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Justin


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Hi my name is Justin I'm 50 years old and I'm from the UK, I have recently be diagnosed with lung cancer and I am waiting for tests to see if it's spread to the lymph nodes in my chest, I'm really struggling at the moment and wondered if anyone had any advice on how to process this many thanks in advance 

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Hi Justin,

Welcome to the club that nobody wants to be a member of.  Let me first tell you something you need to hear; "Lung cancer is NOT the automatic death sentence it once was!".  We have members here with as much as 16 years since diagnosis with cases starting in Stage 3.  Now, the other thing I can tell you is; stay away from Dr. Google, it is not your friend and the data they use is averaged over a 5-year period so it does not reflect what is happening on the ground right now, today.  We all have a lot of experience to share with you and will be happy to answer your questions.  Just know that from now forward You Are Not Alone. 

One of our leading members wrote an excellent treatise called "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find that here

As you learn more of your diagnosis and develop questions please share them here and we'll provide the best responses that we can for you.  Receiving a lung cancer diagnosis is overwhelming, but do your best to stay calm and focused on learning more about this disease, spending some time here and getting involved with your treatment team.  Also, if a biopsy is taken (surely it will be) you need to advocate for biomarker testing to see if there are any genetic anomalies that would make you eligible for immunotherapies now or in the future.

Hang in there, and I look forward to hearing more about your case and any questions you have.

Lou

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Hi Justin, I'm sorry to hear about your diagnosis but happy you found this wonderful community. Here is some information on navigating your diagnosis: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis

Have you had biomarker testing

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Hi thank you for the replies, I am waiting for the PET SCAN and biopsy at the moment as soon as I have had them done I will let you know, i have had a CAT SCAN and been told it's in my right upper lung and possibly the lymph nodes in my chest, many thanks Justin 

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Hi, Justin, and welcome. I'm curious--if you haven't had a biopsy yet, how is it you've been diagnosed with lung cancer? Generally, a biopsy is necessary to diagnose, though nodules may be suspicious for cancer. I had a nodule that had grown and developed a spiculated appearance, which made it suspicious, but the cancer could not be confirmed until the pathology results came back after surgery.

Good luck--hopefully if you do have lung cancer it will be early stage, though all stages are treatable.

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Hi thank you for your reply, after the CAT SCAN the Dr said it was lung cancer in my right upper lobe and possibly in my lymph nodes in my chest as they were swollen, I am waiting for the PET SCAN and biopsy but haven't heard anything yet, I had a lung function test today and an MRI scan scheduled for next Tuesday many thanks Justin 

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OK, all due respect to your doctor, but to my knowledge (and I've been dealing with lung cancer since my first diagnosis and surgery in 2017) lung cancer can't be diagnosed without a biopsy. There may be strong suggestions that that's what it is, but it can't be definitively diagnosed from a CT scan. Your doctor certainly might be right, and it will turn out to be cancer, but I'm just suggesting you not get ahead of yourself. The PET CT will provide more info, but you really need the biopsy to know what you're dealing with. 

Anyway, glad you have all those tests lined up. You'll find out, if you're around here for any length of time, that it pays to take things one step at a time. The waiting for tests and results is one of the hardest, most frustrating aspects of this whole deal. But learning to be patient and not get carried away will be good for your mental health. :) 

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Hi Justin,

I was diagnosed with lung cancer at the age of 51, three years ago.  I’m grateful for all the research as I’ve been in remission for almost two years now.  There is life with lung cancer, it’s a roller coaster in the beginning for all of us.  
One of the books I read early on was written by long term lung cancer survivor, Greg Anderson: Cancer- 50 Things to do.   For me it was a good road map on how to sort through the chaos and find a way forward.  
Anyone with lungs can get lung cancer… as Lou said, no one is alone here.  Step by step we will help you find the brighter days ahead. 
Michelle

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I was actually diagnosed with lung cancer in October 2019 based on a CT scan. At the time, my PCP told me it's not a death sentence anymore. It wasn't until after a bronchoscopy that the biopsy indicated adenocarcinoma and biomarker testing showed an EGFR mutation. I was staged at IIIB. So I understand getting that shock of a diagnosis, but try not to panic if you can. Stay away from Dr. Google. I'm on a targeted therapy (a pill) and have been NED (No Evidence of Disease) since April. Please let us know what your testing reveals. 

