1. < Lung Cancer

Sister just diagnosed with Lung cancer

Posted by kiastar @kiastar, Dec 3, 2020

My sister was just diagnosed with lung cancer she is 63 years old it has Spread to her lymph nodes and her brain (there are multiple tumors in her brain )they are doing a pet scan tomorrow to see if it’s anywhere else. She is also very confuse so it’s hard to talk to her. I think she’s so confused she doesn’t even realize she has cancer. Which is probably a good thing because she is very high anxiety with her health. I have a question because this is so new to our entire family if she asks what’s wrong with her she should actually tell her? I know it wouldn’t be right just to tell her everything is fine but to tell her she has cancer I even have a hard time just saying that word now. He also said she had a mini stroke which they were not able to give her medicine for a stroke protocol because of all the lesions in her brain. Any comments or thoughts would be helpful thank you

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

Merry, Alumni Mentor | @merpreb | Dec 4, 2020

@kiastar- Welcome to Mayo Clinic Connect. Good morning. What a tough, tough position your family is in. When I had my first lung cancer, many years ago, I was the one who told my family what was going on. You have the reverse situation. It is my opinion that your sister should be answered with the truth about her health even if she forgets, or is confused. If I were you I would first ask her what she thinks is wrong. If her memory continues to be vague then give her short, caring sentences. You could say, "you are sick, you have lung cancer." The lesions that have metastasized to her brain from her lungs are still considered lung cancer so you are being honest without overwhelming her. You could tell her that you love her and are working with her doctors to take the best care of her.

I know that the word Cancer is very scary. I have learned through my own experiences (23+ yrs.) that the best way to get as much information and feel more in control from her doctors is to ask direct, specific questions so that you know how best to deal with communicating with your sister. I always have a list of specific questions. I know that it's very difficult at the beginning of any new journey to know what to ask, what do I need to know. I see that you have already begun the process of finding out what is next for her. I'm sure that you have a million questions that you want answers to.

Here are some other resources that will help you learn more and feel more in control. Cancer has a way of making you feel as if you have lost control of your life. I can't imagine how frightened your sister must feel, especially with lesions making her more confused.

I am here for you and will help guide you as much as you need. When you let me know what kind of lung cancer she has then I can be more specific about resources are available.

Lung cancer - Symptoms and causes - Mayo Clinic
(www.mayoclinic.org ›

https://www.cancer.org/ (American Cancer Society)

(www.lung.org › The American Lung Association

Does your sister have someone at home to help care for her? Is she up and about?

Merry

REPLY
kiastar | @kiastar | Dec 4, 2020

First of all Merry thank you very much for talking to me about this. My sister has three adult girls and their father died of cancer a few years ago. Her middle daughter seems to be the one who has taken on the responsibility of everything. My sisters name is Sandy though she likes to be called Sandra and she also has four grandkids which she just adores. Of course she’s the kind of girl that would do anything for anybody. She comes to me a lot when she is down or having problems and me and her do a lot of talking. She has been diagnosed with non-small cell adenocarcinoma it has metastasized to her lymph and brain. Today The radiation oncologist said the brain tumors are tiny which is good, small deposits of cancer cells ,there is no swelling or inflammation. She does go for her pet scan next week to see if it’s any place else the doctor is thinking she had this cancer a good 8 to 9 years. I talked to her a couple times today we do FaceTime I think it helps in she can see who she’s talking to and her speech is getting better than it was still a hard time finding words but you can understand basically what she’s saying she’s start speech therapy soon and she’ll be going three days a week for that. They’re going to do radiation and chemo they’re not sure if the chemo will be pill form yet or IV. This is so surreal I just don’t believe this is happening and you know what really really makes it harder is that she started having symptoms in October and she even had an x-ray that showed a mass on her long and they still didn’t do anything a month of antibiotics. She had her blood test that showed her white blood cells were low and her ANA test was positive. But it took a stroke and a trip to the emergency room to finally get the ball rolling to see what was going on and now she said stage four. We’re not giving up hope we’re going to pray more than pray the doctors do what they need to do to give her quality of life for as long as possible. We are setting up Alexa monitors and everyone’s home so it’ll be easier for her to call family since she can’t really use her telephone anymore I’m hoping that’ll help her to feel a bit more independent. Yes she has her husband at home. Myself and our mom live 2 Hours away. We plan on going to see her in January I will stay a day or two but my mom is going to stay down there with her. We also have a retired nurse of over 35 years in the family and she’s very helpful. She told me she took a shower today. And while we were talking she did stand up from the couch and take a couple stops before we hung up.

