Need some suggestions: Making treatment decisions for lung cancer

Posted by thetwoofus @thetwoofus, Aug 30 5:20am

This is our 1st post. The two of us are in this together. She's 75 and has lung cancer, I'm her George and she's my Gracie and I don't know what I would do without her. She's 7 years into it and doing extremely well. You'd never know there was anything wrong. But now they peeled a cancerous lump off her carotid artery. The doctors don't know exactly what it is but they say it's cancer. They seem to be headed towards chemo and radiation to the neck as a follow up treatment. She's 75, 5' 2" and only 102 lbs. We're not sure what her odds would be for getting though this at that weight and age. I guess my question would be … are those treatments survivable at that age and weight level? Is there a weight level that treatments should not be attempted? The radiation treatment will be in her neck next to the carotid artery.
I also have another question. We would like a recommendation as to a good doctor or center in Colorado Springs or Denver that specializes in radiation to the neck and any other recommendations that would help. Thank you so much.

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

@thetwoofus: Welcome to Connect. What a wonderful introduction. I remember George and Gracie. What a wonderful pair the two of you must be! I'm sad to hear of your wife's cancer. I too have lung cancer and some cancers can really give us a run for our money after giving us a tease of a rest.

I will pass on your message to get recommendations for you. Can you not get out of Colorado?

Merry

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Thank you for responding.
To answer your question, "can we not get out of Colorado", we probably can, as we can travel via travel trailer and stay wherever we want. I think part of that issue is her insurance plan won't pay for put of State unless it's an emergency while we're out of State.

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@thetwoofus

Thank you for responding.
To answer your question, "can we not get out of Colorado", we probably can, as we can travel via travel trailer and stay wherever we want. I think part of that issue is her insurance plan won't pay for put of State unless it's an emergency while we're out of State.

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Hi @thetwoofus, I'd like to add my welcome to @merpreb's. I'd also like to bring in a few additional members into this discussion, like @burrkay, whose wife also has lung cancer and @cindylb whose husband has a tumor of unknown primary being treated as lung cancer.

TheTwoOfUS, aka George, you are asking the right questions that you should discuss with your wife's cancer team. Ask how they will take into account her weight and age. These are factors that are considered carefully. But I would want to hear it from her team who know her entire medical history. Her treatments will also be monitored closely to see if chemo and/or radiation dosages need to be adjusted along the way.

Here are the results of a search on US News which ranks hospitals across the nation.
– Best Hospitals for Cancer in Colorado https://health.usnews.com/best-hospitals/rankings/cancer/colorado

You might inquire if an appointment at Mayo Clinic is possible with your insurance. There may be accommodations available to you if her situation requires expertise that your state doesn't have. You can call Mayo Clinic's Insurance & Billing department to inquire: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

This must be all so scary with all the unknowns. Are they treating the cancer on her carotid artery as a head & neck cancer or as a metastasis of the lung cancer? If you're not sure, that would be a good question to ask.

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I am 70, 100 pounds have cirrhosis and HCC liver cancers and have been seen at UC Health for 2 1/2 years and am doing well. They have top notch specialist for anything that’s wrong. I’ve had targeted radiation from Dr. Lindquist 3 times that have killed all my tumors. I see Dr. Davis for Oncology and Dr. Weiland for hepatology. If they weren’t so good. I’d be at Mayo.

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Hello @thetwoofus

Sorry to hear about your cancer dilemma. I think I was included in this loop because my husband has a cancer of unknown primary – looks kinda like lung cancer, kinda not – being treated as lung cancer for lack of a better option and because we too live in Colorado (Denver metro). Cancer treatment can make people lose weight and strength. My husband has lost 40 pounds with treatment BUT he's still here after 7 years and wouldn't be without treatment. Radiation isn't as rough as chemo for most people but do ask about side effects and risks and 'what ifs' – especially what if we don't move on this right now, etc. We are with Kaiser, so if you'd like information on that, happy to share. I personally am moving to Univ of Colorado health care when I get Medicare in December however. If I can help please reach out. Hugs

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@colleenyoung

Hi @thetwoofus, I'd like to add my welcome to @merpreb's. I'd also like to bring in a few additional members into this discussion, like @burrkay, whose wife also has lung cancer and @cindylb whose husband has a tumor of unknown primary being treated as lung cancer.

