Seeking support

[sunny_hope]

Hello everyone,

My name is Hope, I just joined this forum in the hopes of finding some support and perhaps some advice.

My mother (65 yrs) is one of the healthiest individuals I know. She's retired years ago but is always active and takes care of herself. Her story goes like this.

One night in February she woke up to a sharp excruciating pains on the right side of her abdomen that kept going and coming, more frequently and severely every day. After almost two months of hospital visits and misdiagnoses (from gallstones to slipped disc), in April she has been diagnosed stage IV lung cancer. We're looking at squamous cell carcinoma in one of her lungs with bilateral adrenal metastases and possibly the liver. We kind of felt that cancer was the cause of it all, but it being in the lungs was a surprise. We don't have any smokers in the family, and the only symptom she's had was the abdomen pain. 

The doctor was (oddly, in my opinion, but it was much needed now that I look back on it) optimistic. They said they couldn't completely cure her of the cancer, so the course of action was palliative radiotherapy followed by chemo and immunotherapy. Then came the third week when I noticed her temperature was quite high and she was shaking all over. Going to the ER with my other sister, her situation turned out to be a lot more critical than we first anticipated: fever was caused by the pneumonia which also caused fluid buildup and a small blood clot reached her sick lung. They didn't think she was going to make it; that was Aug 2. She proved everyone wrong though as today, Aug 18, she got discharged from the hospital and is safely back home. She's not fully recovered yet and still needs an oxygen supply most of the time, but she's slowly getting better and better.

However, apparently the tumor has not shrunk after her first treatment session. And her treating physician, after seeing her critical condition, concluded that my mother is not fit for more chemo/immunotherapy sessions and transferred her case to palliative care.  As you can imagine I feel confused, frustrated, and lost. How could he "give up" so quickly? And why didn't he even consider other alternatives? What if she recovered that she'd be strong enough for another session?

I was wondering if anyone has been through a similar situation or knows someone who has. What have they done? I'm still trying to research and learn more about NSCLC and the options available for patients, so any feedback is much appreciated.

If you've reached this far, thank you for reading! Hopefully my post wasn't too long

[LUNGevityKristin]

I'm so sorry to hear of your mother's diagnosis.  Did your mom have biomarker testing done? Is she being treated at a major medical center?  

[LouT]

Hope

First let me say that I am sorry to hear about your mother's condition. None of this can be easy for any of you.  We understand the turmoil and fear, since we all went through it. 

Kristin is asking good questions about your mother's condition.  If she is a never smoker she may have a genetic basis contributing to her present illness. And sometimes those cases can be treated differently (immunotherapy), so please find out. If they didn't do the test then you should advocate for it.

I also want to add that anytime you feel you need to question the recommendation of your medical team please get a second (or even a third) opinion.  Many here have and it made a big difference in their outcome. 

We look forward to hearing more about the situation and what actions you decide to take. 

Lou

[Tom Galli]

Hope,

Oh my!

I wonder if your mother's had a consultation with a radiation oncologist. Some today are treating multi-focal tumors with precision radiation. While not a standard of care, some radiation oncologists are stretching to zap multiple tumors with curative intent. 

This treatment worked for me, saving my life when chemo would no longer work on my squamous cell lung cancer. You need to find the right practitioner but people in the LUNGevity community have had multi-focal precision radiation with positive results. Let us know the city and country your mother lives in, and I might be able to suggest a radiation oncologist.

Stay the course.

Tom

[sunny_hope]

thank you Kristin, Lou, and Tom for your kind words and warm welcome.

On 8/19/2021 at 8:48 PM, LUNGevityKristin said:

I'm so sorry to hear of your mother's diagnosis.  Did your mom have biomarker testing done? Is she being treated at a major medical center?  

i was informed by the doctor that she was tested for PD-L1, but since she had an amount less than 50%, they couldn’t try immunotherapy by itself. the hospital is supposed to be one of the largest medical centers in my city. 

