Hi Sandpiper.  It really is stressful waiting for scan results especially like you said it could be a fast growing cancer.  I would phone the secretary again today and everday until you get heard.  It really is not good enough to be told they are on a go slow ( this is your life they are talking about)  Why don't you contact PALS at your hospital and put in a complaint.  I have secondary cancer and found that you have to stand your ground and make yourself heard.  I am really praying that your scan comes back okay.  Big hugs.

Lee x

Thanks for your reply.

The secretary is notoriously hard to speak with as her phone automatically goes to a voicemail! Tried asking reception for an alternative number but told that is the only one.

I will keep hassling though!

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!

Thanks for sharing with me. 

I havent been given any info as to location near blood vessels etc. All I know is that its located between VII and VIII which isnt much help to me!

I am trying to be a bit more laid back about it. I have no symptoms relating to the lesion. I would also be none the wiser had I not had the ultrasound so I need to be thankful that I feel as I do and the lesion is being investigated. It also helps enormously that I can air my concerns on here and chat to people who have or are experiencing similar journeys.

If I do end up having an op whether it be due to malignancy or just for its size as I am self employed, the long recovery is very worrying but one step at a time and I am not going to worry about that just yet.

Thanks once again for sharing x

Have they told you how big it is? As that can have a bearing on treatment plan as well as the position if it. Mine was approx 10cm long x 6cm wide x 6cm high, hanging off the front of my liver like a weird appendage.

It is good that you have had no symptoms, have they done full blood tests as well? The only thing that showed up on my bloods was a raised ALP level at 143, that was what prompted the ultrasound. 

Try to not worry about surgery & being off work, they will only go down that route if there is no other option. Sometimes it will just be a monitoring process with regular scans and bloods.

The thing that I tried to stay positive about was, that primary liver cancer is no where near as common as a lot of cancers, in a lot of cases it affects people that already have severe liver disease. I tried to eat healthily & no alcohol, give your liver all the help that it can get. 

Feel free to as any questions.

All the best.

Have they told you how big it is? As that can have a bearing on treatment plan as well as the position if it. Mine was approx 10cm long x 6cm wide x 6cm high, hanging off the front of my liver like a weird appendage.

It is good that you have had no symptoms, have they done full blood tests as well? The only thing that showed up on my bloods was a raised ALP level at 143, that was what prompted the ultrasound. 

Try to not worry about surgery & being off work, they will only go down that route if there is no other option. Sometimes it will just be a monitoring process with regular scans and bloods.

The thing that I tried to stay positive about was, that primary liver cancer is no where near as common as a lot of cancers, in a lot of cases it affects people that already have severe liver disease. I tried to eat healthily & no alcohol, give your liver all the help that it can get. 

Feel free to as any questions.

All the best.