation with his doctors about the goals and their expectations for the treatments he is on.  What do they expect life expectancy and qualify of life to be like on them and the same if he’s not on them.  I found that doctors will often respond with things like everyone responds differently or we won’t know unless we try.   I have also found that if pushed a little harder and made to understand that you and your husband want the realistic, not default, answers they will give them.  

[Tom Galli]

Dab,

Welcome here.

From your post I understand your husband's had first line therapy, and that therapy has stopped progression of his lung cancer ("doctors say his cancer is stable"). However, I assume the therapy did not eliminate his tumors, and his first line treatment caused vicious side effects that your husband does not want repeated. You ask what will happen if he decides to stop treatment. Likely, his tumors will increase in size and new metastasis will occur. 

You are not sure what to do. Michelle introduced quality of life as an important factor while being treated with lung cancer, and I completely agree. Lung cancer treatment can be horrible to endure and when expected results don't materialize, considering future treatment becomes a tough decision.

Here is how I would approach your dilemma. I'd ask my doctors to be forthcoming in predicting the probability of success of any suggested treatment. Then, I'd ask careful questions about the side effects of suggested treatment. If the probability of success is low and the side effects are high, I'd choose hospice care and live out the balance of my life without pain and able to enjoy my time left. 

Stay the course.

Tom