TheTwoOfUS, aka George, you are asking the right questions that you should discuss with your wife's cancer team. Ask how they will take into account her weight and age. These are factors that are considered carefully. But I would want to hear it from her team who know her entire medical history. Her treatments will also be monitored closely to see if chemo and/or radiation dosages need to be adjusted along the way.

Here are the results of a search on US News which ranks hospitals across the nation.
– Best Hospitals for Cancer in Colorado https://health.usnews.com/best-hospitals/rankings/cancer/colorado

You might inquire if an appointment at Mayo Clinic is possible with your insurance. There may be accommodations available to you if her situation requires expertise that your state doesn't have. You can call Mayo Clinic's Insurance & Billing department to inquire: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

This must be all so scary with all the unknowns. Are they treating the cancer on her carotid artery as a head & neck cancer or as a metastasis of the lung cancer? If you're not sure, that would be a good question to ask.

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Hello,
thanks for responding.
We know we asked about a recomendation for a good radiologist or center that specializes in treating cancer of the neck but we got a hold of one here today that talked to us about the issue and we we're pretty satisfied with what he told us.
He thinks chemo would be sufficient with no radiation treatments. He feels radiation would create other longterm negative side effects because of where it is in the neck and would not necessarily help to prolong her life but may have enough negative sideffects which could hurt her quality of life. So he thinks no radiation would be best. I tend to believe his assessment makes the most sense. But we won't know what her oncologist is going to recommend until tomorrow.
As for the biopsy, they're not sure exactly what it is or where it came from. She has non small cell but this tumor in the neck gives indications more like small cell which acts and spreads faster. They removed it entirely, but as I said, are now talking both radiation and chemo. Again, we will find out tomorrow,(Thursday) what her oncologist/ team recommendation is. But we're leaning toward possibly doing chemo with no radiation. Even if her oncologist says do both.
At this point we're wondering if there would be another choice other than chemo, which we will be asking her oncologist tomorrow. So tomorrow we will probably be put into the position of having to say yes or no to 3 options… chemo only or chemo and radiation or none at all. They offered her chemo 7 years ago and she said no. Thanks for listening and responding.

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@digibson

I am 70, 100 pounds have cirrhosis and HCC liver cancers and have been seen at UC Health for 2 1/2 years and am doing well. They have top notch specialist for anything that’s wrong. I’ve had targeted radiation from Dr. Lindquist 3 times that have killed all my tumors. I see Dr. Davis for Oncology and Dr. Weiland for hepatology. If they weren’t so good. I’d be at Mayo.

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Thank you very much for responding

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@cindylb

Hello @thetwoofus

Sorry to hear about your cancer dilemma. I think I was included in this loop because my husband has a cancer of unknown primary – looks kinda like lung cancer, kinda not – being treated as lung cancer for lack of a better option and because we too live in Colorado (Denver metro). Cancer treatment can make people lose weight and strength. My husband has lost 40 pounds with treatment BUT he's still here after 7 years and wouldn't be without treatment. Radiation isn't as rough as chemo for most people but do ask about side effects and risks and 'what ifs' – especially what if we don't move on this right now, etc. We are with Kaiser, so if you'd like information on that, happy to share. I personally am moving to Univ of Colorado health care when I get Medicare in December however. If I can help please reach out. Hugs

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Thank you for that info.

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@thetwoofus

Hello,
thanks for responding.
We know we asked about a recomendation for a good radiologist or center that specializes in treating cancer of the neck but we got a hold of one here today that talked to us about the issue and we we're pretty satisfied with what he told us.
He thinks chemo would be sufficient with no radiation treatments. He feels radiation would create other longterm negative side effects because of where it is in the neck and would not necessarily help to prolong her life but may have enough negative sideffects which could hurt her quality of life. So he thinks no radiation would be best. I tend to believe his assessment makes the most sense. But we won't know what her oncologist is going to recommend until tomorrow.
As for the biopsy, they're not sure exactly what it is or where it came from. She has non small cell but this tumor in the neck gives indications more like small cell which acts and spreads faster. They removed it entirely, but as I said, are now talking both radiation and chemo. Again, we will find out tomorrow,(Thursday) what her oncologist/ team recommendation is. But we're leaning toward possibly doing chemo with no radiation. Even if her oncologist says do both.
At this point we're wondering if there would be another choice other than chemo, which we will be asking her oncologist tomorrow. So tomorrow we will probably be put into the position of having to say yes or no to 3 options… chemo only or chemo and radiation or none at all. They offered her chemo 7 years ago and she said no. Thanks for listening and responding.

