Hospice or treatment?

It’s been a month since original post. Here’s my update. Saw oncologist. Prognosis is 6 months w/o treatment, 6-18 mo with treatment. Not enough biopsy sample to test for biomarkers and I refused another biopsy, but agreed to blood test to check for biomarkers. Agreed to start chemo, which starts soon. I got referral to Palliative Care which I requested, which I can do alongside treatment. My primary goal is quality of life and even with treatment, that is my goal but with family I’ve agreed to above course of action for now. I’ve taken care of a lot of end of life details knowing that is there, whenever it is there-death. I’ve been journaling on Caring Bridge which has been immensely helpful and through that realized I have more support than I thought. (Side note-oncologist says pancreas may not have cancer-will be explored further; and cancer in liver is lung cancer and could respond to chemo-we’ll see).

@artistrose Regarding costs of treatments 1) There is the amount the institution "bills" the insurer for the procedure 2) There is the amount the insurer "approves" for the procedure and pays. That amount is far far less!!! I read a paper awhile back discussing this huge difference between charge and what is actually paid. No one knows why we do this in the US and where it came from ...just the way it is here. And why people with no healthcare insurance went bankrupt...because with no insurance you have to pay this "retail" price.
You mention you have a Part C Medicare plan - that means an insurance company has taken over and you must go to their provider network, and they must approve any treatment proposed. It would be wise to inform yourself now (call them) what are the requirements of your insurance provider, time for approval etc. for any treatment options

@vic83 Thanks for the info. I did review my policy last week. It was still hard to ferret out with all the terminology. Looks like chemo is covered, which I’m starting soon. The oncologist said they do have nurse navigators and social workers to help me understand any costs of treatments so I’ll probably utilize them if I start any other treatments like targeted therapy or immune therapy.

@artistrose I don't know how it works with a Medicare Advantage plan, but I have original Medicare and my providers are obligated to tell me if a service is not covered by Medicare or they bear the cost. The service provider has to tell me and offer me a document to sign that I accept the cost myself (Advanced Beneficiary Notice)

Thanks for the update @artistrose, It's nice to hear from you. These decisions are difficult, and there is rarely one clear answer. Hopefully the chemotherapy will be well managed for you. You can always change your mind on any decision that you make.
Did your team give you an idea of how long the biomarker blood test may take? Two weeks? My lung cancer type was identified through a liquid/blood biopsy. That led me to a targeted therapy which has been effective for me with manageable side effects (almost 6 years now).

Wow! That is encouraging! My doctor might not have wanted to get my hopes up. She led me to think the blood biopsy might not reveal anything. Sort of glass half empty. But again, maybe to not get my hopes up. I was told the test would take 21 working days. So I decided to start with the chemo in the meantime. I am in the category of being a female and non smoker which I understand is a category that can have a biomarker for targeted therapy for adenocarcinoma. I won't know until the results return. Have you had many side effects from your targeted therapy and what type?

I was diagnosed with Stage 3 squamous NSCLC and had chemo (6 treatments) and radiation (30 treatments) over 6 weeks in the fall of 2023. I then completed Imfimzi immunotherapy treatments in February 2025 (2/mo sessions for a year). I di have one case of pneumonitis in early 2024 that was successfully treated with prednisone.

I have experienced shortness of breath (SOB) fairly consistently, sometimes severe, over the last 9 moths or so, The only treatment that has been effective (multiple times ) is taking antibiotics (Doxycycline) and Prednisone (40mg phasing down to 10mg/day) over 12 days. I have been on these prescriptions at least 6 times over the last year.

To avoid using prednisone and antibiotics, I have tried nebulizer treatments, first using albuterol 2-3 times/ day and then adding a steroid (budesonide) 2/day but this results in only temporary relief (but better than my daily inhaler). I am also using my rescue inhaler too much.

I am still fairly active - golf, low-intensity gym , grandkids etc. - but the SOB is starting to affect my activities.

Has anyone experienced the same situation and come up with other solutions to their SOB with their pulmonologist? I am really trying to stay off prednisone, even of the dose is relatively low. Thank you.

@artistrose, The biomarker test can be a game changer where treatment is concerned. There is so much information pushed at you when you are first diagnosed, your doctor may not have wanted to overwhelm you with all or the potential scenarios. That's a common approach. There is much hope in all types of lung cancer treatment today. The identified mutation-based lung cancer's make up a smaller percentage of all lung cancers. Fingers crossed.
My lung cancer is stage IV, ALK positive. I'm still on my first treatment, alectinib. There are certainly side effects, but over the time that I've been on the medication I've learned to deal with them and it's manageable with other adjustments to my life. Please let me know what that test comes back. Hugs.

Yes, I’ll post again when the results come in. Thanks for the info.

Update since I posted first a month ago. Besides lung adenocarcinoma stage 4 spread to liver; had MRI and have at least 3 spots in brain. The oncologist had video visit with me yesterday. The positive was that my special blood test results also came in and I have EGFR mutation. I start Tagrisso today and chemo on March 5. She said we can hold off on brain radiation because of starting the Tagrisso. I’m hoping I can tolerate both. I was unhappy about my brain but happy about the Tagrisso, for now. I meet with Palliative Care doc on Monday as I want Palliative care alongside all this.