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New - Mother with Stage IIIB (?)


Yeosthename

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Hi Everyone,

I am the daughter of a newly Diagnosed non-small cell patient.... We are guessing stage IIIB - we will have confirmation on the stage tomorrow.

This is what we know so far...

Mass in the upper left lobe, the size of a mans fist with spinal compression - 5 radiation treatments and steroids have begun to attempt to relieve the compression.

Mets to the lymph nodes which has only so far been described as "multiple 1cm tumours"

Mets to the bone in the rib cage area.

It is not in her brain (thankfully)

What we have been told so far is that its inoperable and incurable, and that the treatments being offered are palliative to enhance quality of life... I am not exactly sure what they're saying by this?? It feels to me that using that terminology they have issued a death sentence.

My mothers condition is quite frail, but she has always been a tiny frail person who has survived cancer once already and survived a nearly fatal reaction to the flu shot 3 years ago. She is tiny... But she has grit.

Has anyone else just started treatments with 5 doses of radiation? If so, is there usually some kind of follow up radiation treatments afterwards??

We have not really been given much more options then that...

I should also note that we are located in Canada.

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Hi, Yeo, and welcome!  With distant metastases, she would be Stage IV.  My guess is that the radiation will be followed by a course of drug treatment.  Some people here with advanced cancer have responded well to immunotherapy.  It's very challenging to fight lung cancer once it's fairly far advanced.  None of us--even people without cancer--knows exactly how long we will be around. But the newest treatments can often extend life significantly, and palliative treatments can enhance the quality of that life.  The cancer may not be curable, but it may remain treatable.

You should ask her doctors what the plan is for after radiation.  

I'm sorry for your mom's diagnosis, but glad you found us here.  This is a great place for information and support.

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Hi there,

My mom has advanced stage lung cancer too. We do not like to use the term cure for any stage of the disease because lung cancer is persistent and is likely to recur at some point. So, just because your mom can't be cured, doesn't mean that she can't live a full life. My mom's  lung cancer is being treated as any other ongoing chronic condition- with continued treatment. And she lives her life to the fullest. That does not mean there hasn't been tough times, but those tough times gave way to great times. 

I imagine your mom's  initial treatment plan of 5 rounds of radiation is just intended to provide some relief. After the treatment is complete, it is likely her docs will reevaluate the situation and come up with a follow up plan....one step at a time.

You mentioned that your mom had NSCLC. My mom does too - adenocarcinoma. She's been on immunotherapy for 1 year and her cancer is responding well. Perhaps your mom's cancer will be a good candidate for immunotherapy too.

Take care, 

Steff 

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Sorry to hear about your mom.  Has your mom had a biopsy yet? If not, request one and insist that they perform genetic testing.  Certain mutations respond quite well to immunotherapy.  At the very least, her medical team should do everything possible to alleviate her symptoms until radiation can knock some of these tumors back.  I know there are some on this board who were told, initially, that the tumor was inoperable but after treatment to shrink the tumor, it became operable.  You'll hear from many of us in the next few days.  Ask us anything - we're here for you and your mom. 

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Hi Everyone,

Thanks for the responses. I have just returned from a meeting with the oncologist.

The official word on the stage is 3B -

We are told that she is broad stage 3B as they cant definitively place her in a category with in the NSCLC because her tests were inconclusive for a specific type. They did however send her samples for testing for mutations and we should have that answer in 2 weeks.

At this point she is not a candidate for chemo because she has become so weak in the amount of time it took for her GP to stop treating her for a pulled muscle and send her for some real testing. Had this been caught when it first started back in March her treatment plan would have been significantly different.

We are hoping that the radiation helps to shrink the tumour, and we can build up some of her strength in the coming weeks to maybe change that.

Until then, our main focus is pain management. 

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I hope the molecular testing suggests an effective treatment.

I'm still confused about the staging.  My understanding is that the metastasis to the rib would make it Stage IV--maybe they aren't certain about its presence there?

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  • 1 month later...

Hello everyone,

thank you to those that commented ok this thread. I have an update and I definitely wish it was better. 

On the Canadian thanksgiving 3 weeks ago we had our last family dinner. We had it on Saturday. On Sunday the spinal compression cut off moms ability to move her legs. She asked to go to the hospital where she was placed in hospice. 

On Tuesday she signed the DNR and asked for the minister who came in and met with us. 

On Wednesday October 10 she was brought breakfast at 8:30 and ate a little. The dr came at 9 to discuss the pain pump mom had requested. When they came back at 9:30 to place the pump they found that mom had slipped away in that 30 mins. She was stable and talking... and then just gone. 

It’s been a crazy 2.5 weeks. It still doesn’t feel real at this point. It feels like she’s just at home and I’m at my place despite doing her hair for the funeral, and standing up and giving a eulogy. 

We feel cheated by the system. They took far too long in the testing process and it took her far too quickly. Just 10 weeks from the point where they figured out what was actually going on as opposed to treating her for a pulled muscle for over 2 months. 

I just wanted to say thank you and wish every one else well on this journey and hope everyone facing a new diagnosis wins the fight. And when you fight I’m sure my momma will try to help you fight. 

In memory ~ B.A. Yeo ~

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Oh, Yeo, I'm so sorry.  It's such a shock when it all happens so quickly.  I'm glad you were able to have Thanksgiving together, and glad she was able to pass without too much distress.  Very hard for those left behind, though.

I lost my own mom to metastatic breast cancer--she was apparently free of cancer for over five years and when it came back it was in the form of a spinal tumor.  She was being treated for what they thought was a repetitive stress injury (tennis elbow--she worked in a florist's shop in Hawaii stringing leis and that's what they thought the problem was).  When it's something like that, unless they have reason to believe it might represent a cancer, they usually don't go looking for that--not immediately, anyway.  Most of the time it IS a pulled muscle, tennis elbow, or whatever.   Given how quickly your mom's cancer progressed, it probably would not have changed the outcome if the doctors had found it a few weeks sooner.  

I'm very sorry for your loss--my mom died over 30 years ago and I still miss her, but eventually the warm memories eased the pain.  

You and your family are in my thoughts.

Teri

 

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I' m sorry too for your loss. I wish there was more I could say to be of comfort.  Like LexieCat, I'm glad  your mom was able to have Thanksgiving with you. I wish peace for you and your family.

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Yeo,

I too am so very sorry for you and your family's loss.  I hope you are able to find peace to enable you to remember all of the fabulous times with your mom.  It makes me wish I had hugged my mom a bit more before I headed back home this weekend.  Hugs to you and your family.  

Take Care,

Steff

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