Hi

Had a letter from my Consultant this morning confirming that I need another CT scan with a 15 and 30 minute delay with contrast due to the large size of the lesion.

So more waiting and worrying

Hi Sandpiper oh no another scan, do you have a date yet?  Like you say more waiting and worrying.  Hopefully you won't have to wait as long this time.

Lee x

Just really down at the moment. Trying to be normal and get on with daily life but its like a wave of doom hanging over me.

No date for the scan yet but consultant said he has marked it as urgent so just have to wait.

Hi Sandpiper,

When you were expecting to have results by now and not expecting to need further investigation, you are bound to feel down. This is not surprising and unfortunately, our over-active imaginations tend to take us to all sorts of dark places, which doesn't help. I hope that you get your CT scan soon and that you won't have too long to wait for results after that.  This is always an anxious time and irrespective of the outcome, you'll feel better once you know .

You'll find that your emotions will change like the weather with this, but rest assured that this is all perfectly normal. Please keep in touch and remember that we are always here for you.

Kind regards,

Jolamine xx

Thank you so much Jolamine x

Hi,

I’m so sorry to read that you’ve been let down so badly. 
Sadly this attitude problem is getting worse and is a symptom of under funding, poor NHS leadership and an over stressed working environment.

As a former NHS manager I’m always telling people to remember that their case is being processed by a faceless and impersonal system along with literally thousands of other cases and not to make any assumptions. As a cancer patient I’ve been told to my face by a consultant “sorry to have kept you waiting in the corridor, I wanted to read your results - this is the first time I’ve had chance since they arrived last month”! If we’re lucky, a consultant radiologist or pathologist will have reported on our scan or sample and flagged it as urgent to bring it to the oncologist’s attention - but you cannot assume this is the case! Being told “you need urgent treatment” after waiting 6 weeks for your results is not ideal. 

Use every trick in the book to get the service you need. Getting your GP to chase up your results and explain that the delay is causing high levels of stress might help. 


Good luck
Dave

Hi Sandpiper, I hope that you get a date for your next scan soon, I know how worrying it is when you are having the tests, but not getting any answers.

I was in the same place as you last year, I had a 'large mass' found on my liver during an ultrasound. Also went through a CT scan waited for those results, then they wanted an MRI done, then it went to the MDT meeting.  After all of that, they still couldn't tell for sure if it was malignant or not. Due to the size of it they decided that it needed to be removed anyway, so did not bother with a biopsy, they scheduled me straight for a liver resection which took place last August.  It took nearly 9 weeks after surgery for the pathology results to come back, but it luckily came back as being benign.

I know that it is very hard to keep hopeful and positive when you get on this treadmill of investigations, but hopefully after all of these tests you will find out that your lesion is also a benign one.  

Although it was very worrying at the time, I now count myself as being so lucky that it was found, as I had no symptoms at all.

I hope that you get some answers soon.

Best wishes

Annie

Thank you Annie for your message. Glad that your mass was not malignant.

I was wondering why they are requesting another CT scan when I have been reading that MRI's are more detailed for this size of mass and location but hey, what do I know!

If you dont mind me asking, how was your recovery after the resection operation? 

I think that different scans highlight different characteristics in lesions. Both my CT scan & the MRI used contrast dye, but sometimes they still just don't know. Normally they would then just do a biopsy. With mine, it was close to the main artery into my liver, so if it was left even if it was benign, there was a chance that it may rupture, hence why they went straight for surgery.

I am not going to lie, it was pretty tough recovery.  I was in hospital for 6 days and then I wasnt allowed to lift anything heavy for at least 8 weeks. I had part key-hole and part open surgery, so my main incision was the one that I had the most discomfort from.  But normal painkillers kept the pain under control when I got home, so it wasn't too bad. It was just more a case that I was surprised by how tired I was afterwards, I had to get a lot of sleep.  I am lucky that I am retired, if I was still working, realistically it would have been about 3 months before I would have managed full time work again.

However, in a lot of cases surgery is able to be done via just keyhole, which naturally makes recovery so much quicker and easier.

Fingers crossed it will be ok for you & you wont need to go through that!