Hi there, 

Im not too sure what happens at the first appointment in your situation but my dad was diagnosed and his first appointment at haematology involved being weighed, having his obs taken and his bloods taken. Then he went and spoke with a consultant about what was going on, what they were and weren't going to do and things like that. Dad has appointments every two weeks now and it's the same routine. Dad wasn't well enough to go today so we had a telephone appointment with the consultant instead of taking him in. I'm not sure if it's the same for everyone but that's what happens with us. 

I'm so sorry I couldn't help more but hopefully someone else will be along soon with some more info for you and we are always here to chat. Take care. Xxxx

Thankyou very much for your reply, it will most probably be roughly the same for the first appointment. I hope your dad is doing well, can only imagine how hard it can Be for you all. Wishing him the best xx

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.

Thankyou for taking time out to reply. Yes I totally agree though, not knowing is the worst. It’s really quite draining. Would you mind me asking where they took biopsy from? They was originally going to take from neck but as I now have many more come up they are taking from another with less possible complications. Also what symptoms did you have? I do hope you are keeping yourself well And treatment is going well x

Hi, they took my first biopsy from my neck, it was the ENT doctor that referred me for this. It was him three weeks later told me over the phone I had lymphoma and told to cancel my holiday as I was going the next day. Just my luck.  My first symptom was a terrible itch at the bottom of my scalp, I had hubby checking it and cudnt see anything. Went and got doc to check it as it was driving me nuts, she said it was a bit dry and gave me a shampoo to try, it didn’t work. I was also losing weight, my clothes just didn’t fit me anymore. 2 stones I lost but I have an auto immune problem and doctor thought it was down to that. I went back when the lump came up in my neck, I wasn’t going to as she prob thought I was nuts by this time. However, she examined me and referred me to ENT on an urgent referral. This took a month to get. Lump was getting bigger by time I saw him.he arranged for an ultrasound with biopsy to be done. I was then referred to see a haematologist. She arranged for a ct scan to be done and a bone marrow biopsy. This took weeks to arrange and results to be back to her. She then wanted another biopsy under my arm to be taken as she wanted to be sure if it was indolent or aggressive this time. The ct scan showed I was stage 3 B as I had the night sweats, losing weight, terrible fatigue. All this info tells them the best treatment which is decided with the multidisciplinary team. When you actually get all this information you are more than ready for treatment to start, this waiting is just awful. Writing it all back down seems strange but it’s amazing how quickly the treatment goes, every month ticks another one down. Unfortunately for me on my 2nd follow up appointment she found another lump in my neck (finished treatment in Nov) I had to go for bloods X-ray and another biopsy with ultrasound. Back on the merry go round. Phoned her last week as it was three weeks since biopsy, she told me it came back suspicious but doesn’t think it’s in the lymph node but the submandibular gland!, she has ordered another test on same biopsy to be done and is chasing it up atm. I did get an appointment letter in for 27th March. More waiting. She did say that as long as I’m well even if lymphoma has came back they won’t do treatment at this stage, I will go on watch and wait. It’s getting near the dreaded holiday time again 1st May, I’m dreading if they need to do anything on my gland, if they do they better hurry, the months are flying in except when you are waiting for results. Sorry if this has turned into a bit of a rant. I hope you are ok, please feel free to ask me anything as I know it helps to read real peoples stories.take care x

Yes it does help hearing other stories from real people as google is not the best thing to do. I kept putting symptoms and weight loss down to other things until the lump, then within a few months I now have 7 that won’t go down in different areas, with the night sweats, though I’m either overly hot or overly cold during the day too. Awful chest and abdominal pain. I’ve had a cough since Christmas that just will not shift, though my chest has been clear every time I’ve been up the docs.fatique is awful and I seem to itch all over but mainly my hands that are the worst. 

I know there could be many things to explain the above I’m sure, i think I’m trying to convince myself to save me over worrying now. I’ll just have to wait until my appointments.

Thankyou for replying and for answering my questions, I do hope your biopsy results come back okay and you get to go on holiday, as it is definitely well needed and deserved I’m sure. 

Feel free to message if you ever just want to chat and keep me updated on your progress xx

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.