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Hi I just wondered if anyone here knows if the lymph nodes in the chest hurt, I have a pain there but i think i only really felt it when I got diagnosed, I'm not sure if a lot of my feelings are anxiety, I have no breathing problems at all and I never really cough or get out of breath when I do stuff but now I think everything hurts and I can't breathe very well, I feel really low to the point of thinking I will never be happy again does anyone know if this is normal many thanks 

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Is it normal to be stressed out and a little bit nuts when facing the prospect of lung cancer? Sure is.

Enlarged lymph nodes rarely cause pain. In rare cases, there could be pain if a nerve is pressed against, but you'd know if you had a lymph node that big--it would have shown up on the CT scan. 

And anxiety can definitely constrict your breathing. Listen, I have Stage IV lung cancer, had one lobe removed, and haven't had any breathing problems, other than those related to my treatment I just finished.

Do your best to relax, and wait till you have more information. I know it's hard not to get carried away, but seriously, it doesn't help anything and will just make you miserable in the meantime.

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I had cancerous lymph nodes but no pain in my chest at all. If the anxiety becomes overwhelming, ask your doctor for a prescription to help you cope. Hang in there. Believe it or not, it is possible to live with lung cancer and be happy. 

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Hi Justin, I'm from the UK as well. My mum was told she had lung cancer before they did the biopsy- it seems to be common practice in the UK. It turns out they were right anyway. As difficult it is to process a lung cancer diagnosis it's not all doom and gloom. Do not believe everything you read on the internet- the statistics are outdated and so many treatments have been approved for lung cancer over the past few years. The very first consultant told my mum that 10/15 years ago her prognosis would have been very poor but nowadays treatment has come far. My mum was diagnosed with stage 3B lung cancer in Feb 2020 and now she's currently NED (no evidence of disease). Her oncologist thinks that she's in an excellent state and mum is currently away on holiday enjoying life! Mum is 72 but they gave her the most aggressive treatment plus immunotherapy.

Don't lose hope. This is a fantastic site. The people on here are so positive and helpful. There are people on here who have been living with stage 4 lung cancer for years. Positive attitude is everything. It's as scary as hell when you or a loved one is diagnosed but it gets better. I was so terrified and scared. I saw cancer as the ultimate death sentence but nowadays it's not. Treatments for cancer especially lung cancer are getting better and better.

Please keep us updated. We are here for you. This group really lifted my spirits and gave me hope in my darkest days so stick with us. We're going through this journey together. Make sure that you are an advocate for yourself and find an oncologist that you trust and believes in you. My mum had some awful doctors but her oncologist now is amazing. In the UK it's not as common to get a second opinion or switch doctors but if you're not satisfied with the doctor or their care and attitude, don't be afraid to fight and switch to another one.

All the best. The first part is scary but the storm will finally blow over.

Monica xx

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Hi Monica thank you for your support this forum definitely helps, I will be glad when all the tests have been done and they hopefully start the treatment I know I have to stay strong but it really is hard at the moment, when I know more I will let everyone know many thanks Justin x

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Hi all I've had a lung function test and an MRI scan done but I'm still waiting for the lung biopsy and pet scan, I guess i have to wait for results when all the tests have been done as haven't been told anything about any of the tests yet, hopefully everything will be explained fairly soon, many thanks Justin 

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Justin,

Michelle nailed it!  The waiting seems interminable, but will be over and once you are fully diagnosed and a treatment plan is laid out you will certainly feel some sense of control returning to the situation.  Hang in there and stay strong.  You can do this.

Lou

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Thank you, this is a really hard thing to swallow yet everyone on here seem so brave in comparison to me I really wish I could get some strength from somewhere I feel so hopeless to my family because they are all trying to be strong, I have started some tablets which hopefully will help the anxiety and some sleeping pills so fingers crossed thanks Justin 

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Thanks lou I will, just a quick update the MRI scan on my brain has come back clear of any spread so that's good, I have a PET scan booked for Tuesday and then I'm just waiting for the biopsy hopefully that will be soon thanks 

Justin 

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Hi Justin,

Just posted my own introduction, and also in the UK and of a similar age so thought I would reach out. The waiting is awful - I first went to my GP in June, and although I have done the bronchoscopy and have a diagnosis, I am still waiting for my treatment plan. Like you, I got an interim diagnosis of lung cancer based on the initial CT, so I think that is how they do it here. They did mention a small chance that it was bacterial, but they were careful not to give me too much hope. In a way, I am glad as it gave me time to process before I got the final “judgement”. And yes, you are likely to have phantom pains - I am sure I can feel my small tumour (only 2.6cm)… But I reckon it is unlikely.

anyways, here is to us and the NHS! Rikke

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