Hi I am 59 female and was a healthy, active person.I had gone to my gp back in late July, feeling fatigued, a bit sweaty and a bit of nausea, headaches. I thought it could be thyroid problems. Routine blood tests returned high white cell count. 11,200. Further test a week later and further slight increase. 20th August had a flow cytometry test and my results arrived yesterday. Results over the phone, showing Bell clone detected, 39% of lymphoid population consistent with log grade B cell NHL. Immunophenotype most consistent with MZL/LPL.
My white cells have increased and from 20th August are over 12,200. Back in July, no swollen lymph glands felt by the doc, but now my abdomen looks and feels swollen and I have some pains there. My neck on one side also feels stiff. I’m waiting 2 weeks for NHS. I do have private medical cover.
My gp has not recommended a specialist in oncology/Hematology and I’m waiting for the insurers to also suggest consultants. Is there a list of consultants that specialise and experts in their field? I’m worried about my stomach and I don’t have definitive results.
I am a carer for my husband and have to inject him with insulin twice a day.
i live around Henley on Thames, so I guess Reading is the closest area ie Royal Berks, or London is not that far. I’m a bit in shock, however I did have a sibling die of a lymphosarcoma in 1960 he was only 10 years old. I also was told by my brother that my father had a slow growing blood disorder- he was very old when he was diagnosed- but he died at 96 yrs of a not related illness.
what should I be asking, how long do I wait for a definitive diagnosis? Does my stomach swelling indicate a tumour? Does this mean it is spreading faster? I appreciate all the support you can give me.
Hi and welcome to the Online Community, although I am sorry to see you finding us.
The only way to get a definitive diagnosis is through a referral to a Haematologists, so you need to push for this. The Heamatology department will most likely require you to have a CT or PET scan and a biopsy on any areas that show up on the scan. With the scan and pathology results a clear diagnosis and plan can be put in place.
Non-Hodgkin lymphomas (NHLs) can be put into two groups depending on how fast they develop:
Q - What should I be asking?
A - Have look at this LINK to the Lymphoma Action Site
Q - How long do I wait for a definitive diagnosis?
A - This is can be very hard to put a number on as this can take time to get all the information together but you could be looking at 4 to 6 weeks once you have your first referral meeting……. my diagnosis took 21 months.....but I had a rare type of Lymphoma.
Q - Does stomach swelling indicate a tumour?
A - Sorry, but that would be a total guess.
Q - Does this mean it is spreading faster?
A - Again a guess.
As where to find consultants, all the main cancer centres of excellence will have top consultants. I don't know of a list but if you post a questions to our Nurse Team in our ‘Ask an Expert’ section they may have access to information. these folks are mostly Volunteer Experts so please allow 2 working days to get a reply....... and some of the folks local to your area can help you out - I am a touch far away to help in that area.
A blood cancer journey can be long and hard but the results, on the whole can be very successful and long lasting. Blood cancer is very treatable.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
Keep posting as we will try snd help as best as we can.
Well done and let’s look for you to get answers one way or another.
John has given you some good information and yes, look at the questions I put down earlier as this is a private appointment you should expect to be given time to be heard........ but you do need to be prepared with everything down on paper with timeframes with a copy to hand over....... you don’t want to walk out the door and have that ‘I wish I had asked?’
You have to be ready for this to not to turn out how you expect. I have talked with others over the years who have went down the private route and the end result was not Lymphoma, this is great, but the journey continues until you get all the facts.
We are around all the time so if you think of anything you think you should ask but are not sure come back to us.
