Hello everyone

[Aurora]

Hello everyone, I'm 32 years old. My mother recently received the news that she had several masses in both her lungs. They ran a bunch of tests on her earlier this week and she is scheduled to go in on Saturday to discuss the next steps. I can tell she's afraid but she's putting on a brave face. I cant tell you which one of us is more freaked out about this all. She hasn't even had a biopsy yet or anything. I don't know what will happen next it feels so unreal yesterday we were talking about traveling to Costa Rica together and today the future seems so uncertain. Are there any positive stories out there to get me through these coming days of uncertainty? 

 

[Justin1970]

Hi aurora welcome to this site what you have been told is so hard to process I feel so sorry for your mum you and your family please try and stay as positive as possible it will be hard my family and me are going through exactly the same and it is very easy to let it consume you, I am really struggling with my diagnosis but my family are being my rocks and strength at the moment I am trying to get some strength in my heart to fight this for them but the tablets I am on are making me have some terrible thoughts of survival rates, you will probably look on the Internet but please try not to it hasnt helped me in any good way goodluck with everything and I hope you get some great news and hope 

Take care 

Justin x

[RJN]

Hi Aurora,

I am sorry you have to be here, but for what it is worth, it has definitely helped me through the most difficult times and made me realise that even advanced lung cancer need not be a death sentence. I was diagnosed last year at 49 with stage 4 adinocarcinoma and metastases to the adrenal gland. But I have now been through immunotherapy and radical radiotherapy and all signs are positive (touch wood) that the disease is on retreat.

At a practical level, a bronchoscopy (biopsy) will be the most important first step. It’ll tell you what type of lung cancer your mum has, as well as important genetic information which the medical team will use to determine the best course of action. This will likely be chemo, immunotherapy, targeted therapy, radiotherapy, or a combination of these. The wait for these result can be quite long, and it is one of the most frail time for everyone, but once you have your mum’s plan and start treatment many feel a bit reassured. As Justin mentions, forget Google. Most stats cover patients who were diagnosed 5-10 or more years ago, before a heap of new advances came through, so they really are unhelpful. 
 

All the best and keep us posted, Rikke

[LouT]

Aurora,

Welcome to our forums.  You've already received some very good counsel so I'll make this contribution short, but (hopefully) helpful.  One of our senior members wrote a piece titles "10 Steps to Surviving Lung Cancer; by a Survivor" and it can be found here.  

In the meantime I'll give you three bits of knowledge:

1. Don't start searching Google for prognosis data.  It presently is a 5-year average that does not take into account advances made in the last four years (and there have been many).
2. Make sure you ask all the questions you can of your doctor so you'll understand fully: the diagnostic procedure, recommended treatment as well as any alternatives.
3. When a biopsy is done request biomarker study to determine if any immunotherapy or other therapy would be advantageous to your mom's treatment.

Be strong for her, if she wants to talk just listen and fight the urge to calm the very real feelings she is going through.  Rather talk about getting the diagnosis, treatment plan and follow ups as they are things that can bring hope to her.  We look forward to hearing more from you and maybe even your mom.

Lou

[Karen_L]

Aurora, 

So sorry to hear what your mom and you are going through. I want to encourage you to seek some support from a counselor, of course for her, but definitely for you. I see someone once a week so that my family doesn’t bear the whole burden of my support and it helps me feel like I am supporting them by taking care of myself. My mom has been speaking with someone and that has helped her.  Your cancer center can probably steer you to someone. 

Best of luck, and welcome. 
 

Karen

 

[LouT]

Aurora,

Karen raises a real issue "caregiver support".  We also have a forum called the Caregiver Resource Center and it can be found here.  

Lou

[Tom Galli]

Aurora,

Lou quite properly points to the inaccuracy of statistical survivor projections as not inclusive of new treatment methods. But there is another reason that may be more profound for inaccuracy: an incomplete statistical record.

