Hi, my first appointment involved her arranging for weight and height and bloods to be done. She also organised ct scans and bone marrow biopsy. My ultrasound biopsy had been done and I was diagnosed with lymphoma. She gave me McMillan Cancer Care Booklets and a Bloodwise booklet which I found very good if not a bit upsetting but everything you needed to know was in this book. She didn’t see me again till all the results were in and this took quite a few weeks. After all the results, she told me what stage I was and the course of treatment. This is decided at the MDT meeting. I was actually relieved to get to this stage as the waiting of not knowing is the worst torture you have to go through.

Hi sorry to hear about this and hope you have a great support group. Waiting is the worst. Did you find out on your first hematology appointment? I have my first appointment in two weeks and this has given me a bit of relief but I think that will be short lived by the time my appointment comes around. So I guess I'm asking if it's a long wait for any tests they do at the appointment or things like that?

Hi, I'm afraid my first visit with haematologist was to discuss what tests they do. I had to have a ct scan and a bone marrow biopsy then another biopsy in another lymphnode. All in all it took about 2/3 months to get these done and results to be in before I saw consultant again. It was only after the disciplinary meeting with all consultants they told me what kind of lymphoma I had and what treatment I was getting. They have to do all these tests to tell you what stage and grade of lymphoma you have. You may not need all these tests but I guess they have to be sure before deciding what treatment, if any you may need. Hope this helps 

Hi there,

Did you wait 2/3 months to get any form of diagnosis? I have my first appointment at haemotology next week. The letter they sent me states that it has been marked as 'urgent referral' and that they will therefore be working on a 2 week turnaround for tests and to ensure I am available for the next 2 weeks.

It is a bit of a shock to the system, I only wanted some antibiotics for what I thought was a swelling in my neck. Next minute I'm having an ultrasound and being told there is something wrong and being referred! 

Hi, when I initially went to my GP, he sent an urgent referral to the ENT, it was 4 weeks before I saw him, he then referred me for an ultrasound which was another 3/4 weeks before I got my results. There were so many tests after I got referred to haematology, between doctors going on holiday etc and I also had to change to a closer hospital before my treatment which meant more tests had to be done. All in all from my first visit to my GP it took 3 months before I actually started treatment. Fortunately for me it was an indolent NHL and they decided to do treatment. I was just so disappointed that a month after my treatment it came back but the biopsy is saying it's the same type of lymphoma. Two years after finishing treatment I'm still on watch and wait as they don't always decide to do treatment. It's up to the multi disciplinary team to decide this.

Hi, when I initially went to my GP, he sent an urgent referral to the ENT, it was 4 weeks before I saw him, he then referred me for an ultrasound which was another 3/4 weeks before I got my results. There were so many tests after I got referred to haematology, between doctors going on holiday etc and I also had to change to a closer hospital before my treatment which meant more tests had to be done. All in all from my first visit to my GP it took 3 months before I actually started treatment. Fortunately for me it was an indolent NHL and they decided to do treatment. I was just so disappointed that a month after my treatment it came back but the biopsy is saying it's the same type of lymphoma. Two years after finishing treatment I'm still on watch and wait as they don't always decide to do treatment. It's up to the multi disciplinary team to decide this.

That sounds awful, I'm sorry to hear that!  I hope you're okay.

I was referred to Haematology last Thursday and seeing them next Tuesday. I've already had the ultra sound and the sonographer raised concerns which has led to this stage.

I'm trying to stay optimistic but the waiting leads to over thinking and worrying and it all feels so lonely without people who have been there themselves. 

Thank you for your reply!

That's good news that you are being seen very quickly. Did they do the biopsy? The waiting is honestly the worst bit. Fingers crossed it's good news, keep in touch. Best wishes.x