Small Cell Lung Cancer with Bone Metastases: What next?

Posted by jhp @jhp, Dec 11, 2022

I'm JH, adult child of a patient. I still can't really believe that this is happening. My dad (60s) had been in fine health before these two months except for a 15+ year leg peripheral neuropathy issue. He was a smoker before quitting over 15 years ago. No breathing problems whatsoever, not even right now.

He likes to nod off while watching tv, so we thought he had just injured his neck somehow about 2 months ago. He actually had a yearly checkup about three weeks ago where he did bloodwork. They assured him he was fine, except his blood sugar was slightly high and should be controlled through diet.

It wasn't until last week when he started needing to take pain meds for his neck and leg at night that he went to the hospital where we got the news that according to their experience, this is SCLC extensive or very rarely it could be tuberculosis + other things. They found lesions on his kidney, pancreas, brain, spleen, leg, and neck. His neck problem turned out to be a fracture from a mass growing there. They said where his leg met the pelvis was brittle maybe as a result of the lesion or not. According to what I understand, they've done all the scans CT, PET, MRI, but they just haven't done a lung biopsy.

It's been a week now, and he was just transferred to a different hospital out of state since they needed a specialist for his neck. I've been spending every waking moment besides work trying to research. I have so many questions, but I don't know where to ask.

At his original hospital, he was scheduled to get a lung biopsy this week, but after getting transferred because they didn't have an orthopedic specialist there, the specialist at the 2nd hospital said they're going to first do an orthopedic surgery to support the neck first then radiation. Does anyone have any experience with bone metastases? Will doing orthopedic surgery first and then radiation later cause cells to migrate or generally delay treatment time if they want him to recover before beginning anything?

There is no word about when the lung biopsy is being done now or any lung treatment. How much harm is being caused by not doing the lung biopsy asap but rather after the surgery and radiation to the neck and leg? The results seem to take 1-2 weeks to come out and that seems like wasted time.

He is on medicaid. Do we need to ask for biomarker testing specifically? Do they just not offer it if your insurance doesn't cover or will they tell you about it and ask if you want to pay. Even if it has to be paid out of pocket, I'd pay.

The original transfer option involved two hospitals. The hospital he is at right now has well-ranked orthopedic specialists and according to US News their radiation equipment is very good. They have a partnership with MD Anderson but that doesn't mean they have access to the same clinical trials. For lung treatment, would it be better to try to get into ranked hospital (the other original choice) if they do not have spots open right away (they have a top 10 ranked lung center and the most cutting edge equipment/techniques) or would it be best to go with a decent place that can take him first? Is there any way to access clinical trials at all hospitals? This current hospital is unranked in lung cancer. Will moving to a ranked hospital give him a better chance?

Any help or advice is much appreciated.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@mustangdee64

Don’t google stats they are outdated. I am a member of a group on Facebook for only small cell lung and caregivers. I see many there extensive still alive 4 years or more so don’t give up. I am keeping you in my thoughts and prayers. The nurses aren’t allowed to tell you anything, I’m a nurse myself so I know. Ask for the patient advocate and tell them your concerns then ask for the social worker. Good luck it’s a hard road to navigate by yourself. 🤗

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I just found this. I have small cell lung cancer. I was able to have surgery to remove the mass and had my lower right lung lobe removed in Sept. 2024. I then went through 4 rounds of preventative chemo. Fast forward to now, March 2024. I had a followup head MRI and a small spot was found on my brain. I am scheduled to have one round of radiation soon. They believe it can be removed in one session. I am interested in your Facebook page for those who have small cell lung cancer. I will appreciate any advice you can offer. This has been quite a journey. Thank you in advance, Geri

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@gerilynn

I just found this. I have small cell lung cancer. I was able to have surgery to remove the mass and had my lower right lung lobe removed in Sept. 2024. I then went through 4 rounds of preventative chemo. Fast forward to now, March 2024. I had a followup head MRI and a small spot was found on my brain. I am scheduled to have one round of radiation soon. They believe it can be removed in one session. I am interested in your Facebook page for those who have small cell lung cancer. I will appreciate any advice you can offer. This has been quite a journey. Thank you in advance, Geri

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Hi Geri (@gerilynn), Welcome to Mayo Connect, I'm glad you stumbled upon us. So sorry that you are facing another treatment after your surgery. It's great that you are continued o be monitored, and that the spot in the brain is still small. It sounds like the doctors are hopeful that this radiation treatment will be minimal and successful. Was your MRI a generally scheduled follow up, or were you experiencing any symptoms?

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This coming Tuesday March 19, the Go2 Foundation will be presenting a YouTube program on the latest in SCLC. There will be an opportunity to ask the small cell specialist questions. He can't give advice on your cancer but he can point you in a direction. It's at 5:30p Pacific time, 8:30p Eastern time and it's called the Lung Cancer Livingroom. If you can't make it, they will be recording.

If you would be interested in an in-person Small Cell Summit for patients and caregivers LiveLung is sponsoring their second annual. It will be held in Raleigh NC. There are grants available to pay for transportation and lodging.
https://livelung.org/small-cell-summit/

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@mustangdee64

Don’t google stats they are outdated. I am a member of a group on Facebook for only small cell lung and caregivers. I see many there extensive still alive 4 years or more so don’t give up. I am keeping you in my thoughts and prayers. The nurses aren’t allowed to tell you anything, I’m a nurse myself so I know. Ask for the patient advocate and tell them your concerns then ask for the social worker. Good luck it’s a hard road to navigate by yourself. 🤗

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Hi! Thanks for writing this. i have extensive sclc and am wondering about the fb support group you mentioned. Thank you!

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@mitchmurphy7

Hi! Thanks for writing this. i have extensive sclc and am wondering about the fb support group you mentioned. Thank you!

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@jerilynn I hope I am addressing the correct person. I also stumbled on the sclc comments. I was able to go to facebook and search facebook for sclc and sclc cancer and there are a few active sclc pages I found. I have asked to join and am “pending”. Hope this will help you find the pages. If not reply back and I will give more detailed help.
Luck to you!
Pam

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