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.

Hi @jhp, I can see you are very worried about your dad and want the very best for him. This seems to be happening all very fast and you have a lot of questions. You're asking good questions. I'm tagging fellow members with small cell lung cancer experience like @bluelagoon @olgamarie @besswillis @vlpr @alcott @mustangdee64 @tymish17 @daisy9460, who may be able to share their knowledge and tips.

It sounds like your dad's bone issues are of primary concern at the moment and they are addressing the pain first. Hopefully this will make your dad more comfortable.

Can you clarify – has it been definitely determined that he has small cell lung cancer?

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@colleenyoung

Hi @jhp, I can see you are very worried about your dad and want the very best for him. This seems to be happening all very fast and you have a lot of questions. You're asking good questions. I'm tagging fellow members with small cell lung cancer experience like @bluelagoon @olgamarie @besswillis @vlpr @alcott @mustangdee64 @tymish17 @daisy9460, who may be able to share their knowledge and tips.

It sounds like your dad's bone issues are of primary concern at the moment and they are addressing the pain first. Hopefully this will make your dad more comfortable.

Can you clarify – has it been definitely determined that he has small cell lung cancer?

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Thank you @colleenyoung I appreciate any advice I can get.

No, it is not definite since the biopsy has not happened yet. It was originally scheduled to be this week, but after the hospital transfer, the orthopedic specialist said they want to stabilize his neck with surgery first before proceeding with anything else. There is no communication regarding timeline for any lung biopsy or treatment after he transferred to the 2nd hospital. I'm just worried about the time this is wasting.

They have done all the scans CT, PET, MRI. It is definitely some sort of metastasized cancer, and the doctors all said this is stage four lung cancer and from their experience or opinion it is SCLC extensive. Of course, I hope that the biopsy will turn out otherwise. They also said in the extremely rare chance, it could be tuberculosis and other things but with actual cancer in his neck, I don't have much hope for that anymore.

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Hi my name is Dee and I have small cell in remission. First let me say I am very sorry your Dad is suffering this. You as well as whatever affects love one’s affects us too. You guys have really been through it. Without a confirmed biopsy how do they really know it’s cancer? The first thing after my mass was found was biopsy. Small cell spread quickly and most are diagnosed with Mets when it’s found. I was limited so I don’t have any bone metastasis experience. Do you live near a teaching hospital? I go there in Florida for my care. They usually have the latest treatment and equipment. If not can you find a hospital with cancer experience? This is also a rare cancer that needs a team familiar with it. I would request that biopsy. They may be thinking it’s already spread and if so ok but he will need some treatment soon if that’s the case. Many many prayers for you both. I was diagnosed limited in July 2021 and scan with MRI of brain CT chest abdomen and pelvis every 3 months. So far it’s good but 75% have a reoccurrence within 2 years so I’m waiting on the other shoe to drop.

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Thank you for taking the time to reply Dee. Many prayers for you as well. They are sure it's cancer because only tumors would fracture the bone like that and they have done all of the imaging. The biopsy would say what kind, but they sure are taking their time. It's agony because his English is limited so I've only been getting a trickle-down version of events (it took two days before I realized what was happening), and when I manage to speak to a nurse they say they don't know anything. He doesn't even have a doctor, so I don't know who to ask for. I don't think he's even spoken to an oncologist since being transferred to get orthopedic treatment. They told him the plan was ortho surgery then radiation later.

Another person from the support groups told me that treating this first is actually fine since it'll make him more comfortable and reduce the tumor burden. It's been ten days since diagnosis now and a lung biopsy still hasn't happened. Of course, I hope that this is one of those rare cases of misdiagnosis. If tomorrow I'm told that this is one of those House episode misdiagnoses, that he really does have TB and benign lesions or a more treatable kind of cancer, I'm willing to become one of those selfless people who do charity in warzones.

Yes, I am in vicinity to a top ten hospital for lung cancer. The admitting hospital didn't have the specialists for him and wanted to transfer him, but the top hospital couldn't take him right away. The admitting hospital made the call that his neck needed an orthopedic specialist asap and so they transferred him to the place he's at now which is unranked in lung cancer but well-ranked in orthopedics. The lung support group member also advised me that treatment is actually standardized everywhere, it's the same medication, but maybe get a treatment plan at a good hospital.

