Hi. I’m new to here so please bear with me!
I’ve been investigated for a large lump in my groin (and smaller one in armpit) over recent weeks under the care of a general surgeon. I’ve got a long history of rheumatoid arthritis (I’m 51 and was diagnosed when I was about 36) so they thought it might be a weird arthritis thing, especially as the needle biopsy did not show lymphoma. It was however described as unusual and was sent on to national specialists. They said it looked suspicious but asked for more tissue so I had the lump excised two weeks ago
Long story short I went back to get my wound looked at last week (lymph fluid wasn’t draining) and was told that further local tests on the gland now confirm I have NHL. Still waiting to know specific type from the national specialists and for a PET scan but I thought I’d ask at an early stage what people think are the really important things I need to know or to ask about? I’ve started a list and see haematologist a couple of weeks (no date yet) but my head is in a whirl so trying to organise my thinking a bit...
Thanks in advance
Caja
Hi and welcome to our corner of the Online Community, although I am sorry to see you finding us.
I am Mike Thehighlander and help out around our Lymphoma groups.
First be encouraged, blood cancers like NHL are very treatable with good results, yes some folks have a bumpy journey but it is all do-able. I was diagnosed over 20 years ago and i am still around doing very well.
What you need to ask?......... well done in starting a lists - this is very important as you will get a lot of info, so keeping notes is important and I would always recommend two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward - information is a good way to turn the nice in your head down.
Questions?
What type of condition has been diagnosed? - exact name and grade etc.
What are the proposed treatments Chemo, Radiotherapy......?
What is the name of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.
This is also a very good place to get some bed time reading - Lymphoma Action
We do have these specific groups so if your NHL type fits these then join them, but as there are so many types of NHL you may well stick with this group - time will tell.
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 like Thehighlander
Keep us updated as we will be able to walk with you through this.
Hi again , I think that we would all say that this intel period when 'the plan' is being put together is frustrating but in the big picture, getting this spot on is so important. There are many treatment types that can be used and its all about using the very best one for your presentation..... hence the time it takes.
Sleep at this time can be hard to find as the questions and thoughts are buzzing round your head...... but a note book helps you sleep!! As these questions often come at silly-o’clock so get the note book out, write the thoughts down and park them - it does help.
Remember - all the worry in the world will make no difference to what your consultants say. But worry and stress will wear you down at a time you need all the strength and mental capacity to get though this.
Come back at any time as we are always around.
