Waiting for diagnosis

Hope your wait isn’t too long. I’m waiting for scan results after radiotherapy waiting is the worst no idea how long the wait will be.

Hi Lizziepaul, yes, all standard procedure. First, they have to make a precise diagnosis and they can't do that without a biopsy. It all helps to come up with the best possible treatment plan for whatever it turns out to be. At least they seem to be doing things fairly quickly which is good. Fingers crossed.

Thank you for your message. I really appreciate it. Sending hugs to everyone on here waiting and also in treatment 

Lizzie

Same, Lizzie! Sending a hug - this is a nasty mess we're finding ourselves in at the mo. 

Stay calm - Jo  x

Hang in there Lzzie'. Yes we've all more or less been through the same.. I've had two goes at it, first in my bowel second, last October for my lung. Some on here have had more. It's bloody annoying but sadly here we are giving support as we can. Keep us up to date and good luck.

Raymond 

So they. Tried and failed this morning with sedation and the tubes down my throat

I am so disappointed in myself and upset cause they really needed this test and me. I don't know what will happen now and I'm waiting for a call back from the specialist lung cancer nurse. If anyone has gone through this please let me know .

Lizziepaul, I feel for you.  And I would urge you not to feel disappointed in yourself, because you're not alone!  In 2017 I had a bronchoscopy for diagnosis of the type of cancer for a large mass on my right lung.  They had to put the tube down my throat because they couldn't thread it down my nose.  I had midazolam as a sedative, which is supposed to make you forget afterwards what happened, but it didn't work.  I was awake throughout and remember everything.  They gave me some kind of nasal/throat spray made of capsicum, which seems weird.  The first part of the procedure went well but then they put some fluid down the tube into my lung.  OMG.  I imagine water-boarding is similar.  I coughed and spluttered and felt as if I couldn't breathe at all, it was awful and then they stopped the procedure.  A few days later my nurse phoned and said they hadn't been able to get a definite diagnosis, after all that...! So they organized a CT guided biopsy, which I have to tell you was a breeze - the doctor was super, taking infinite care to find the right place, then warning me I would feel pressure (I did, but it was fine) - and the biopsy showed adenocarcinoma.  So that was 8 years ago.  I hope this makes you feel that you're not the only one!  Courage and strongs to you! 

Hi,

Thank you so much for the information Pamela Ann. You have made me feel so much better. Hope you are ok now ️

Oh, Lizziepaul, I am glad.  These tests and procedures are often scary and we're only human.  But they tell our doctors more about what treatment will work best, so we grit our teeth and co-operate as much as we can, right?   Do keep us posted on what your team offer as an alternative to the biopsy you couldn't tolerate.  Yes, thank you, I was discharged from further treatment or surveillance last July, as they gave me the magic words "No evidence of recurrence" after 5 years.  So all these tests and treatment are well worth it. Crazy, but there has never been a better time to have lung cancer..... Keep strong <3 

Don't be disappointed with yourself - the consultant that performed this procedure on me was amazingly kind and explained to me in great detail what he was going to do. He also said he wouldn't want to be awake during it if he was having it and explained the great care he would take to ensure I wouldn't be. He told me about the two types of anaesthetic he would be using and how he could alter the dosage to keep me just under and unable to feel or hear what was happening. It worked, I was lucky to be in his and his teams care. I was wheeled to a side ward to have a snooze and when I was properly awake (about an hour later) an angel of a nurse came over and had a quick chat to make sure I was OK. Ten minutes later she was back with toast and jam asking if I would like tea or coffee. I am so sorry your experience was bad - not your fault at all. 

 A few days before the procedure I had been given a three sheet information sheet, prepared by the hospital  "Notes for patients undergoing Endobronchial Ultrasound Scan (EBUS)." 

• This detailed  Who would be there and their phone contact numbers.
• Why I needed an EBUS
• Details of how the thin tube called a bronchoscope would pass down my windpipe and a smaller probe  would create pictures of the lymph nodes. 
• a needle would pass down the bronchoscope to collect biopsies from the lung and/or any enlarged lymph nodes.
• I'm SO sorry you have had such a rotten experience and hope the team responsible for your care are able to reassure you. Big hugs and love to you.  Keep in touch, all the best.