Jump to content
Sparkles

What questions to ask?

Recommended Posts

My sister-in-law has just been diagnosed with lung cancer. Her and her husband live in AZ, we are in Iowa. The distance, waiting and frustration of getting so little information is difficult for the family. We get mixed details, the sister-in-law tells one thing, the husband tells something different or adds things.

I would like some help understanding what's taking so long to figure things out. Any information is appreciated. If you can advise questions we should be asking the husband please post. thanks in advance!

Here is what I DO know - 

  • Age 62
  • Patient at Banner Desert Medical Center Mesa,AZ
  • Lung cancer that has also appeared in her brain
  • Full body scan has been done, no other locations of cancer. However, we were told there is a mass in her right lung and also "one in the middle" - no idea what that means
  • Bronchoscopy was inconclusive today.
  • Bone Scan also today was clean, no cancer
  • Tomorrow morning they will be doing another biopsy on her lungs.  Procedure will use a needle that they will run from her back into her mass on her lungs.  Results will take about 48 hours to get.

What we dont know, either because my sister-in-law and hubs arent telling us, or the doctors arent telling them

  • What stage is the cancer?
  • What type of cancer is it?
  • What is the normal survival rate?
  • What is the usual treatment for this?
  • WHEN SHOULD WE GO TO ARIZONA? - there are 2 sisters and one brother, we are very anxious to be with her but are afraid to go "too soon". None of us are independently wealthy so multiple trips will be hard for everyone as will staying for longer than, at most, 2 weeks.
  • What can we expect next??

The internet is helpful but also harmful. I'm turning to you, people who have experienced this, to help us through it.

thank you!!!

Share this post


Link to post
Share on other sites

Hi Sparkles,

It can definitely be frustrating for those of us who are not close by to stay in the loop and get our own questions answered. From the limited information you have, it sounds like there isn't a definitive answer as to what type of cancer your sister-in-law has because they have not had a successful biopsy yet.  Hopefully tomorrow's biopsy will yield a decent sample to send off for testing.  That will be able to tell docs what type of cancer it is and if there are any special properties to it that will open up newer treatment options.  

As far as life expectancy, there is no one that can tell your sister-in-law or anyone else how long someone will live (even in the most general terms).  Yes, historically lung cancer survival rates have been very grim, but with new treatment options, people are living longer.  Lung cancer is not a definite death sentence anymore.  I understand that it's important to have an idea of what to expect with cancer and treatment, but the reality is that everyone is different.

As far as when should you go to Arizona, go now, the weather isn't too hot.  If you are going just because your sister-in-law has cancer, let her be the one to tell you when she wants/needs you to come.  Please be patient with her and her husband, they have just been punched in the gut with this diagnosis and are dealing with much more than we can ever imagine.  It's not surprising that you are being told differing information, they are probably quite overwhelmed with the entire situation.

Take care,

Steff

Share this post


Link to post
Share on other sites

Hi, Sparkles,

If they are still trying to get a biopsy then they can't know yet what kind of cancer it is.  That can only be determined with a biopsy and/or surgery.

You don't need to rush out there to be with her.  I'd suggest waiting till they have more information and ask them what would be helpful.  Having lots of visitors isn't necessarily helpful, especially when they are still doing lots of tests.  It could be a while before they have enough information to determine a course of treatment, and sometimes the treatment will change, depending on the response.

I'd suggest staying away from questions about survival rate, etc.  First of all, statistics are based on people who were diagnosed more than five years ago.  Treatments have GREATLY improved.  If there has been metastasis to the brain, then most likely she will be getting some combination of chemotherapy, radiation, and/or targeted therapy or immunotherapy, depending on what the tests reveal about her type of cancer and any genetic mutations it may have.  

We have a quite a few long-term survivors here, even with advanced lung cancer.  So there's a good chance she will be around for a very long time to come.  I'd suggest sitting tight for now, and also realize that they may not want to share all the details.  I'd suggest just letting them know you're concerned and want to provide whatever support will be most helpful to them.  

