Hospice or treatment?

@artistrose , The genetic testing that @mamajite mentioned was beneficial for me too. My cancer was found to be driven by an ALK positive mutation. I started a targeted therapy (pills), and that has been responsible for clearing up the cancer in the lungs and the liver.
I'm happy to hear that you have an oncology appointment set up. Knowledge is important. Each of us has a different response and experience, but we can come together to support one another. Sending hugs.

Welcome @jsmcole31, Thanks for sharing your positive outlook, we can all use a reminder like that sometimes. How long ago were you diagnosed with lung cancer? Did you decide to have immunotherapy, or other treatments?

Hello Leticia @leticiah70, I'm glad that you've joined this discussion. It can be a weighty topic, but one that we all think about, and may wrestle with.
5 surgeries!? I feel for you, that's a lot to take on in just five years. I was also diagnosed just over five years ago but have been fortunate to avoid lung surgery.
What type of lung cancer do you have? Have you undergone treatments, other than the surgeries?

Thanks all to responding to my original post. Several mention immunotherapy. I’ve heard one treatment costs around $20 - $25 thousand and takes numerous treatments. How do you all afford that? Does insurance cover all or any of it? I’m on a Medicare Part C plan. How about chemo and radiation - are those even worth doing? I’m interested in further info before making any palliative decision. Also, please don’t feel I’m pessimistic or giving up. I see Palliative care as also a positive benefit as a former medical social worker.

@artistrose , Many of our treatments are very expensive. It's shocking isn't it? I have to assume that insurance covers most of the cost for many of us. The reality is that cost can come into play when deciding what the next steps are. The world of insurance is complicated. I wonder if a social worker at your oncology center may be able to link you with a business services specialist to help understand what you may be facing depending on the type of treatment options you have. Have you had a chance to speak with anyone there about it?

@lls8000 I see the oncologist in 3 weeks for the first time. I guess from there I'll talk with other folks. So, I guess I’m just in this limbo state right now.

@artistrose there is a lot of support for cancer patients, including financial. my mom participated in a clinical trial (for lymphoma) that her insurance didn't cover. her oncology team worked with the Lymphoma & Leukemia Society and they paid most of the cost for her. try not to worry too much before your appointment. one thing I did was make a list of questions I wanted to ask because it's easy to feel overwhelmed in the moment.

@mamajite Thanks. That’s a good idea about writing questions ahead of time.

@artistrose, you've gotten some excellent tips from fellow members living with lung cancer. I'd like to join the huddle and offer a couple of things to consider as you prepare for upcoming appointment with the oncologist.

First learn about palliative care vs hospice. They are related but different. Hospice is care at the end of life. Palliative care is available to you at any time after diagnosis. It is sometimes called symptom management care or comfort care. Palliative teams help keep you comfortable and keep the pain well managed and symptoms under control. These symptoms may be as a result of treatment side effects or, should you chose not to have treatment, as the disease progresses. Palliatice care can be offered along with treatment.

See this helpful diagram:
- Palliative care vs hospice care: What's the difference? https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/paliative-care-vs-hospice-care-whats-the-difference/

To the list that @mamajite suggested you start, I would add:
- Can I get a referral to palliative care?

As @lls8000 suggested, learn about the treatment options and their risks and benefits for YOU. Once you learn about potential side effects, you can decide whether these may be side effects you are willing to try to tolerate or if they would not be acceptable for your definition of quality of life.

So, to get you started I would questions like:
- What treatment options are available for me?
- What are the possible side effects?
- How long would you expect this treatment to extend life?
- How long will I be on treatment?
- If the side effects are too much, can I stop treatment? Or take a treatment holiday?
- Is the cancer in my liver and pancreas, cancer that has spread from my lungs? Will the same treatment help reduce the cancer cells everywhere?
- Would you recommend palliative care?

Now I have a question for you, @artistrose. What questions would you add? 🙂

@colleenyoung
Hi. Thanks for your response. I’m a retired medical social worker and have been a home health and also hospice social worker; so I’m familiar with the difference between palliative and hospice care. My doctor has already made a referral to palliative care but they haven’t called yet. I’m suspecting they’re waiting until I meet with the oncologist.
I like your questions and will note them for my meeting with the oncologist. I already know it’s lung cancer in my liver as I had a biopsy. My primary doc said from PET Scan my pancreas cancer is also from lung cancer.
I’ve been reading up on Immunotherapy, Targeted Therapy, Chemotherapy, and Radiation. What I was curious about is the experience of people who have already tried these therapies; more so, than what the doctor will tell me. There’s nothing like experience. I’m 71 and I’m not in the personal place of “life at all costs.” Hospice doesn’t scare me. Quality of life is very important to me. I understand everyone is different and everyone has different experiences. I’m looking to hear from patient experiences. I haven’t ruled out treatments, but I also may refuse them. I could go either way.