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Wookey

Caring for mum with LC met to brain

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Hello all, hoping you can help perhaps? My 74-year-old mum has been in hospital for sclc top-left lobe. That was removed in surgery last week, and despite having a pulmonary bleed on the table which early ended things, and a lung infection, mum has been recovering well.

She was told by her oncologist today that her recent headaches are because the Squamous Cell has metastised to her brain - I don't know how many, or how bad. But he has told her she has less than a year to live.

I am trying to see her oncologist tomorrow, and he will no doubt tell me more, but are there any links I can be looking at, about potential treatments?

I also need to know what to say to someone who has just been told they have a year to live. :(

Any advice gratefully received, I'm in the UK.

 

x

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Hi Wookey,

Welcome to the nicest forum no one wanted to join.

I'd start the research here 

I don't think you need to say anything regarding the prognosis unless she brings it up.  Soon after my diagnosis and being told by the pulmonologist that the 5 year survival rate (I have Stage 3B) is 15%, a nurse told me "if YOU are the who survives, why does the statistics matter?", it was so very devastating nonetheless as I was not only "extremely fit" (that's what my oncologists, yes, plural, wrote on their notes) but I was also just 44.  I didn't want anyone to give me any lip service - of course your mom may feel different... - once I got over the shock, I got ready for the battle 😀

Take a notepad with you when you accompany her to the appointments. 

When you don't know what to say, give her a hug.  If you know what to say, say it and still give her a hug.

Feel free to ask questions.  Feel free to vent.  Let us know how we can help you.

Hugs,

MB

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Wookey,

Small cell and brain mets are an inconvenient truth. There are ways of treating brain mets. WBRT or whole brain radiation therapy is the oldest and most common. It is used when many small mets are found throughout the brain. It can work. It can also produce some quality of life side effects. 

If there are a handful of mets, then precision radiation can be useful. It has far fewer side effects. The overarching problem with brain mets is their tendency to recur, especially with small cell. 

Small cell treatment just a short time ago was thirty years old. Thankfully, advances in immunotherapy have improved outcomes but brain mets are difficult to arrest. 

My treatment team was unwilling to dwell in prognosis prediction. Nevertheless, I pressed my oncologist and his answer was sobering and frightening. Dr. Google was worse portending doom, gloom and misery. That was more than 15 years ago and I’m still here despite innumerable treatments. 

Ask your mom’s doc about radiation as a treatment method. I do hope treatment is available and helpful. 

Stay the course. 

Tom

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Wookey  welcome to our group.  I was confused when I started reading your post.  

In the USA we refer to sclc as an abbreviation of small cell lung cancer, that is not operable.  

Later you talk of squamous cell  soooo----  she really has NSCLC  ( non small cell lung cancer) 

If she had it removed from her lung , are they not able to remove the brain tumor or at least treat it 

with radiation or something. That would really improve her prognosis.

Donna G

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Hi Wookey and welcome.  I'm sorrry to hear about your mom's illness. Like Donna, I'm confused about whether the cancer is small cell or squamous cell.  Also,  you don't mention whether she's had an MRI of her brain-- this is usually how brain mets are diagnosed. Keep posting and let us know what questions you have-- often we'll respond with our own questions. We're here to support you.

Bridget O

 

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Thankyou for your replies everyone, I really appreciate it!

I'm also confused, as they told us at the beginning it was Squamous Cell, but when I asked mum yesterday she said it was large cell - is that the same thing?

I called this morning, and her main doctor is on holiday for the next week, and they can't confirm anything over the phone, so I'm going in tomorrow to talk to the duty doctor with a pad and pen.

Feel a bit in shock at the moment so goodness knows what mum's going through. :(

She's having a new MRI scan yes, full head and body one in the next few days apparently, that's something else to ask about.

Communication between hospital and me hasn't been ideal, and I've never navigated this before, I feel the need to ask for a planned bedside meeting with mum as there are too many side conversations going on...

ETA: Sorry, she's had the full MRI scan this week already, that's what showed the metastised cancer on her skull.

Edited by Wookey

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On ‎8‎/‎6‎/‎2019 at 10:05 PM, Donna G said:

Wookey  welcome to our group.  I was confused when I started reading your post.  

In the USA we refer to sclc as an abbreviation of small cell lung cancer, that is not operable.  

Later you talk of squamous cell  soooo----  she really has NSCLC  ( non small cell lung cancer) 

If she had it removed from her lung , are they not able to remove the brain tumor or at least treat it 

with radiation or something. That would really improve her prognosis.

Donna G

Hi Donna! That's the thing, I don't even know how a prognosis works! He said he hadn't looked in detail at the scan results and they hadn't had the cancer team meeting yet, but he could say she had this brain secondary and no more than a year to live...I mean, is that with treatment even, or without? No slowing it down? Is that year thing an average of people who've had lung cancer going to the brain, is it out of date, is there ANY HOPE AT ALL?

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Hi Wookey,

the prognosis they give you is the average based on the type/stage of the cancer and that is with treatment.  I'd like to think there is always a reason to hope, especially with all the new LC treatments available. Of course, the effectiveness varies as everyone's cancer is different and how your mom/her body handles have a very big impact on the outcome.  The healthier you are going into treatments, the better outcome, obviously.

MB

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Wookey,

I am sorry you are going through this with your mom.  It was challenging for me to step into the advocate role for my mom even though I am an advocate for those who are experiencing homelessness every day in my work.  It seemed I had more to lose should my advocacy fail, which added to the pressure.  Diagnosis, whether it be initial or for recurrence is a confusing time, especially with all of the new treatment options that are popping up on a daily basis.  A piece of advice: take it 1 step at a time.  Start with finding out exactly what type of cancer she has.  That will take you to the next step of researching treatment options, etc, etc.  

As to what you should say to your mom, remember you are still her daughter.  That relationship trumps any cancer diagnosis.  Be there for her as you would normally.  Be her voice when her voice is too weak or she is feeling defeated.  Some patients want to know all there is to know about their diagnosis, others do not.  My mom was the latter, so I made it my job to be the one to be the all knowing.  That is why LUNGevity and these forums are so important to me. I not only got up-to-date information, but support as well. 

I also took on the role of the cheerleader.  This meant I was very positive in front of her, setting my feelings aside.  This isn't the healthiest way to do things, but it's what I do.  In the 4+ years since my mom's initial diagnosis, I have broken down 1 time in front of her.  This moment brought us closer to one another than ever before (I didn't think that was possible).  For that moment, my mom got to be my mom and I got to be the daughter, nothing else mattered.  She needed to see my emotions just as much as I felt I needed to hide them.

Finally, forget the statistics and the amount of time docs gave your mom.  She is an individual, individuals survive lung cancer everyday.  You asked if there is hope, yes there is.  It's not an easy journey by any means and often the patient will take 1 step forward and 5 steps back.  It's a very frustrating time, but there is hope.  No matter what the outcome is for my mom or yours, lung cancer taught my mom and I to appreciate every day, even the little things.  I hope that this is something you can do with your mom.  None of us know how much time we have left.  A cancer diagnosis just sheds light on that fact.  

Take care,

Steff

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