Share this post


Link to post
Share on other sites

Hi Sparkles and welcome. I agree with LexiCat and Steff about all of this. You probably arent getting answers to your questions because there aren't answers yet. (except for the survival question, which really has no answer). I suggest you go to Lung Cancer 101 on the main Lungevity site  https://lungevity.org/for-patients-caregivers/lung-cancer-101. this site might give you some addtional information about lung cancer that could be helpful in understanding your sister-in-laws illness.

Bridget O

Share this post


Link to post
Share on other sites

Sparkles,

Welcome here!

Agree with everything Steff and Lexi stated.  This will be a specific response to your questions.

  • What stage is the cancer: Do not know yet. If there is one mass in the lung, one in the middle, and a tumor in the brain, it would likely be staged at IV.
  • What type of cancer is it:  Won't know till the biopsy is complete.  Here is more information on the types and subtypes of lung cancer. 
  • What is the normal survival rate: There is no normal rate.  Everyone is different.  While lung cancer nearly killed me, in February, I will have survived 15 years beyond my diagnosis. Read this for more insight into lung cancer survival statistics.
  • What is the usual treatment for this: If stage IV with a primary in the lung, secondary in the middle of the lung, and metastasis in the brain, the likely treatment would be radiation (precision or whole brain) to the brain, perhaps conventional radiation to the chest, and chemotherapy.  Depending on the biopsy result, targeted therapy and or immunotherapy could also be used. Keep in mind, I am not a doctor and doctors won't know until a biopsy is complete.
  • When should you go to Arizona: This is a very hard questions to answer. I think the best way to approach this is to wait until treatment starts. Sometimes chemotherapy has side effects that make normal life activities difficult.  If this is the case for your SIL and you and family want to lift that burden, then go during the period when her side effects occur. Fortunately, they normally occur the same number of hours after each chemotherapy infusion.  Alternatively, your SIL might not want visitors. Another thing to consider is it is not advisable to bring school aged children because they are normally exposed to a lot of illness while at school.  One's immune system may be compromised from chemotherapy and a little chest cold could turn into a big problem.
  • What can you expect next?  The results of the biopsy.  Then about 2 weeks later, a treatment plan should be developed.  About 2 weeks after the plan, treatment may start.  Again, this timing is a projection attempt.  There is no fixed timeframe and 2 weeks could turn out to be a month.  Everyone's cancer is different and it effects everyone differently.

Here is what you can do.  I linked several sections of Lung Cancer 101, our resource for easy to read and understand information about lung cancer.  I'd read it all.  I send a like to your SIL and her husband and encourage them to read it.  I believe knowledge is power and lung cancer is complicated and the vocabulary is immensely confusing. So, get armed with information so you know what questions to ask and understand answers.

This is a good place for questions by the way.

Stay the course.

Tom

Share this post


Link to post
Share on other sites

Oh my goodness! Thank you to everyone who has commented so far. I personally am so much more at ease now. I am a HUGE information-is-power person and all the advice, links and insight are exactly what I needed. I will share what I learn with the hubs to help him understand the process. As with any terminal illness, no one knows much about it until they HAVE to know. 

This morning we woke up to this news -

"Jeannette is having a non-invasive procedure to get another sample to biopsy. The last sample was dead tissue and could not be used. They will not have any information until Monday. She will hopefully be heading home tomorrow after the procedure, as long as her numbers are good."

So great news for her, getting to go home sometime later today. Home is such a better place to be than the hospital. - My new question - is "dead tissue" a bad sign?

We will sit tight as suggested by all of you. Since her hubs is 74 and she is his primary care-giver as he has so many ailments of his own, going down to be with her during her treatment is excellent advice. Luckily there are 3 siblings and they can possibly go in shifts so that they arent all there at the same time. 

Because of the life I live and the program I work, One day at a time is all we can live and take care of. Yesterday is past and tomorrow will come on its own. Today is a gift.

I can not express how much this forum has helped already.

Thank you - thank you - thank you

Sparkle On!

 

 

Share this post


Link to post
Share on other sites

Hi, Sparkles,

I’m glad to see you’ve already connected with several of our members and moderators. This community is a great place to find information and support. Please continue to keep us posted, ask questions, and join in on the conversations. I would be happy to provide you with additional information about LUNGevity’s support and education resources and programs. We are here for you!

With gratitude,

Lauren

Digital Community Manager
LUNGevity Foundation

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×