So 23+ years are you in remission or are you still fighting. My sister has a lifelong friend and she’s been fighting cancer for 30+ years would be wonderful if we could toast my sister after 23 years. Can I ask you did you have lung cancer and what is it metastasize? Where are you treated at Mayo clinic. I truly hope you have a long and happy life. Take care of yourself

REPLY
2 replies
Mentor
Lisa, Volunteer Mentor | @lls8000 | Dec 5, 2020
In reply to @kiastar "First of all Merry thank you very much for talking to me about this. My sister..." + (show)
@kiastar

First of all Merry thank you very much for talking to me about this. My sister has three adult girls and their father died of cancer a few years ago. Her middle daughter seems to be the one who has taken on the responsibility of everything. My sisters name is Sandy though she likes to be called Sandra and she also has four grandkids which she just adores. Of course she’s the kind of girl that would do anything for anybody. She comes to me a lot when she is down or having problems and me and her do a lot of talking. She has been diagnosed with non-small cell adenocarcinoma it has metastasized to her lymph and brain. Today The radiation oncologist said the brain tumors are tiny which is good, small deposits of cancer cells ,there is no swelling or inflammation. She does go for her pet scan next week to see if it’s any place else the doctor is thinking she had this cancer a good 8 to 9 years. I talked to her a couple times today we do FaceTime I think it helps in she can see who she’s talking to and her speech is getting better than it was still a hard time finding words but you can understand basically what she’s saying she’s start speech therapy soon and she’ll be going three days a week for that. They’re going to do radiation and chemo they’re not sure if the chemo will be pill form yet or IV. This is so surreal I just don’t believe this is happening and you know what really really makes it harder is that she started having symptoms in October and she even had an x-ray that showed a mass on her long and they still didn’t do anything a month of antibiotics. She had her blood test that showed her white blood cells were low and her ANA test was positive. But it took a stroke and a trip to the emergency room to finally get the ball rolling to see what was going on and now she said stage four. We’re not giving up hope we’re going to pray more than pray the doctors do what they need to do to give her quality of life for as long as possible. We are setting up Alexa monitors and everyone’s home so it’ll be easier for her to call family since she can’t really use her telephone anymore I’m hoping that’ll help her to feel a bit more independent. Yes she has her husband at home. Myself and our mom live 2 Hours away. We plan on going to see her in January I will stay a day or two but my mom is going to stay down there with her. We also have a retired nurse of over 35 years in the family and she’s very helpful. She told me she took a shower today. And while we were talking she did stand up from the couch and take a couple stops before we hung up.

So 23+ years are you in remission or are you still fighting. My sister has a lifelong friend and she’s been fighting cancer for 30+ years would be wonderful if we could toast my sister after 23 years. Can I ask you did you have lung cancer and what is it metastasize? Where are you treated at Mayo clinic. I truly hope you have a long and happy life. Take care of yourself

Jump to this post

Good morning, This diagnosis is always devastating. My heart breaks you your family. There are many different types of non small cell adenocarcinoma. Do you know if her doctor has ordered a biomarker test? That can be done through a tissue biopsy or a blood test, and helps to identify gene mutations. Knowing if the cancer is caused by a gene mutation can help direct treatment plans.
There is real science based hope in lung cancer treatments. Research is advancing every year.
I have a genetic mutation called ALK, and while there is no cure, YET!, my targeted therapy treatment has given me a terrific quality of life.
Take care!, Lisa

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 5, 2020
In reply to @kiastar "First of all Merry thank you very much for talking to me about this. My sister..." + (show)
@kiastar

First of all Merry thank you very much for talking to me about this. My sister has three adult girls and their father died of cancer a few years ago. Her middle daughter seems to be the one who has taken on the responsibility of everything. My sisters name is Sandy though she likes to be called Sandra and she also has four grandkids which she just adores. Of course she’s the kind of girl that would do anything for anybody. She comes to me a lot when she is down or having problems and me and her do a lot of talking. She has been diagnosed with non-small cell adenocarcinoma it has metastasized to her lymph and brain. Today The radiation oncologist said the brain tumors are tiny which is good, small deposits of cancer cells ,there is no swelling or inflammation. She does go for her pet scan next week to see if it’s any place else the doctor is thinking she had this cancer a good 8 to 9 years. I talked to her a couple times today we do FaceTime I think it helps in she can see who she’s talking to and her speech is getting better than it was still a hard time finding words but you can understand basically what she’s saying she’s start speech therapy soon and she’ll be going three days a week for that. They’re going to do radiation and chemo they’re not sure if the chemo will be pill form yet or IV. This is so surreal I just don’t believe this is happening and you know what really really makes it harder is that she started having symptoms in October and she even had an x-ray that showed a mass on her long and they still didn’t do anything a month of antibiotics. She had her blood test that showed her white blood cells were low and her ANA test was positive. But it took a stroke and a trip to the emergency room to finally get the ball rolling to see what was going on and now she said stage four. We’re not giving up hope we’re going to pray more than pray the doctors do what they need to do to give her quality of life for as long as possible. We are setting up Alexa monitors and everyone’s home so it’ll be easier for her to call family since she can’t really use her telephone anymore I’m hoping that’ll help her to feel a bit more independent. Yes she has her husband at home. Myself and our mom live 2 Hours away. We plan on going to see her in January I will stay a day or two but my mom is going to stay down there with her. We also have a retired nurse of over 35 years in the family and she’s very helpful. She told me she took a shower today. And while we were talking she did stand up from the couch and take a couple stops before we hung up.

