So back on the 7th July after a 2 week wait to speak to a gp they arranged to do blood tests to see if I was starting the menopause ( I'm 47 single mum) The very next day I was phoned at work to say it wasn't menopause but my Liver tests were through the roof. I was told they'd book an ultrasound and general exam to see what was going on. Within 5 minutes the gp phoned back and said she'd also give me a 2 week cancer referral as she wanted to get the process in motion as quickly as possible.
On the 29th July the consultant phoned to say to save time he'd book me straight in for a ct scan.
The gp exam showed an enlarged liver so I went ahead with the ultrasound on the 1st August 3 weeks after the initial call, it was pretty scary on my own but I got through it and she seemed to be focusing on the same place in the middle of my abdomen under the ribs.
An hour after I got home another gp phoned to say they needed to see me straight away. She said the ultrasound had shown masses on either my liver or spleen or both and to prepare to be told I had cancer. She even asked if I had a will.
She said the referral to oncology was on the system for a ct scan and just to wait and hear from them.
Eventually I had the ct scan on the 8th August after phoning and chasing it up, it was over quickly and the radiologist said he'd get the results sent to the consultant that day and it should only be a couple of days until I heard from him.
I waited 4 days and decided to phone them on Friday only to be told the scan results hadn't been sent and it could take up to 2 weeks to get them sent through not the "couple of days" I was told.
I explained how much turmoil I was in as it had been over 5 weeks since my initial referral and asked why it was taking so long. She checked the records and apparently the consultant had asked for further info from my gp and this wasn't sent until the 26th July!
I am beyond scared and recognise I am now in a deep depression, my symptoms have got worse and I can barely eat as it causes pain and although I know it's hot I am literally sweating 24/7.
Luckily I work in a school so am off at the moment but this is giving me far too much free time to worry about the diagnosis, my Nan aged 69 and my Dad 64 both died of Liver cancer and I am terrified I'm going to be next, my youngest son is only 9 years old.
Sorry for the long post, just wanted to know really if this was usual to take so long to get a diagnosis.
Hi Crochet rose and welcome to the Online Community although I am sorry to see you joining us and to hear about your ongoing diagnoses and the challenges you are facing.
Unfortunately the experience you are having getting a clear diagnosis is not that unusual at the moment. The diagnosis pathway from first seeing a GP to starting treatment is set at a maximum of 62 days…… so let’s look for the system to get things together so that you can understand clearly what you are dealing with.
You may find it helpful to call the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support or just a listening ear.
Once you gave a clear diagnosis there is nothing better than talking with others who are on the exact same cancer and treatment journey.
The Community is divided into support groups (discussion rooms) so once you have your diagnosis have a look through this list where you will find all our many dedicated cancer support groups listed. These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
When you are ready to connect in with a group click on the Green (Bold) link I have created above and once you find a group you want to join click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.
Give me a shout if you need further help or want to chat more.
Wishing you all the very best ((hugs))
Hi Spoons and a warm welcome to you as well.
The waiting is indeed very stressful. The general aim is to meet the 62 days GP referral to starting treatment target but unfortunately this is often missed.
There is one size fits all for how well the system is working as it will be different across Health Boards and indeed cancer departments.
Up in Scotland where I live this target has often be missed for many people for a good number of years 
It is interesting that the Radiologist has mentioned Lymphoma, He/she will have a good understanding as to what to look for…… I was diagnosed way back from in 1999 with a rare incurable type of Lymphoma.
I am still here and living as good a life as any 66 year old can be living…… even although it took 17 years of treatments to eventually get me into long term remission.
There are over 60 types and subtypes of Lymphoma so diagnosis can take some time and often lasts longer than the recommended 62 days. If it is Lymphoma you would have to be referred to a Haematologist as they are the blood cancer experts…….. My consultant was 99% sure as to the type of Lymphoma I had but it took 6 separate biopsies, a few CT scans and a full year to find the clear pathology.
We do have a few Lymphoma groups (you will find them in this list) but you are best not to go down the wrong rabbit holes as treatments across cancers is very different - even across Lymphomas.
I suggest you stick to this thread until you have a clear diagnosis and we can direct you to the best group.
Always around to chat and help.
Good morning Donna Spoons
they are querying lymphoma? I have no symptoms from either, no pain or weightloss, have u by anychance heard of anyone like me?
This is not that unusual when it comes to Lymphoma especially Low Grade Non Hodgkin's Lymphomas.
Over my 5 years helping out on the community I have talked with many people who have only found out they have Lymphoma by accident, normally through being tested for something else. When I was diagnosed I had no symptoms apart from a small rash on my back.
This is all going to take time to get a clear understanding as to what this is so keep working with your medical professionals.
As always the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 providing cancer information, practical information, emotional support or just a listening ear.
Always around to chat.
Good morning to you Crochet rose.
It sounds as though things are making progress.
One thing she also mentioned was sarcoidosis which after some googling ( I know I shouldn't) turns out it is an auto immune disease which can present with very similar symptoms to lymphoma but they are granular masses. This has given me a little hope as I already have an auto immune disease which affects my thyroid but at the moment I'm still of the mindset it is cancer but she said lymphomas are more treatable now.
It amazing how many people initially are told Lymphoma to eventually be found to be an autoimmune condition. But the hospital Multidisciplinary Team (MDT) meeting will review your case and put forward a plan to find out more.
As I said to Donna the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 providing cancer information, practical information, emotional support or just a listening ear.
Always around to chat.
