Hi

Hi Dave. 

How did you get on today ? I hope it went well or at least , it was what you expected. 

It was confirmed today that my nodule is 16 mm and in the lower lobe , so they are planning to remove the lobe. They will also going to do a broncoscopy and check my lymph nodes, so its the waiting game again . Pretty much as I was expecting. 

I am pencilled in for the 27th but it may change. The unknown certainly keeps me on my toes. Does it get any easier ?

Di

Hi Di,

Hope you had a nice holiday?

So you got some of your questions answered today, i ended up having two brochoscopies and the anticipation is worse than the procedure, mine were done under sedation and both were painless and i had no after effects. Hopefully your surgery date will go ahead as scheduled. Did they say they were going the VATS route?

My appointment threw up a bit of a curve ball, my cancer had originally been staged at 2 with no lymph involvement, however after the Op the Histology results have re staged my cancer at 3b with lymph involvement, so, Hi Ho, Hi Ho its on to Chemo we go!,

Have now been refered to Oncology as an urgent case, so the waiting game starts again and i wont know what the score is treatmentwise until that comes through. 

As i said its a rollercoaster ride !!

Dave x

Hi Didi,

I have not been diagnosed with lung cancer, am still in the early testing stage.  I live in Canada and came across this site and your post while searching for information.

If you don’t mind me sharing what I know so far about my situation, I would appreciate if you could share with me your experience so far.  I understand we are in different countries but I believe the procedures are similar.

Three weeks ago I had a CT scan of my neck/head for an unrelated issue.  The neck scan inadvertently picked up the following:  Two irregular Nodular opacities in the right upper lung.  One measures 12mm, the second measure 16mm, they are adjacent to each other.

The radiologist recommended a chest CT 3-4 weeks later.  My understanding is that sometime nodules in the lung are as a result of a previous infection or scaring so they wait to see if the nodules disappear.  It has been just over two weeks now and I am waiting for my appointment for the CT scan.

If the nodules are still there, based on your experience (I think our nodules were the same size) do you think that the next step for me would be a biopsy?  Also, I have read that nodules this size are more often than not cancer.  I’m like you, “it is what it is” and I’ll get through it.  I’m also like you, I’d rather know the positives/negatives.  Either way, I will deal with it.

Just curious and grateful to have come across your post.

Thank you and wishing you all the very best.

Carrie  

Oh and I believe that opacities also means ground glass opacities, which I believe is the same as yours.

Hi dave.

I am so sorry that you didn't have more positive news yesterday. I don't really understand the staging but it is obviously going to be a slightly tougher battle with a few more hurdles along the way. I ha e only known you for 2 minutes but I reckon you are up for the challenge. 

Hopefully the chemo app will come through sooner rather than later , so you can get cracking. Have you got a good support group around you , family etc ?

To be honest I have had a very busy day. Spoke the the gp, surgeons sec etc. Full steam ahead for next Thursday  but I will be admitted Wednesday afternoon for some final tests. Its all depending on the pcr test I need to have on Monday now. 

Keep me posted

DI

Hi Drock and welcome.

I have only been a member here for just over a week but find it really helpful.

I can tell you what I know and what has happened so far and as you said that you want the pos and neg , I feel that I can relax and be honest.

I was told that I have a ground glass lesion and I also read that the are more likely to be cancerous than solid nodules however I am not one for believing everything I read on the Internet. I have en advised against Dr Google . That said it did remain at the back of my mind.

I'm afraid I can't comment with regards to what will happen next. That is not because you are in a different country, its because you aren't seeing my consultant.  They all have different approaches, although I was 3 months between my 2 CT's. 

As I have said in previous posts, along with many others, it is an emotional roller coaster and the waiting is agony but I can honestly say I felt better when I got the news, despite it being negati. I am prepared for my surgery now and they will doing a bronkoscopy and checking lymph nodes to see if it has spread. So that's my next hurdle.

If you have any further question please ask and let me know how you get on. Have you got a date for your next CT yet ?

Best wishes 

Di

PS. I noticed on your profile that you have hocum. My son was diagnosed when he was 13. I hope it is under control ?

Ey up Di,

As i previously mentioned i have leaned heavily on the Macmillan nurses and drop in centres for help and advice since my diagnosis, i can be honest and express myself more with them, they have been really awesome and fully understand what im going through.

My family unit have been very supportive, but i tend to put on a brave front for them so as to not over burden them with my worries and fears, after all they have also had a massive shock and this thing dumped on them uninvited, so have their own set of emotions and fears to deal with.

Whilst i have no choice but to meet each stage head on and deal with it, i have been deeply affected by my diagnosis, for instance i have developed insomnia and also had panic attacks in public places which i suspect stems from anxiety, so i have requested a referreal to be seen by a clinical physcologist to talk things out.

I think you will already know by now how difficult it is to just sit and wait for the next appointments, and the new infomation which awaits, the not knowing makes it hard to focus and impossible to plan ahead, and puts your mind into overdrive with what if's, and then the self doubts begin again and new anxieties arise.

However, although none of us probably ever expected to be where we are now, we are, and we have to suck it up and confront it head on, fate has put us here and the universe has decided to test how strong we are going forward, so we have no choice but to remain strong and positive in order to win the battle.

Im looking forward to chatting to you on the other side of your Op, and remember there are so many others here who are by your side every step of the way if you need us.

Dave x

Hi Didi,

I don’t have a date for the CT scan yet.

I’m 54, I was diagnosed with obstructive hypertrophic cardiomyopathy in 2016 and in 2017 I had a septal myectomy.  They cut out the part of my heart that was causing the obstruction.

Sorry to hear that your son has the disease, I hope that it is managed and that he doesn’t have any symptoms due to it.

Carrie

Ey up, lol. I haven't heard that expression for a long time !!! . Like I said I have only just met you and had no idea what you have gone through.  So sorry that you have had such a tough time.

I must say that I am handling it all OK at the moment however I am waiting for it to hot may and I am convinced it will at some point.  I went through a very tough time 20 years ago when my son had a cardiac arrest at the age of 13 and after battling with my emotions I was referred to a psychologist.  It was a huge help and only took 2 sessions to address my issues. I wish you luck with that and hope you find it as helpful as I did.

Thank you for your advise. I will ask for help , when and if I need it , promise . 

Let me know how you get on and I will let you know how the op goes. 

Take care of yourself. 

Di x

Hi Carrie. 

My son was diagnosed 19 years ago when he had a cardiac arrest. He has an ICD now and has had many appropriate shocks over the years but leads a reasonably normal and active life. Lots of meditation but that's a small price to pay.

Let me know how you get on. I am realising that there are so many people on here that are happy to give advise and support and that is a support in itself. 

Let me know how you get on with the CT scan and always here for a chat.

Di