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Susanrae

stage IV lung ca diagnosis with brain mets

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Newly diagnosed Stage IV lung ca with brain metastasis.  2 cm tumor removed from brain a little over two weeks ago.  Still waiting for lung panel results to start treatment for lung ca.  Looking forward to communicating with everyone.  Hope I am inserting this into the right area.

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Susanrae,

Any place is a good place for an intro. We’ll find you!

Sorry to learn of your DX and hope you are recovering from surgery. 

You said stage IV, do you have info on your primary lung tumors. Thinking your brain tumor is a distant metastasis. Are they biopsying the brain tumor. It is pretty common these days but ensure your biopsy seeks to identify bio markers for Targeted Treatment or Immunotherapy. Your biopsy should also identify your type and subtype of lung cancer. These last two are important because treatment plan design hinges on identity. 

Questions? Ask away. Welcome here. 

Stay the course. 

Tom

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Hello and Welcome Susanrae, 

We understand what you are going through.  The waiting for results is difficult however as Tom says will help determine what is the best course of action for you. There have been more advances in lung cancer treatments in the last three years than in the last 30.  There is always something to hope for. You may want to read this short essay: 

https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01

Let us know how we can help you.  We're your new friends. 

Michelle 

 

 

 

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Hello Susanrae, Welcome. 

I hope your brain surgery went well, that's tough stuff.  

I see you are here in Minnesota.  I am close to the Twin Cities  .. Are you going to Rochester for treatment?

Please keep us posted on what is up next.  Feel free to ask questions.  As said above------ there are great advances being made in 

new treatments .   Wishing you the best.

Donna G

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Hi Susanrae,

Welcome here!  Others have given you good info. I don't have much to add. Let us know what questions you have and how we can support you.

Bridget

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Welcome Susasanre.  I’m sorry to hear of your DX.  You’ve found a great group of people and already gotten some good advice.   Let us know how we can help. 

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Susan can I asked how did you know it was in your brain?  My husband had stage 3 lung cancer last year and now 4 more tumors close to his pulmonary artery.  He is having headaches and trouble focusing.  

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Thanks so much for the welcome!   I do have non small cell lung ca, adenocarcinoma.  Tom, are these my type and subtype?   I am currently waiting for results of my Lung Panel to determine which of the targeted/immunotherapies would be best for me.  Hopefully, the results will be back early this week.  The Mayo Clinic in Rochester, MN, is taking good care of me.  I do feel I am in good hands.

Donna G:  are you receiving treatment in the Twin Cities?  

Thanks again for the Welcome!  It is SOOOOOO nice to hear from others that are going through the same thing and I truly appreciate all of your words of encouragement.  What a lifesaver!  I really needed the boost!    Take care all of you.

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On 5/11/2019 at 3:23 PM, Doreen Jeanneret said:

Susan can I asked how did you know it was in your brain?  My husband had stage 3 lung cancer last year and now 4 more tumors close to his pulmonary artery.  He is having headaches and trouble focusing.  

Hi Doreen-

Those are very important issues to report to the onc. My onc does a series of reflex tests at each visit. I get a brain MRI every six months for routine monitoring.  If you’re uncomfortable  then advocate for the MRI.  My onc is very cautious and takes all my issues seriously.  Hope this helps. 

Michelle

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Hi Michelle:  An MRI was done which is how the medical professionals found out it was in my brain.  If your husband is having headaches (which I did before the MRI) and having trouble focusing, I would definitely mention these problems like pronto to your care providers.  Good luck to you and your husband.  It is very scary but persevere!!!  You all take care now.  Susan

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Hi Doreen:  

Sorry, that I initially addressed this to Michelle; I am very new to this site.  

An MRI was done which is how the medical professionals found out it was in my brain.  If your husband is having headaches (which I did before the MRI) and having trouble focusing, I would definitely mention these problems like pronto to your care providers.  Good luck to you and your husband.  It is very scary but persevere!!!  You all take care now.  Susan

 

 

 

 

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Susan,

Yes, you got it: non small cell (type), adenocarcinoma (sub type) lung cancer is your DX. 

Hope you get your biopsy results back quickly. 

Stay the course. 

Tom

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Susan,

Do you know if they did biomarker testing on your tumor?  This would determine if you are a candidate for targeted therapies or immunotherapies.  

Mayo is a great facility.  I have contacts in the area if you are looking to connect with someone for peer to peer support.  Also, Dr. Lynne Eldridge is in your neck of the woods.  It helps to have a strong lung cancer advocate in your backyard, so to speak.  

How are you feeling?  Give us an update when you feel up to it and I'll pop around the forums to see if you already have.

Best hopes,

KatieB

 

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Susanrae .  In answer to your question.  I did receive treatment in the Twin Cities.  My treatment was

finished in 1998-------------------- !  I saw my doctor at a local clinic but she was a Onacology Professor at the U of M.

My husband did receive treatment here also but at the VA hospital at Fort Snelling .

Donna G

 

 

 

 

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Thanks for letting me know Donna.  Good to hear your treatment was finished in 1998!  Hope your hubby is doing well too.  Take care, Susanrae

 

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Sorry you lost your husband.  I did not read that portion of your post initially.  Will be much more careful in the future.  My sincere apologies.  Susanrae

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SusanRae,

Sorry to hear about your diagnosis but you have found an excellent place for support as well as answers.

Keep asking away and before you know it, someone will have a reply.


Wishing you all the best!

 

Ro

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