So 23+ years are you in remission or are you still fighting. My sister has a lifelong friend and she’s been fighting cancer for 30+ years would be wonderful if we could toast my sister after 23 years. Can I ask you did you have lung cancer and what is it metastasize? Where are you treated at Mayo clinic. I truly hope you have a long and happy life. Take care of yourself

Jump to this post

@kiastar- Good morning. Sandra sounds as if she has a wonderful support system. Has she been told yet that she has cancer? What does she think is wrong?

Given the wisdom that I see with you, I think that your niece will benefit greatly from your guidance.

My type of cancer is also an NSCLC. It's called Multifocal adenocarcinoma.
https://connect.mayoclinic.org/discussion/multifocal-adenocarcinoma-of-the-lung-continual-recurrences/?utm_campaign=search
These lesions are considered primary, but there are a lot of them. I'm considered "stable" for now. I live in New England and use Mass General. My surgeon has treated me since my first tumor!

I hope that you will stay in touch. Do you think that your niece would like to touch base with COnnect? Since she is her mother's main caregiver we have a wonderful group that would support her.
https://connect.mayoclinic.org/group/caregivers/
Please know that I am here if I can be of further help. Stay safe and well. It's been very nice meeting you.

REPLY
1 reply
kiastar | @kiastar | Dec 6, 2020
In reply to @lls8000 "Good morning, This diagnosis is always devastating. My heart breaks you your family. There are many..." + (show)
@lls8000

Good morning, This diagnosis is always devastating. My heart breaks you your family. There are many different types of non small cell adenocarcinoma. Do you know if her doctor has ordered a biomarker test? That can be done through a tissue biopsy or a blood test, and helps to identify gene mutations. Knowing if the cancer is caused by a gene mutation can help direct treatment plans.
There is real science based hope in lung cancer treatments. Research is advancing every year.
I have a genetic mutation called ALK, and while there is no cure, YET!, my targeted therapy treatment has given me a terrific quality of life.
Take care!, Lisa

Jump to this post

Hi Lisa and thank you for your kind words. She will be getting the biomarker test next week. They’re going to hold off on starting treatment because she suffered a stroke that’s how they actually found the cancer. She will start speech rehab this coming week. And the cancer treatment should start in a week or two after her brain has had time to heal. It does make me happy that you’re been giving a terrific quality of life.
Thank you, Colette

REPLY
kiastar | @kiastar | Dec 6, 2020
In reply to @merpreb "@kiastar- Good morning. Sandra sounds as if she has a wonderful support system. Has she been..." + (show)
@merpreb

@kiastar- Good morning. Sandra sounds as if she has a wonderful support system. Has she been told yet that she has cancer? What does she think is wrong?

Given the wisdom that I see with you, I think that your niece will benefit greatly from your guidance.

My type of cancer is also an NSCLC. It's called Multifocal adenocarcinoma.
https://connect.mayoclinic.org/discussion/multifocal-adenocarcinoma-of-the-lung-continual-recurrences/?utm_campaign=search
These lesions are considered primary, but there are a lot of them. I'm considered "stable" for now. I live in New England and use Mass General. My surgeon has treated me since my first tumor!

I hope that you will stay in touch. Do you think that your niece would like to touch base with COnnect? Since she is her mother's main caregiver we have a wonderful group that would support her.
https://connect.mayoclinic.org/group/caregivers/
Please know that I am here if I can be of further help. Stay safe and well. It's been very nice meeting you.