 

On 8/20/2021 at 6:52 AM, LouT said:

Hope

First let me say that I am sorry to hear about your mother's condition. None of this can be easy for any of you.  We understand the turmoil and fear, since we all went through it. 

Kristin is asking good questions about your mother's condition.  If she is a never smoker she may have a genetic basis contributing to her present illness. And sometimes those cases can be treated differently (immunotherapy), so please find out. If they didn't do the test then you should advocate for it.

I also want to add that anytime you feel you need to question the recommendation of your medical team please get a second (or even a third) opinion.  Many here have and it made a big difference in their outcome. 

We look forward to hearing more about the situation and what actions you decide to take. 

Lou

the doctors suspect the cause of the cancer is due to her past working as a chemist +20 years ago. it could be, but i’m not entirely convinced. thanks to many encouragements we’re in the process of getting other opinions, though i’m quite worried she’s reached a too advanced stage that it’s too late at this point. it’s also difficult in that, currently, she isn’t in any condition to travel if we found a suitable option outside the city. 

 

On 8/20/2021 at 6:07 PM, Tom Galli said:

Hope,

Oh my!

I wonder if your mother's had a consultation with a radiation oncologist. Some today are treating multi-focal tumors with precision radiation. While not a standard of care, some radiation oncologists are stretching to zap multiple tumors with curative intent. 

This treatment worked for me, saving my life when chemo would no longer work on my squamous cell lung cancer. You need to find the right practitioner but people in the LUNGevity community have had multi-focal precision radiation with positive results. Let us know the city and country your mother lives in, and I might be able to suggest a radiation oncologist.

Stay the course.

Tom

i’m so glad that it’s worked for you! she received palliative radiotherapy - just five fractions because they said at her stage radiotherapy would not cure the cancer but can alleviate the extreme pains she was going through (and it did a little over a month later). five fractions didn’t feel like enough in my opinion, but i wasn’t in a position to argue about it at the time unfortunately. 

that sounds great, actually! but i don’t prefer sharing where i live publicly. if you don’t mind could we communicate these details via the forum’s messages? 

[catlady91]

Hi Sunny Hope I'm so sorry to hear that you're going through this. How frustrating that the doctors seem to have given up. I would definitely seek another opinion and transfer to a different doctor. 

I know that decisions about treatment are based on performance status (whether or not the patient can go about their daily activities with much difficulty and what other medical conditions affect their life). Your mom being on oxygen and having had pneumonia have probably played a role in the treatment decision. Maybe they feel like aggressive treatment will be too much for her to handle. 

I'm not a doctor though and I would definitely seek another opinion if I were you. Perhaps they can get your mom's general health better before any treatment. I do think that one radiation treatment is not enough to see change. Usually it takes many sessions to see shrinkage so I don't know why they've give up. My mum had six weeks radiotherapy and even then it shrunk by half. Luckily the tumour disappeared completely but my mum was told that the tumour keeps on shrinking after radiotherapy as well and there's  a lot of inflammation which makes it look bigger. My mum was initially upset because she expected it all to be gone but the doctors reassured her that it's excellent and the tumour will keep on shrinking and after a few weeks it shrunk completely. 

I really hope that you can find another opinion and a doctor who doesn't give up on your mum. I live in the UK where it's much harder to get a second opinion and it's harder to change doctors (though my mum luckily managed to change doctors because she had two awful ones, but her doctor now is fantastic). In the US I hear it's common practice. 

Good luck and let us know how you and your mom get on.

Monica xx

[catlady91]

Also getting a biomarker test done is a good idea. Squamous cell which is what my mum has is almost always caused by smoking. My mum was a heavy smoker for 40 years though luckily she quit 15 years ago. Lung cancer can also be caused by passive smoking. Was your mom around people that smoked? I don't know though if squamous cell is only caused by smoking or passive smoking as well. Squamous cell doesn't have many mutations but you never know.