[Justin]

Lou is right, don't give up hope. I think that all people with cancer have thoughts of and fear of death. It's a shock but it doesn't mean death. There are so many new treatments available and there are many people who are living for years with stage 4 cancer. I follow this woman on Instagram who was diagnosed with stage 4 bowel cancer and had around 17 tumours around her body at the time of diagnosis and over 5 years later she's still alive. She almost died but she defied all odds.

You mentioned that the doctor was happy with the size of them so they must think it's very treatable. I've heard that brain mets can easily be radiated. Lung cancer does commonly spread to the brain. Did you have a head CT whilst you were being diagnosed for cancer? They gave my mum a head CT on top of a PET and chest CT.

[Justin]

8 hours ago, Justin1970 said:

Hi I'm going to see the oncologist today just hoping there is something that can be done, looking online it doesn't look to promising but not much I can do really just pray there's something they can do 

Don't rely too much on what you read online. There isn't a lot of information about the advances in treatment. It's the same with survival statistics- most of them are heavily outdated and don't take into account treatment advances. How large is the brain mets?

[Justin]

I'm so sorry to hear this Justin. Hopefully the mets are small and can be dealt with with radiation. I don't have any experience of brain mets but I've heard that they can be successfully treated with radiation. What else did the doctor say?

[Justin]

Hi Justin, I hope you're doing well and had a good Christmas. Having a mutation isn't really good or bad news; it just helps the oncologists to decide what treatment plans are and aren't suitable. Luckily there are lots of new targeted treatments for mutations. It's good that the oncologist doesn't think that you need the treatment at this moment, but it seems like the treatment is an option if the cancer was to return (hopefully it won't but it's good to know that there are options). I wish you a happy and cancer free 2022! 

[Justin]

I think it's worth asking and exploring what further options there are. It's good that the oncologist is happy with the treatment though. I think it's always good see what else is available so you have more options and are more informed about your illness as you can xx

[Justin]

My mum also had burning after radiotherapy and she only had two rounds of chemo. She was meant to have an extra one but they decided it wasn't necessary. 

Well done for finishing your treatment and sticking with it. Apparently not everyone does and when my mum was undergoing treatment one of the nurses told her that not all patients stick with it and give up treatment.

I read that you're not eligible for immunotherapy. Do you know if they want you to try any targeted therapy instead? 

Monica x 

[Justin]

I'm glad that you're well enough to go ahead and that the chemo is bearable. Everyone reacts differently to chemo. My mum tends to have a lot of side effects with most things. She found the immunotherapy side effects tough too but some people get few or little side effects on immuno. Mum has her scan coming up next week so I'm feeling really nervous. I think I worry more than mum about it. She's been fine health wise so pray to God she's still NED. 

 

[Justin]

Hi Justin, sorry to hear that your white blood cell count is low. I think it's normal that chemo depletes your body. My mum had an extremely low level of magnesium after chemo to the point that she had to be hospitalized. Luckily she pulled through. More amazingly that after all the treatment that my mum recieved, her blood results were completely normal.

How are you tolerating treatment so far? It's a rough ride but stay strong. Hopefully the blood transfusion will make your body stronger and you'll be able to resume treatment. Mum found the chemo hell but the radiotherapy wasn't as bad. She still had side effects but they weren't as bad as chemo. 

As for the biomarkers test, maybe they already did it. In my mums papers they wrote her cancer subtype and EGRF wildfire and PDL1 80%. I had to Google what it all meant but those are the biomarkers. You mentioned that you'll be having immunotherapy so it's likely that they've already done the biomarkers. They wouldn't be able to do the immunotherapy without knowing. Best to ask your oncologist though. I find in the UK, doctors don't really explain anything to patients. My mum always writes down questions to ask when she has an appointment. 

Thanks for keeping us updated. I'm wishing you lots of strength. Please stay in touch and keep on updating us. 

Xx 

[Justin]

On 10/9/2021 at 8:47 PM, Justin1970 said:

Hi thanks for the reply, the radical treatment does sound a bit daunting how was your mum through it, I'm glad she is NED that's brilliant you must all be so relieved, i think being told you will be treated with curative intent really does help with the anxiety and overall mental stress,take care.

Many thanks Justin xx

I won't lie the treatment was tough for my mum as she had a lot of side effects and unfortunately some of them are long lasting but generally now her health is really good. However, it doesn't mean that you will have lots of side effects or will struggle with treatment. Each person is different and the oncologists wouldn't be giving you such radical treatment if they didn't think you could handle it. Unfortunately some people are too unwell, too weak and too frail for radical treatment and are given only palliative treatment. The doctors said that my mum was/still is in extremely good nick for her age.

I wish you all the best with your treatment. It sounds daunting but stay positive and think that this treatment is killing the cancer. No pain, no gain. I agree that being told that the treatment is with curative intent is a lot more hopeful. The first doctor (who wasn't the oncologist- he was the lung specialist) said that my mum's cancer is treatable but not curable which was very hard and bleak news to hear but the oncologist told us that my mum's treatment is with curative intent which made us feel far more hopeful. Of course cancer that isn't curable isn't necessarily a death sentence these days. It seems in the US some doctors are of mixed opinion as to whether cancer is "curable" and some don't use the word "cure". Some people on here, even long term survivors don't like to use the word "cure". 

 I hope you have supportive friends and family around you to help you get through treatment. And of course you always have us. Keep us posted. 

[Justin]

Hi Justin, I'm sorry to hear that the diagnosis is lung cancer but on the bright side, the treatment plan is with curative intent which is great. You're probably going to have the same treatment as my mum had. My mum had radical chemoradation followed by immunotherapy. My mum is currently NED (no evidence of disease). I agree with the others that having a treatment plan helps to take away the anxiety. Stay positive and keep us updated xx 

[Justin]

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