catlady91

Hi Christine please don't feel guilty. Cancer is a huge shock and life changing event regardless of stage. It brings with it the same fears and emotions. Luckily advances in treatment have come so far that there are success stories of many people with stage 4 lung cancer. There's hope and treatment at every stage. Yes the higher the stage, the more the cancer has progressed but no stage is hopeless. Also the stages are used to guide treatment for example treatment for stage 1 is different from treatment for stage 3. Most people with stage 3 aren't candidates for surgery. My mum was diagnosed with stage 3B and she couldn't have surgery but she had radiotherapy, chemo and immunotherapy and she's been NED for over 2 years. She has her routine scan next week so fingers crossed that she's still NED.

Sorry I'm late to this. Lung cancer with mutations is treated differently to lung cancer without mutations (pdl 1). LC with mutations tend to be treated with targeted therapies and those without mutations and who have a certain level of pdl 1 are treated with immunotherapy. I don't think that immunotherapy is effective for LC with mutations and vice versa. My mum was treated with immunotherapy as she didn't have any mutations. I'm not sure which has a better outcome - LC with mutations or without. I've tried to research it but there's not much info. The most important thing to remember is that treatment has come a long way and there's different but effective treatment for whatever type of lung cancer you have. Both immunotherapy and targeted therapy can be extremely effective. Lung cancer is no longer treated the same way as in the past which was a one size fits all treatment. Now we know that lung cancer is not one disease, but there are many diff aspects that require different treatment. Stay positive. The most important thing to remember is that there have been major advances in treatment and there are many treatment options.

I also thought I'd add that's there's no clear test to see whether immunotherapy is working or not other than the cancer getting worse (excluding pseudo progression). Immunotherapy is a fairly new thing and unlike chemo and radiation it can take some time to see if it's working like it did with my mum.

Hi JJFrank, Welcome! I'm so pleased to hear that you're doing well and responding so well to immunotherapy. You were diagnosed exactly the same time as my mum and she's also doing really well (touch wood she continues to do well). My mum was diagnosed with inoperable stage 3B squamous cell carcinoma in Feb 2020. She had intensive radiation and chemo followed by durvalumab (aka Infimzi) May your fantastic response to treatment continue. You are doing great! Monica xx

Hi there Lilly, I would wait until you speak to your oncologist especially as a lot of reports use medical jargon that non-medical professionals don't understand. Many times I've read my mum's reports and have gotten into a panic. One doctor even put that my mum had metastatic cancer (it was confirmed by the oncologist that it was a mistake on the letter and my and that my mum is indeed stage 3 not stage 4). I read my mum's other medical letters and would research the things that I didn't understand only to get more het up, confused and panicked. Don't too much into read into the results. Unless you are a medical professional skilled in that area, you won't know what these results mean. Only your oncologist can interpret these results. Also with immunotherapy, there is something called pseudo progression. My mum was told that the cancer "returned" after around 5 or 6 months starting durvalumab but they mistook the inflammation for cancer on the PET scan. The CT scan showed nothing in my mum's lungs and further testing concluded that there was inflammation not cancer. Try not to worry and get too worked up. I know it's easier said than done. I've had my fair share of panic and fear reading medical letters. They really don't make these letters and results easy for a lay person to interpret. I would speak to your oncologist or a medical professional. Monica x

It's understandable that Justin feels depressed and deflated, but it's normal. All cancer sufferers are faced with the idea of death (even if the cancer is not terminal) and it's terrifying. My mum felt the same way. She was terrified and scared but it's just the shock and the fear. Treatment for lung cancer has come so far. There's been so much progress made. It's no longer a death sentence. Even my the doctor who diagnosed my mum said that 10/15 years ago it would have been very bad news for her and she would only be offered palliative care but now treatment has come so far. There are people with stage 4 who have been living with cancer for years and are thriving. When mum was first diagnosed I knew absolutely zero about cancer- for me it's either something that's curable or terminal. I couldn't have ever imagined that people could live with cancer. Justin has every reason to stay positive. Xx

I'm so pleased to hear that you have some positive news Justin. EMandM is right that the NHS wouldn't bother spending money on treatment if they didn't think it could be successful. The fact that the doctors say that the results are way better than expected is fantastic. Good luck with the gamma knife treatment. Keep us updated x

Justin please don't give up the fight! Attitude is everything. Strength of mind and body and positivity is important. You are you, not a statistic. If someone tells you that you're a failure and you can't do something, do you listen to them? No! Never let anyone or anything hold you back and take your fight and strength away. After each knock pick yourself up and think, I can do this. There are lots of long term stage 4 survivors here who are not only surviving but thriving. Treatment has come a long way and new treatments are being discovered every day. Chin up! You can do this. I sent you an email by the way.

Don't trust everything that you read online. Most of the articles are outdated. Online it says that stage IIIB lung cancer isn't curable yet my mum was given curative intent treatment! A lot of the articles online are from several years ago and don't take into account new treatments. Survival rates are improving all the time. I would look at more updated and recent studies that show the results of new treatments and the results are very promising with many people living longer. New treatments have been a game changer and have contributed to increased survival. There are a lot of positive stories out there. If you give me your email, I can send you some.

Fingers crossed Justin 🤞🤞.

There are many success stories out there. Don't lose hope Justin. Lung cancer survival is improving all the time and there are so many new treatments. I remember you saying previously that one of the doctors spoke to you about targeted therapy before the mets were diagnosed. Do you know if you are eligible for targeted therapy or immunotherapy?

Wow this oncologist can't make up his mind. There are some doctors that are more pessimistic than others. I really didn't think that they gave prognises anymore unless someone is in a really bad way and the cancer is too advanced for treatment other than palliative. They never gave my mum a prognosis though one doctor said her cancer was incurable and her oncologist gave her treatment with curative intent. My mum had an awful oncologist before her current one who is amazing. He was so negative and didn't seem to know much about the latest treatments or clinical trials. If you're unhappy with your oncologist, switch to a new one who will do his best to get you the best treatment. I also remember I spoke to this awful McMillan nurse when my mum was first diagnosed and she said that people with stage IIIB lung cancer usually only live for six months. Well it's been 2 years and mum is NED 😂. Our old cat was diagnosed with two brain tumors and gave his two months, three max but he lived for over three years which is like 15 years in human years!! He was an old cat- he was almost 20 when he died! My point is that no one knows how long anyone will live. It helps to be your own advocate. With my cat the vet and family members said to put him down during those 3 years but he was still happy. We only put him down because towards the end he was really suffering and we knew it was his time. Keep your chin up. Treatments have improved a lot over the past few years. Find an oncologist who believes in you and is up to date with the latest treatments.

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.

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?

RIP Teri. I'm so sad and shocked to hear that she passed. She was such a positive person who had a huge presence on this forum.

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?

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!

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

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

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.

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

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.

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

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