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SCLC Questions for Oncologist During Consult


Cathleen

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My mother was recently diagnosed with extensive SCLC as it spread outside of her lungs to her lymph nodes -but as of now has not reach any other organs. We are meeting with a 2nd oncologist next week and I would like to have some questions prepared for her as last time we met with the oncologist I was kind of in shock from the news. Here is her timeline and what we learned from her first consult that left us both feeling very helpless....

9/14/2021: Went for a routine bronchoscopy due to MAC lung disease (she usually goes every 6 months but was hospitalized due to what we thought was a COPD exacerbation in August so she received this in September). She was not expecting any findings as she didn't feel much different than when she last went on 12/31/2020 and had a clear biopsy. 

9/17/2021: received results of bronchoscopy and was informed that she had lung cancer 99.99% sure it was extensive small cell as there are no large masses and her lymph nodes tested positive. 

9/27/21: went for PET skull  - thigh (but not brain)

9/30/21: Met with oncologist for consult who stated the following:

  • activity between lungs, outside of lungs, behind vertebrae, be sternum, and most activity in right lobe
  • No activity further down - liver ok 
  • Needs MRI of brain to ensure it did not spread to brain (scheduled for Friday 10/8) - she did experience severe head pain following her PET scan for about 24-48 hours and had blood in her mucus from her nose
  • Confirmed diagnosis as extensive small cell lung cancer stating it is aggressive, incurable, and terminal
  • Plan of treatment: Chemo and Immunotherapy - 1 cycle every 3 weeks (21 days) for 4 cycles  
    • Chemo Drugs: Carboplatin and Etoposide 
    • Immunotherapy: Tecentriq 
    • Day 1: Receive all 3 infusions 
    • Day 2: Etoposide
    • Day 3: Etoposide and Neulasta (patch to help WBC come up)
    • Will get anti-nausea and Decadron with infusion 
    • Once treatment is completed (if she can tolerate it) will get a PET scan to see if it is controlled 
    • If controlled - Immunotherapy continued as long as possible or can tolerate 
    • If activity found in brain - consolidative radiation may be needed
  • Prognosis
    • 6-9 months if she can tolerate treatment. Although Dr. has 1 patient that is on year 3 of maintenance and that is "unheard of" and he specified he was in better overall health than my mom. 
    • Recommended palliative care

Needless to say we were pretty shocked at the prognosis and referral for palliative care since she did not have any "new symptoms" and this was discovered through a routine procedure. This is not her first experience with cancer as she beat stage 4 breast cancer in 2008/2009 and Stage 1 bladder cancer last September 2020. However, this is a concern because her breast cancer treatment has obviously weakened her health and was told specifically her bone marrow which is likely to cause complications with Chemo. She also has COPD, CHF and MAC Lung Disease she had a STEMI ("widow makers" heart attack) in 2014 which weakened her heart. She has been told by ALL of her MANY doctors that she is a walking miracle and we are praying that this can be another miraculous story to tell. 

I am feeling somewhat hopeless/helpless if I'm being 110% honest. I obviously do not express this to her and stay strong and help motivate. I'm also feeling burnt out in general with health conditions and feel like I'm at a brick wall  and cannot think of questions I should be asking for the life of me. 

With that being said, if you were in our shoes what are some questions you may have for the 2nd oncologist? Any guidance/feedback/support/words or stories of hope is so very appreciated. ❤️ 

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Cathleen,

I'm very sorry to learn of your mother's diagnosis. Any small cell diagnosis is a hard row to hoe; with your mom's complications it is a harder and longer row. 

First a clarification on palliative care. Many confuse this with hospice but it is supportive care designed to deal with pain and discomfort from treatments or side effects. Here is additional information on this form of care.

Your mom is receiving the standard of care for small cell lung cancer with one important component--combination chemotherapy that includes immunotherapy. Immunotherapy is a game changer in lung cancer treatment and outcomes. Here is more information on small cell lung cancer (SCLC) and its treatment methods.

I understand your hopelessness. As a lung cancer survivor, I am well acquainted with the feeling. Looking back, I now completely understand the strain of my disease on my wife who was (is) my long suffering caregiver. Here is some information from our foundation that addresses caregiver fatigue. Motivation is the tough right thing to engage in. I believe attitude towards treatment and outcomes was vital in my long treatment experience. I've thought a lot about hope over the years. Here are my thoughts about its importance for both patients and caregivers.

None of us can answer two fundamental questions about life: What is it like to be born and what is it like to die. As a lung cancer patient when diagnosed, I was consumed by trying to learn how much time I had left. My fear of death and intense focus on its timing led to my missing many life experiences during treatment. I didn't realize that treatment often provides a life extension, and that life is worthy of living not worrying about the timing of the extension. So, here are my suggestions for you.

Take time to take care of yourself. Deliberately back away from the brick wall. You'll need agility and space to mentally maneuver and brick wall proximity won't allow either. Realize you can only support; you cannot determine or influence outcomes. Focus on support, on making things easier for your mother, on assisting her during treatment, and on helping her to enjoy her life. For me, joy did not appear magically. It was always available. I needed to be in the framework to recognize it. My wife's care and support allowed me that opportunity. She pointed out the little joy opportunities I was missing, helped me recognize them, and enjoy them. 

If I were in your shoes, what would be my questions for a second medical oncology consultation? I'd focus on what is the next treatment. Your mom is receiving the standard of care for extensive stage SCLC and I am hopeful for a good outcome. But, I would also be looking down the road for the next treatment opportunity. I'd ask about clinical trials your mom might qualify for after her first line treatment. But, I would be hoping for a good outcome from her combination therapy.

Stay the course.

Tom

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I'm sorry to hear of your mom's diagnosis.  There is a very comprehensive section of the LUNGevity website with questions to ask your doctor.  You can find it here: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/what-to-ask-your-doctor and even print the pages and bring them with you.  Tom's questions about clinical trial and next treatment lines are good ones.  

Here are also the support services we offer for patients and loved ones. If you want to talk or listen, please join one of our many virtual meetups.  They are so great for connecting. https://www.lungevity.org/for-patients-caregivers/support-services

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  • 1 month later...

Honestly, the waiting at first is the absolute worst. Once you have a plan it will get better, well it did for me.  Please stop googling…….for your own sanity and it will always be wrong. There'll be lots of advice and support on here when you need it and the blogs can be useful to.  good luck with the results.

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