Pancoast/apex tumor

Hi Ginifred, sorry to hear your news.  The early days of tests and being diagnosed is so very scary. I know for myself, I found the whole process very overwhelming. There were so many tests that needed to be done, and the whole time I was being sick with worry. I lost a lot of weight at this time, just because I couldn’t eat. I had teenage children myself, so it was very hard to try and keep anything from them. 

My lung cancer is a sarcoma which has spread from my womb. I have been living with it in my lungs now for 7 years. One thing I will say is please do not google anymore. Although the internet is a great source of quick information, it is very outdated. There are so many new treatments for lung cancer, and many of us are living much longer lives than google tell us. 

We are here if you need to chat at anytime. Sometimes just putting our thoughts into words and hitting that send button, does really help. But if you need to talk to someone please do call the Macmillan support line on 0808 808 00 00. They are there 7 days a week from 8 am until 8pm. 

Hi Ginfred

 My story Is so similar to yours. And I have 3 small kids so I can understand your worry. I had to go down the private route myself to get it actually taken seriously :( I'm 38 years old. Do you mind me asking how old you were at diagnosis and were you a smoker/ex smoker. Cant believe they took so long to diagnose you. I hope you are being treated and are doing well now. You're in my thoughts xxd

I am sorry to hear this.NHS takes long time to diognose, I wish I could have gone private for my son.By the time they do the test, its already gone to the other parts of the body and then delay in the treatment.If you can afford,  I highly recommend to go private.All the best xx

You're right :( I'm shocked how rare it is. And how I've never heard shoulder pain can even slightly be linked to it. I wish we could all be educated more about these things. We only know about the  typical and obvious lumps and bumps and things :(  hope ur son gets better.. Prayers for him xx

Hi Shum,

I was 40 at diagnosis… and I’ve never smoked, so it was all a bit of a shock (particularly as I was on maternity leave at the time)! I’m on chemoradiation at the moment (round 3 of chemo starts tomorrow; and 7 more rounds of conventional radio before SABR to my scapula). How are you doing with treatment plans etc?

All the best,

Gini x

Gosh Same here.. 38 and never smoked either. So strange how this tumor works and defies the statistics at times with cases like us and probbaly lots more. Its sad that 'smokers' always get put into this tick box of risk factors which at times is biased towards them and kind of unfair (even tho yes i understand all the dangers of smoking' but sometimes I think they feel judged) . And then comes people like us who defy the norm and leave the drs scratching their heads. If I didn't go private I probably would've never known for God knows how long maybe until it became terminal. I wish they would change the bias of lung cancer and smokers.. This way every person wont brush off their symptoms just because they're not a smoker. Anyhow rant over lol sorry... I literally jst found out so all the plans are yet to be arranged tonorrow. Thanks so much for taking the time out to reply to my question. In a weird way its always good to know there's someone out there in the same boat as you and as shocked as you probably were:/ gives me a bit of comfort in a way that I'm not alone.. And we are both relatively young with kids so can probably understand the frustrations of it quite well.

Stay safe and well :) 

Btw just one more quick question... Did you notice any unintended weight loss before diagnosis? I know it may not have been noticed by you to be fair as you were on mat leave so may have had baby weight. But I really struggle with weight loss.. Even when I'm dieting! And realised I lost 5kg in the last months in the run up to being diagnosed without watching what i eat which is impossible for me as I have insulin resistance which makes it hard for me to lose weight like a regular person. Anyhow was just wondering if you did.. In my case I shouldve picked up on it as a red flag 'unintended weight loss'. But i guess one just doesn't really think that hard about things at times. Oh well. No use looking back now I guess... Xxx

Hi Shum,

I completely agree with you about the biases around lung cancer. It’s all so frustrating that because we didn’t smoke, we don’t fit the risk profile. But the reality is that we do. More and more young non-smokers are getting this disease (particularly women) and we’re just slipping through the net because the risk profile isn’t being adjusted. If it wasn’t for my private MRI, goodness knows how much worse it would have been before we diagnosis. And I agree, it’s still a stigmatised disease, because if it’s association with smoking-but no one deserves to be judged or have cancer, regardless of whether they smoked or not!!

Funnily enough, I did have weight loss… but I was on weight watchers, so it wasn’t “unintended” exactly. But looking back on it, I probably did lose more than I should’ve done (given what I was eating). But never in a million years would it have occurred to me that I had cancer… even with the shoulder pain. Just crazy!!

How are you doing mentally? After my diagnosis I lost LOADS of weight just from the anxiety and worry-I was literally sick with it. The waiting for answers was definitely the hardest bit for me. Once I had my plan, I definitely felt much better about everything. So I hope you are doing ok. It’s definitely tough… especially with small children!

What is your actual diagnosis, do you know yet? (Mine is adenocarcinoma nsclc.) Glad things are moving for you now. If you don’t mind me asking, what have you had done (in terms of tests)? Do you know which hospital you will be under? If you haven’t already, one of the most important things you can do is make sure you get your tumour’s molecular profile, as this will determine your treatment. Some molecular mutations have targeted therapies that are really effective (not mine, unfortunately… but mine is rare). There are also lots of Facebook groups for the different types of lung cancer, which can be quite helpful in terms of information.

The second most important thing is not to Google prognoses statistics. They are outdated and don’t take into account recent advancements in treatment (which change significantly every year). 

I really hope you’re doing ok. Drop me a message any time. I’m always happy to chat!

Gini x

Hi Shum,

I just wrote a reply…. but it seems to have disappeared (so sorry if you see this twice.)

I completely agree with you about the biases with lung cancer. So frustrating that we weren’t considered at risk, because we didn’t smoke. When in reality, more and more non-smokers are being diagnosed with lung cancer-particularly young women. I just wish the changes to the risk profile were filtering through better. And I totally agree that lung cancer is a stigmatised disease. No one should be judged for having cancer, whether they smoked or not. It awful!

Re: weight loss… I did lose a bit of weight, but it wasn’t unintentional, as I was on Weight Watchers. But looking back, I definitely lost more than I should have  done, given what I was eating. But even if I had noticed it, I don’t think I would have thought in a million years that it could be cancer. Even with the shoulder pain! It’s crazy!!

How are you doing with it all? Do you have a full diagnosis yet? (I have nsclc adenocaricoma). I found the diagnosis bit the hardest-just not knowing what it was, and what the plan was yet. So I hope you are doing ok. Also-make sure you ask them to do a molecular profile (genetic profile) of your tumour. This will determine the type of treatment you get, because some mutations are much more susceptible than others to targeted therapies and immunotherapies-many of which are really effective! So please don’t Google prognosis. The stats online are outdated and don’t take into account many of the new treatments that are available today!

Really hope you’re doing okay. If you want to message me any time, please do… Always happy to chat!

Gini x

Hi Gini,

Thank you So So So much for the fountain of information and advice. I'm super grateful. I really feel like you're the only person I know right now who knows what this particular cancer entails with being so rare. I am yet to be given my final diagnosis.. Waiting on the results  but I will definitely look into the molecular profile thing and ask my consultant to give me all the details and a copy of the biopsy report etc. I will definitely be in touch when I know more in a few days :( thanks sooo much again honestly, you're the only source of hope in this dark time for me right now. Lots of love and good luck to you too.. Will be in touch soon xxxx 

Shum