Hi waiting for a PET/CT scan as was d... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Hi waiting for a PET/CT scan as was diagnosed with nsclc adenocarcinoma last wednesday.The waiting is a nightmare.....

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jujuju
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Georgie1 profile image
Georgie1

Hi jujuju, it's always the worst time for everyone when it's just waiting for scans treatments or results. Just stay strong and positive, as this will really help you!

I saw my oncologist yesterday, my blood works are good, and I have my second cat scan on 18th march to see how much more my tumours have shrunk, the first one was in November and on 17th December I was told that the largest had shrunk by 3cm. The others had also shrunk. Fingers crossed you will get your scan very soon and they will start on your treatment. Good Luck!

Hi, waiting is the worst, I am waiting for the results of my latest CT scan too, usually take around 10 -14 days for me to get results. This will be my 7th one since diagnosis it's always the same though. You just have to accept that;s how it is and try not to worry, there is nothing you can do about it. Trying to keep stress free is hard but important. I assume this is for staging? when you know get back in touch with us I'm sure we will be able to help you more.

Take care

Lyn x

jujuju profile image
jujuju in reply to

Thanks to you both for your replies.I first had x ray on 3 january and GP phoned on 4th to say there was something on it...chest x ray.Consultants secretary phoned same day and gave me a cancellation on 7 january where they said it looked like cancer but I needed a ct scan and probably bronchoscopy.I got the ct scan 10 days later then tuesday 22 I had lung function tests which said my lungs were excellent.Wed 23 Ihad the bronchoscopy least said about it the better!But they did get what they needed and then I saw consultant wed 30 who told me what I have and said I need this pet/ct scan to see it it is anywhere else and stage it and if it isnt I am an ideal candidate for surgery.Pet scan and surgery are at another hospital a s the one I have been with doesnt have the facilities.They said I should hear by middle of this week re appt for scan and if I dont I need to leave a message for the respiratory nurse who is my key worker although shes on holiday this week she will pick up messages.

I work from 11am to 10pm today in a bar restaurant chain and will have to have my mobile on me.Also tomorrow 11am til 5pm then I travel 30 miles to one of my daughters to look after my two little grandaughters til friday night while she teaches.I am 58 married for the second time and my husband of the last 12 years is fantastic.I have 2 daughter and 2 step sons and 5 grandaughters.Never been ill,never been in hospital.Stopped smoking 7 years ago next week and had a cough for a few months which I mentioned when I went to my GP on new years eve about something else completely.I go from wondering if I should open a new eyeshadow to thinking what I am going to do for a holiday afterwards!The waiting is just awful and I know they have the nice pathways and the 31 day thing but I dont know if thats from last wednesday or after the results of pet scan.The consultant said they will see my two days after pet scan for results but its waiting for this scan and constantly waiting for the phone to ring!Thanks for reading and replying.Julie x

Cherryblossom profile image
Cherryblossom

Hi Julie, just wanted to let you know that you're not alone in this. 8 months ago, my mum was at the exact stage you are now - waiting to get results! It was the most awful time of our entire lives. Nothing can make this easier, but I just wanted to say that although we felt the world had ended at the start of this, 8 months on life is a much happier place. My mum like you gave up smoking 8 years ago and it was a very long ongoing cough that led to the cancer diagnosis. Mum went on to have chemo and radiotherapy and is doing really well. Tumour has halved in size ( mum had a very large one - 10cm) and we're now having regular scans to check the radiotherapy is killing it. Mum's living life pretty normally and we're just about to head to the gym for a swim together! My advice is stay as positive as you can. Mum does visualisations everyday and visualises her tumour shrinking and dying - we feel this has helped her mindset & strength hugely. Also when you get the full diagnosis, things will feel more in control in the sense that you will have a treatment plan put together. Sending you prayers and good wishes! Sarah x

jujuju profile image
jujuju in reply to Cherryblossom

Thanks Sarah!It is helpful to hear from othes and glad to hear your mum is doing well.I hadnt considered they might surgicaly remove it and the thought does not fill me with joy but if it is a possibility for me then its the best thing to get rid of it.Must get ready for work now.Will hang on in waiting for the call!!!!Julie x

ericbyrne profile image
ericbyrne

Hi Julie,

I can sympathise with you on your anxieties waiting for test results,its par for the course I am afraid,best wishes for good news.I was dxd in 2008 with NSCLC however,its type is described as Squamous,my treatments included neo adjuvant chemo,which if successful would shrink the tumour in my upper right lung to a manageable size to make surgery possible.Well I was tested after only two cycles of chemo and my oncologist told me he had never seen such shrinkage in a tumour before,I was certainly a candidate for surgery.I am a natural worrier,prior to my chemo,I worried about being nauseous,hair falling out (would'nt mind losing the gray ones LOL)prior to surgery I worried about it being excruciatingly painful and leaving me a breathless invalid,well I am happy to tell nothing came even close to realising my apprehensions,I sailed through the lot with the minimum of discomfort,OK I did have one wee bout of constipation during my chemo regime,I could have even avoided that if I had paid more attention to drinking plenty of fluids at that time.

Following all your test results,your oncologist with be involved in a multi-disciplinary team to discuss your results to evaluate the best possible options for a successful outcome for your particular situation,try not to worry,I am sure things will come out well for you.A saying I heard some time ago helped me through that difficult period was "Worry is like sitting in a rocking chair,it gives you something to do,but it dos'nt get you anywhere".One day at a time,simple,but none the less, true.

Hi jujuju, try and stay calm and positive. I was diagnosed with nsclc squamous in Aug 2010 just after my 60th birthday within 5 weeks I had a CT scan,PET scan, bronchoscopy, mediastinoscopy and finally a lung biopsy. If honest it was not an easy time, however all these procedures were given in order to collect a tumour sample to determine the best course of treatment for me.luckily I was suitable for surgery and the lower lobe of my lung removed and then 4 treatments of chemotherapy,Cisplatin, changed to Carboplatine due t Tinnitus, and Vinorelbine. I did have a collapsed lung but thanks to the Swiss air I can now fly again. I wish I had found this website at the beginning of my diagnosis as all the people on it have good responsible and very helpful advice. I hope you can try and keep your stress level down whilst awaiting all results and my thoughts are with you

jujuju profile image
jujuju in reply to

Thank you Rabbie and eric for your words and kind thoughts.I heard today about a lad that drank where I work who killed himself by pouring petrol over himself and setting fire to it in the drive of his girlfriends parents house.I was abit annoyed.I love my life and will hang onto it with whatever I can x

jujuju profile image
jujuju

Have appointment for pet scan on monday!Julie

jujuju profile image
jujuju

Had the scan on monday and will see the consultant next monday to find out if I am suitable for surgery.Been reading up on VATS which my local hospital appear to be very good at.I am terrified at the thought of surgery but things do seem to get easier with time .I suppose I just get used to the idea of having cancer!

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