Jump to this post

Yes she knows she has cancer but not the extent of it. Because of the stroke she suffered she’s having a hard time understanding some things.. She’ll start speech therapy next week. My niece did set up a website called caring bridge and I did put this website on there. She lives in Illinois and has been seen at Northwestern medical hospital and they’re going to get a second opinion at Northwestern of Chicago it’s been nice to meet you also please stay well.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 7, 2020
In reply to @kiastar "Yes she knows she has cancer but not the extent of it. Because of the stroke..." + (show)
@kiastar

Yes she knows she has cancer but not the extent of it. Because of the stroke she suffered she’s having a hard time understanding some things.. She’ll start speech therapy next week. My niece did set up a website called caring bridge and I did put this website on there. She lives in Illinois and has been seen at Northwestern medical hospital and they’re going to get a second opinion at Northwestern of Chicago it’s been nice to meet you also please stay well.

Jump to this post

@kiastar- A close friend of mine also has a a Caring Bridge site. They are wonderful. Have you attempted to explain to her the extent of her cancer? Do the doctors think that the cancer caused her stroke?

How are you holding up? And you niece?

REPLY
1 reply
kiastar | @kiastar | Dec 12, 2020
In reply to @merpreb "@kiastar- A close friend of mine also has a a Caring Bridge site. They are wonderful...." + (show)
@merpreb

@kiastar- A close friend of mine also has a a Caring Bridge site. They are wonderful. Have you attempted to explain to her the extent of her cancer? Do the doctors think that the cancer caused her stroke?

How are you holding up? And you niece?

Jump to this post

They’re not sure what caused the stroke. She’s back in the hospital today with possible pneumonia ,doing another CT scan..Can’t really hold a conversation with her because of her stroke (ca) shes not understanding some things. She didn’t recognize our mom the other day. Her husband says he’s had to feed her and clean her up after going to the bathroom. I just feel sick

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 13, 2020
In reply to @kiastar "They’re not sure what caused the stroke. She’s back in the hospital today with possible pneumonia..." + (show)
@kiastar

They’re not sure what caused the stroke. She’s back in the hospital today with possible pneumonia ,doing another CT scan..Can’t really hold a conversation with her because of her stroke (ca) shes not understanding some things. She didn’t recognize our mom the other day. Her husband says he’s had to feed her and clean her up after going to the bathroom. I just feel sick

Jump to this post

@kiastar- I know that this is devastating for you, I can actually feel it. It's like seeing a different person that looks like your sister yet isn't her. Are you able to visit? I hadn't realized that her stroke was that severe. Perhaps when she is discharged someone to help her husband with her daily showers and home care would help? It must be so undignifying for your sister.

What do you think you could do to help your sister? There are many things that you can do to help her be more comfortable after she comes home from the hospital. Here is some information that might be of interest to you.
https://my.clevelandclinic.org/health/articles/10408-right--and-left-brain-strokes-tips-for-the-caregiver
I am hoping that a couple of my mentor friends will pitch in here if you have any questions about strokes
@johnbishop @becsbuddy @hopeful33250

- Stroke & Cerebrovascular Diseases https://connect.mayoclinic.org/group/cerebrovascular-diseases/

Connect has a group that discusses strokes. At this time you might want to read a few discussions to help you understand a bit better. Do you know the exact type of stroke that she had?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 13, 2020
In reply to @merpreb "@kiastar- I know that this is devastating for you, I can actually feel it. It's like..." + (show)
@merpreb

@kiastar- I know that this is devastating for you, I can actually feel it. It's like seeing a different person that looks like your sister yet isn't her. Are you able to visit? I hadn't realized that her stroke was that severe. Perhaps when she is discharged someone to help her husband with her daily showers and home care would help? It must be so undignifying for your sister.

What do you think you could do to help your sister? There are many things that you can do to help her be more comfortable after she comes home from the hospital. Here is some information that might be of interest to you.
https://my.clevelandclinic.org/health/articles/10408-right--and-left-brain-strokes-tips-for-the-caregiver
I am hoping that a couple of my mentor friends will pitch in here if you have any questions about strokes
@johnbishop @becsbuddy @hopeful33250

- Stroke & Cerebrovascular Diseases https://connect.mayoclinic.org/group/cerebrovascular-diseases/

Connect has a group that discusses strokes. At this time you might want to read a few discussions to help you understand a bit better. Do you know the exact type of stroke that she had?

Jump to this post

Thank you for the tag @merpreb, There is another older discussion that has new posts from October that @kiastar may find helpful. @IndianaScott also may have some tips or suggestions to share.

Stroke survivor - always hungry: https://connect.mayoclinic.org/discussion/stroke-survivor-always-hungry/

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