Lung cancer with no side effects

Hello everyone

We are in that terrible period that many of you will recognise between being given potentially devastating news by a Dr and having it confirmed. The whole thing came as a total shock and we'd love to hear any information that we could draw upon in the meantime.

Briefly, my wife who is only 53 and very active is slightly asthmatic (managed) but developed a shortness of breath (just for a day) so went to get it checked out. The Dr said her lungs sounded clear but did a "D Dimer" blood test in case there was a blood clot. We were contacted in the middle of the night by the 111 service to say that the test was positive so she should go to A&E to get checked out. She had an ECG and a further blood test which was still positive (not as bad though) and she was given blood thinners as a precaution and told to come back the next day for a CT scan. This was done on Saturday 21st and the Dr said that there were no clots but a very unexpected result with a 3 cm soft tissue mass at the top of her right lung along with enlarging of the lymph nodes. He said that the CT report would usually be specific if it was definitely cancer but they'd not committed to it although given the circumstances it was a strong possibility. He was also very nervous about the whole thing which scared us a bit.

She's been referred under the 2 week procedure and we really don't know what to expect next. We are hoping that it could perhaps be something else, less serious but worried that it may be lung cancer or worse, secondary to another area of her body.

We are devastated as it was the last thing we expected - she has literally no other side effects and has never been ill before. I came across the forum tonight whilst (regrettably) googling but wondered if anyone might have had any simiar experiences who might be able to tell us what to expect? 

Thank you

 

Steven

  • Sending hugs and positive vibes your way Davo also ️

  • Hi Steven 

    I hope today went OK for you both. 

    Kind Regards 

    Mel

  • Hi

    Sorry for the delay in replying but we've had a bad time of it since Friday - sadly it was bad news, worse than we'd expected. They had initially said that the biopsies would only take 3-5 days and once the results were back, if they needed action they would get us in earlier than the 14 day appointment that they made. When this didn't happen we hoped it was because they weren't as concerning as we'd initially feared. Sadly, this wasn't the case - the respiratory consultant said that it was definitely lung cancer and more than that, that it was actually in both lungs along with the lymph nodes (they had originally said that it was just the right lung. 

    Unfortunately, due to the shock etc things got a little confused from there but from the information I could get it is apparently non small cell cancer. They don't know how long she's had it yet or how fast it has progressed. He said that she had been discussed at a multi disciplinary panel and whilst the consultant had asked if radical treatment was possible they had apparently said "no". I need to look more into this as I'm not certain on what it means. He said that instead of that, her biopsies had to be re-tested which would take a further 2 weeks and this was to determine what type of treatment she might be eligible for.  They explained that the tests were ongoing and couldn't be rushed as they did separate ones for each type of potential treatment and that we would be passed onto an oncologist after that. He said it was stage 3 to 4 but only palliative treatment would be available. 

    I really hoped it wouldn't come to this - it's been an awful few days having to tell our children and other family members etc. 

    It sounds terrible but we've literally had nothing to be positive about throughout the whole process - ,y wife still has no side effects. feels 100% fine, is only 53 and they seem as if they are saying there is nothing that can be done. 

    I'm hoping we get more information/hope from the next appointment. 

     

    Steven

  • Hi Steven 

    Oh my, I'm so very sorry it isn't good news for you both. I can imagine its been so tough for you both to get your heads around it and sharing the news with family members. We found that the hardest thing to do out of all of it. 

    Do you have any other appointments booked? They gave my mom some numbers for the nurse that she could call to clarify anything so not sure if they had done that for you both? 

    I wish you both well and please keep us updated. Sending you all the positive vibes to you and your family

    Mel 

     

  • Thanks Mel - we've had a couple of calls with McMillan nurses since which have reassured us that my swife's case is of interest to the oncology staff there given the circumstanced - non smoker, young age, good health, no side effects etc. Apparently the biopsies that were taken are subejcted to 7 separate tests now - 3 of them are back so far (2 negative and 1 with only trace results) with another 4 to follow - I'm guessing that 1 or more of those will show what the main type of cancer that needs to be treated is and how best to do it?

    In the meantime they've made an appointment for us to see an oncologist next Thursday so hopefully all of the tests will be back by then and we can see what we are dealing with.

    Although things have moved on a little bit now this is still absolutely surreal - Lisa still feels 100% fit and the whole thing feels like it's happening to someone else as opposed to us - it's horrible but if I'm honest, I feel less stressed than I did before we got the actual result - I think it's sometimes the hope that hurts you - we were devastated when we thought we might be ok but found out we wouldn't be - at least that horrible part is done now. We now need to concentrate on what the actual position is and what we can do to make the best of it.

     

    Steven

     

  • Hi Steven 

    I hope you and Lisa are doing OK since your last appointment. 

    From my own experience with my mom, the biopsy is to see what type it is. My moms is adenocarcinoma and is non small cell lung cancer. 

    I know exactly what you mean. I felt like I was having an out of body experience a bit because we couldn't believe it was happening to us. It takes a while but I felt the same when we had a confirmed diagnosis. It was a sense of relief in a funny way and focused on the next steps. 

    I hope your appointment on Thursday goes OK. One step at a time. Wishing you both all the best 

    Mel

  • Hi

    Well, we had the oncologist appointment today. There was a lot to take in but he was really nice and very patient with us. Lisa has Non Small Cell Lung Cancer - adenocarcinoma, just like your Mother but Lisa's is apparently pretty rare - it's the ALK mutation which tends to affect younger women who are non-smokers and haven't had side effects before diagnosis. Sadly, it is stage 4 (spread to lymph nodes) so not curable but the oncologist was very positive about the treatments available. I can see from this forum that there are other similar experiences and some support groups as well which I'll check out for her.

    Lisa is going to be put onto alectinib which is a course of tablets - 8 a day. The Dr said it was generally very effective and would hopefully stop it from spreading and ideally shrink it as well. If the tablets work she'll get monthly blood tests and 3 monthly CT scans to monitor it. He was really positive in the circumstances and of course, we'll try anything that is offered. He suggested that the tablets could last for years by which time there could be new options available to try and if not there was another tablet option and also traditional chemo etc.

    It all starts from tomorrow when the first batch get delivered. It's obviously not "good" news as such but I have to say that we feel much better than we have done over the past 4 weeks.

     

    Steven

     

  • Hi Steven 

    Hope you and Lisa are doing OK after your appointment, it must have been a bit of a tough day for you both. 

    I know exactly what you mean, when you have that appointment after all the tests, it's an anxious time but at least you know what's going on. Sometimes the not knowing is the worse isn't it. It's great to hear that the Dr was positive in the appointment in regards to treatment. I really hope you are both doing well. 

    Chat anytime and keep us updated if you wish. 

    Take care both 

    Mel

     

     

     

  • Hi Steven 

    Hope you and Lisa are doing OK.