I've spent almost every waking moment since the diagnosis reading scientific papers and revisiting every cancer breakthrough news I've read in the past. 3% if it is SCLC extensive. Supplements, repurposed drugs, cancer vaccines…I've read them all, and I just hope that combined with conventional treatment, they will up his chances.

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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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Thank you @mustangdee64 for your advice. Thank you for your thoughts and prayers, and I will keep you in mine as well. Would you say the social worker is more for the medicaid insurance side? I think the insurance is actually fine, but I'd like to know their treatment plan or lack thereof.

I'll probably give the patient relations a call. The doctors don't visit everyday, so I can't even take a day off in hopes of running into one of them. They told us three days in a row for him to not eat and be ready for the orthopedic surgery only to inform him in the late afternoon each day nope, not today. And now they have informed us after convening, they think it's fine to let it be for now since it's not bothering him. It might heal on its own. They'll radiate another part first later this week and then even later the part they were going to do surgery on originally. The fact that that particular bone issue is not as serious as it first seemed is good news, but the waiting…the admitting hospital spent five days before deciding he needed this specialist they didn't have, it took two to transfer him, and now it's been four days since he has arrived at this hospital. Two weeks without any treatment, and still no word about doing any lung biospy, just a pending bone biopsy.

My dad tells me that these doctors probably want to stabilize him just enough so he can go home and come back to get treatments without taking up a hospital bed. I hope the patient advocate will be able to help answer these questions.

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@jhp

Thank you @mustangdee64 for your advice. Thank you for your thoughts and prayers, and I will keep you in mine as well. Would you say the social worker is more for the medicaid insurance side? I think the insurance is actually fine, but I'd like to know their treatment plan or lack thereof.

I'll probably give the patient relations a call. The doctors don't visit everyday, so I can't even take a day off in hopes of running into one of them. They told us three days in a row for him to not eat and be ready for the orthopedic surgery only to inform him in the late afternoon each day nope, not today. And now they have informed us after convening, they think it's fine to let it be for now since it's not bothering him. It might heal on its own. They'll radiate another part first later this week and then even later the part they were going to do surgery on originally. The fact that that particular bone issue is not as serious as it first seemed is good news, but the waiting…the admitting hospital spent five days before deciding he needed this specialist they didn't have, it took two to transfer him, and now it's been four days since he has arrived at this hospital. Two weeks without any treatment, and still no word about doing any lung biospy, just a pending bone biopsy.

My dad tells me that these doctors probably want to stabilize him just enough so he can go home and come back to get treatments without taking up a hospital bed. I hope the patient advocate will be able to help answer these questions.

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This is frustrating to read, I can’t imagine how frustrating it must be for you and your father. My non-medical opinion; if the orthos are saying he doesn’t need surgery, then he needs a qualified oncologist, now. His cancer is advanced, and the oncologist should do a biopsy to determine the type of cancer. Treatments for lung cancer have come a long way in recent years, without knowing for sure what’s driving the cancer, it can’t be properly treated. In your original post, you mentioned lesions throughout his body. Radiating one or two areas won’t stop the growth in other areas. He likely needs a system wide approach; being immunotherapy or chemotherapy.
Talking with the patient advocate is a good start. Unfortunately you and your father have been put in this position, just my opinion, but it seems like more is needed.
Best of luck to you, keep us posted. Lisa

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Thank you for your advice @lls8000

We'll have to put the plan on hold for a bit until I get more information. Apparently, the reason why nothing else was happening for so long after arriving at hospital 2 is because technically his insurance can only cover the orthopedic emergency he was transferred out of state for. After addressing his orthopedic issues, he's going to be moved back to the home state for anything else. They're saying radiation is in the plans and he'll be sent home soon early next week after the orthopedic surgery. I don't know what place will take over his care.

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I agree @lls8000, I can't imagine how furious you must be with this. I wonder how some people sleep at night. Is there a possible way to call his insurance company and upgrade his policy so that future things can happen more timely and smoothly?

Merry

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@jhp

Thank you for your advice @lls8000

We'll have to put the plan on hold for a bit until I get more information. Apparently, the reason why nothing else was happening for so long after arriving at hospital 2 is because technically his insurance can only cover the orthopedic emergency he was transferred out of state for. After addressing his orthopedic issues, he's going to be moved back to the home state for anything else. They're saying radiation is in the plans and he'll be sent home soon early next week after the orthopedic surgery. I don't know what place will take over his care.

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How are things going for your father? Has much progress been made and has the medical staff provided you with more information?

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