On diagnosis, we become a pretty accurate statistical input datapoint. Known are age, sex, type of lung cancer, diagnostic stage, race, and location. These diagnostic inputs populate the US National Institute of Health (NIH) statistical database. However output  in terms of cause of death is not well reported (one could be hit by a car, suffer a heart attack, or pass from another unreported comorbidity). In fact, death itself by any cause is mostly unreported. Further, survival is mostly unreported. So the database has good information on diagnosis but almost no information on prognosis. Once one becomes a NIH statistical record, the system presumes a cause of death as lung cancer. This causative bias creates most of the inaccuracy and when we google it-up, heightens fear.

Statistics is a dry and complicated academic topic. But it is the foundation for almost everything predicted in our modern world: inflation, climate change, election results, medical trials, and of recent concern COVID outcomes. And as a science in itself, it is not well understood by those making or citing a statistical-based claim. [Warning--the next paragraph gets complicated]

Predictive statistics can be quite accurate. Consider concrete. I can perform a Design of Experiments--a predictive statistical model--on the strength of concrete altering only the water-cement ratio. Concrete is but 4 components: Portland cement, fine aggregate (sand), course aggregate (gravel) and water. My experiment can precisely control the weight of Portland cement, sand, and gravel as well as environmental factors like temperature and vary only the weight of water. Cylinders of concrete each with a different water-cement ratio are then broken in the laboratory after identical cure times (28 days) and a yield strength (a precise outcome) is actually determined. Given I test a calculated number of cylinders, and I calculate the experiment's p-value (warning--deep geek speak), I can accurately predict the strength for various water-cement ratio recipes without performing a laboratory experiment before each job. In fact, civil engineers look-up water-cement ratios to specify concrete end-strength for everything we design. This table results from a design of experiments (maybe first performed by the Romans). But, notice my mention of precise control of variables, calculation of cylinders, and experimental p-value. The rigor of a predictive statistic depends on exacting input and output variable control and calculation.

But we are not concrete! Survival statistic input variables are mostly controlled, but outcomes are not known and therefore are suspect predictions. Lung cancer survival statistics reported on Google and elsewhere are inaccurate. Doctors and scientists understand the inaccuracy, but search engine clicks and media sensationalism hype fear when hope and understanding are necessary.

This is a long winded explanation but one necessary to inform our community of survivors who read about fear and mayhem and believe it. Indeed, "hope is a good thing", and there is much to be hopeful about.

Stay the course.

Tom

 

 

[LouT]

Tom,

This is the best definition on Statistics for our disease that I've read.  You need to put this into a blog (if you haven't already) so we can share it with folks.

Lou

[Tom Galli]

Lou,

I have a blog on Statistics, here. 

There are 3 problems with Statistics and they are universal, regardless of the topic predicted. These are:

• Many treat a statistical projection as an "absolute certainty." All projections are educated guesses!
• Few understand the mathematics underpinning the predictive science.
• Few understand the limits of a statistical projection.

We are surrounded by statistics generated headlines, for example: "Scientists project the earth will warm by 5.8-degrees Fahrenheit by 2100." Project based on what is the operative question. This projection is based on a statistically generated climate model that has a disclosed error rate and limits on the projection. Yet these factors never make the headline and almost are never discussed in the article. Journalists characterize that level of detail as too difficult to explain or understand. But, people believe projections. And people, companies, and nations are making decision based on a projection almost no one questions or understands.

"Tomorrow's forecast is a 65-percent probability of rain." What does that really mean? What are the limits of the forecast? Are there geographical exclusions? We hear or read the forecast and believe it is going to rain tomorrow. Do we even ask why it didn't rain when the forecast fails to deliver?

"Ninety-seven percent of the time, chemotherapy doesn't work." “If every girl in this country took 200-micrograms of Selenium, in one generation, we’d eliminate breast cancer by 82%." 

No one knows how much time any of us have left in this life. Far better to focus on living well the life we have.

Stay the course.

Tom

 

[Aurora]

Thank you all for your helpful information and resources. I feel a bit more hopeful and prepared to face the coming days, whatever they may entail. Best of luck to all of you on your journeys as well. I'm glad I found this forum!