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Just diagnosed and absolutely devastated


LilyMir

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Hi everyone,

Today, while with my 5-year old at his paediatrician appointment, I got the call that my bronchoscopy biopsy was positive for NSCLC. In a moment, my whole world came crashing down. I am 49, never smoked and lived a life of healthy eating and being so the devastating news is making me completely numb.

Respirologist says so far it looks it did not spread and they want to do a surgery to remove half my lung (PET scheduled on April 8, which seems years away in my mind). What hurts even more is that we now know that the nodule was visible and much smaller on a MRI scan I did 4 years ago (incidental finding that the radiologists ignored!).  

How do you handle the grief and worry when you have small kids? I feel like I am floating in a nightmare.

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Dear Lily,

That is so very rough, and the place you are at right now is possibly the worst part - the shock and uncertainty are really heavy. I can understand the anger and frustration that it wasn’t caught when it should have, and I am hoping for you that you are at an early stage, but regardless, do know that a lung cancer diagnosis (any stage) is not an automatic death sentence. As you browse here, you will find many long-term survivors.

I am 49 and was diagnosed with stage 4 NSCLC in August of last year. I have since been treated with immunotherapy and radiotherapy, and my everything is going in the right direction so far, to the point that I actually have some hope to beat this thing.

But more importantly, I have been physically pretty well throughout the whole ordeal, and mostly managed to enjoy life as normal. A few weeks/days I have been tired and aching, and I’ve struggled a lot with the grief of my friends and family which has been a big mental burden, but life has been pretty good and I have become used to thinking of myself as someone with a chronic rather than terminal illness, I don’t have kids, so I cannot imagine the weight that adds to the situation. I know there are a few here with young children, so hope they will chip in.

Meanwhile, you’ve come to the right place for support and advice. So much wisdom and knowledge from the folks here.

keep us posted and come here anytime. Rikke

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Lily,

Sorry you have to be here, but glad you found us.  While this can be a devastating time and we all understand very well what you're going through you are no longer alone in your journey.  As far as not smoking; "all you need to get lung cancer is lungs".  Sure, most cases are former smokers, but there is a substantial minority  that are "never-smokers".   The good news is that LC is not the automatic death sentence it used to be as there are more treatments online in the last 5 years than the previous 50. 

You don't mention the actual diagnosis stage and if any biomarkers were done.  An article on Lung Cancer Staging can be found here.  The diagnostic period is always filled with dread and anxiety and everything seems to move in slow motion.  My LC was discovered early in 2019 and I had surgery (lower-right lobectomy) and have been NED (No Evidence of Disease) ever since.  You'll hear from others like RIkke, who have gone through this and you'll hear from a number of others stories of hope and overcoming with many of these folks also being NED for years.

In the meantime, there is an article I would suggest you read.  It's called "10 Steps to Surviving Lung Cancer; from a Survivor" and it can be found on this page.

Please stay in touch here.  You'll gain great knowledge and support from our Lungevity Family.

Lou

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Hi lily 

I'm so sorry for your news and that you have to be here, it really is a hard thing to come to terms with but you will find an inner strength and the will to fight, I was diagnosed last August with stage 3 lung cancer and had chemotherapy and radiotherapy which did work in shrinking the tumor, unfortunately last month I had a seizure which revealed 2 small brain mets I had gamma knife radiosurgery done last Thursday and I'm now hopeful of getting all of this under control I also felt completely devastated and very depressed but I have definitely turned a corner as I'm sure you will once you get your head around it all, I really do wish you the very best please stay as positive as you can  

Take care Justin x 

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Welcome Lily,

As Lou points our, only lungs are necessary preconditions for lung cancer. Radon gas exposure over time is a cause of lung cancer. Here is information I found about radon concentrations in Vancouver, BC. If your home has a basement, do have it checked for Radon gas. Lengthy exposure to Radon is dangerous for anyone, especially young children. Here are examples of kits that can be purchased and used to check your home. If gas is found, remediation is pretty simple. A small fan is installed in the basement to exhaust air to the outside of your home. Homes without basements are not as likely to be affected by radon gas accumulation.

You've not been staged so I think surgery removing 1/2 of your lung for a single nodule is a premature call. More likely, if surgery is warranted, a portion of your lung might be removed. This explains surgical techniques often used in treating lung cancer. Read the material in particular associated with the question: "What are the types of surgery used in lung cancer." I'm sure the scheduled PET scan will clarify the type and extent of surgery. Eighteen years ago, I had my right lung completely removed for a very large tumor in the main stem bronchus. I also had a recurrence (several in fact) in my left lung after recovering from surgery. I have about 30% pulmonary capacity but that hasn't limited my life activities. 

How does one handle grief and worry? My suggestion at this juncture is to wait until your diagnostic workup is complete. If you have a single metastatic nodule, surgery can be a very effective way of resolving your lung cancer. You might indeed be a "one and done" patient. Let us hope so.

Stay the course.

Tom

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Thank you all who responded and the encouragement and info. I am still in utter shock, going between disbelief and uncontrollable sobbing when I hug my sleeping boy.

So far my respirologist only told me that it is one nodule ~2.7cm on top of left lung, no evidence of spread yet. It is Adenocanceroma. When I asked if they tested for mutation, he says too early, you will have surgery. I am not sure why they can’t do both. I assume he means I have a chance to remove the cancer but I don’t trust them. I spent 4 years believing my last scan was normal when they mistakingly ignored the same nodule at half it’s current side.

I have yet to meet the surgeon and hope the wait won’t be horrendous. I will ask him including reiterating that my liver had a 1 cm solid mass recently but doctors dismissed it as benign after a contrast MRI (my liver enzymes have been a little above normal for years since giving birth).

The loss of trust in radiology is really making thing much worse for me. When the respirologist said we aim to cure this, I have no confidence in that anymore. Feeling so helpless and distraught but trying to keep it together to start the fight. 

 

 

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Hi Lily,

Not that I pretend to know more than your doctor, but like Tom points out, it does seem odd that they are planning surgery before having even a PET scan, which is where you would typically see if there is spread. For me (and many others here), the sequence seems to be 1. CT (to identify possible lesions), PET (to determine spread), bronchoscopy (to determine type and mutations) and then a treatment plan based on these factors. I also find it very odd that they have not used your bronchoscopy to determine your mutations. Of course, it could be that they are just super confident that there is no spread, so rushing to do the surgery to avoid this happening. I am not one to second-guess the oncologists, but hopefully we can help you ask the right questions. 

All the best, Rikke

 

 

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Hi Lily,

I’m sorry you find yourself here in the club no one ever wants to join.  Like you, I was 51 old-never smoker when I was diagnosed with Stage IV ALK Positive.  The likelihood that you have a mutation is very high particularly since you are under 50.  We all know biomarker testing in the early stages saves lives. Particularly since “mutant cancers” have a high recurrence rate.  I share this not to upset you but to provide you with the best information to advocate for yourself within your national health system.  Informed patients live longer.  

Initially when we hear the words lung cancer everyone is terrified because we’ve been trained to think this is a death sentence when in reality there are many of us living for years due to the many treatment advances. 
 

Like you I suspect the cancer went undetected for years by my doctors.  That was almost four years ago and today I remain no evidence of disease.  
 

Let the tears come and it’s okay to be a mess, brighter days are coming and we’ll help out as best we can along the way. 
 

Michelle

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