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

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