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My husband said no to chemo initially too and it's certainly no picnic but the doctors try to do as little as possible to get the job done (you might ask about that). Radiation to the neck could cause problems and although it's not quite as tough on a patient during treatment we were surprised that there were radiation side effects that were significant. Have you asked if there is any kind of immunotherapy or targeted therapy that might work? Best wishes to you and your wife.

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@cindylb

My husband said no to chemo initially too and it's certainly no picnic but the doctors try to do as little as possible to get the job done (you might ask about that). Radiation to the neck could cause problems and although it's not quite as tough on a patient during treatment we were surprised that there were radiation side effects that were significant. Have you asked if there is any kind of immunotherapy or targeted therapy that might work? Best wishes to you and your wife.

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She's been on Tarceva and now on Tagrisso for the lung cancer but I don't think they have a targeted therapy for the neck cancer, which they surgically removed, because
they don't seem to know what the cancerous neck tumor exactly is or where it came from. I would guess that's why they're suggesting chemo with radiation and haven't suggested any immunotherapy. I think our big question today is … do we say yes or no to chemo and does it matter where we go to have this done? Sorry our questions are changing from day to day based on the direction and info the doctors are giving us. Originally we were concerned about having a good doctor for the neck because that was scary because it was right up against the carotid artery but that seems not to be an issue now because we don't think we're going to have radiation to the neck. So at this point we're left with the questions of chemo or any other therapy if there is any that would address the neck cancer. This is all because of the neck tumor and not the lung cancer, I guess?
So I think we are at the point of, do we say yes or no to chemo and does it matter where we go to have this done? Or at least I think these are the correct questions we have and this is where we're at.
Thank you for responding.

REPLY
@thetwoofus

She's been on Tarceva and now on Tagrisso for the lung cancer but I don't think they have a targeted therapy for the neck cancer, which they surgically removed, because
they don't seem to know what the cancerous neck tumor exactly is or where it came from. I would guess that's why they're suggesting chemo with radiation and haven't suggested any immunotherapy. I think our big question today is … do we say yes or no to chemo and does it matter where we go to have this done? Sorry our questions are changing from day to day based on the direction and info the doctors are giving us. Originally we were concerned about having a good doctor for the neck because that was scary because it was right up against the carotid artery but that seems not to be an issue now because we don't think we're going to have radiation to the neck. So at this point we're left with the questions of chemo or any other therapy if there is any that would address the neck cancer. This is all because of the neck tumor and not the lung cancer, I guess?
So I think we are at the point of, do we say yes or no to chemo and does it matter where we go to have this done? Or at least I think these are the correct questions we have and this is where we're at.
Thank you for responding.

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Hi,

I just want to say no need for any apology about questions and situation changing. That is the nature of the situation. Sending good vibes. I am sure you will make the right decision for you and your Gracie's situation.

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@thetwoofus

She's been on Tarceva and now on Tagrisso for the lung cancer but I don't think they have a targeted therapy for the neck cancer, which they surgically removed, because
they don't seem to know what the cancerous neck tumor exactly is or where it came from. I would guess that's why they're suggesting chemo with radiation and haven't suggested any immunotherapy. I think our big question today is … do we say yes or no to chemo and does it matter where we go to have this done? Sorry our questions are changing from day to day based on the direction and info the doctors are giving us. Originally we were concerned about having a good doctor for the neck because that was scary because it was right up against the carotid artery but that seems not to be an issue now because we don't think we're going to have radiation to the neck. So at this point we're left with the questions of chemo or any other therapy if there is any that would address the neck cancer. This is all because of the neck tumor and not the lung cancer, I guess?
So I think we are at the point of, do we say yes or no to chemo and does it matter where we go to have this done? Or at least I think these are the correct questions we have and this is where we're at.
Thank you for responding.

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Hi, TheTwoOfUs, how are you and your wife doing? Did you decide to go with chemo?

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