Hi, can I ask you if you have had a ct scan?

i guess you must have if they have diagnosed grade 3 lymphoma. Have they told you what kind of lymphoma you have? It’s strange that your biopsy result came back so quickly. Mine took almost 3 weeks. All in all my results took months before being told what treatment they were going to do and that was after the multi disciplinary meeting. One doctor can’t make that decision. I have grade 3 Nodal marginal zone NHL. Low grade. They started me on chemo as it was in four places in my body. If you are on wAtch and wait the nodes must be small enough to warrant treatment yet but you will probably have to go for checks to make sure there is no change. I also had to cancel my holiday once the lymphoma was diagnosed so I kinda understand what you are going through. I have now finished 6 treatments of chemo and have coped well with the treatment and are now in remission. I’d speak to your consultant again just to confirm everything and take a list of questions with you. I wish you well.

Hi there,

Like Scones I'm a bit confused at how you've been treated.  It would be decidedly odd for two consultants (even just two doctors) at the same institution to tell you such different things.  Is there even just the slightest chance that the one who said it was stage 3 had someone else's notes?  Administrative mistakes can happen. That said I do note that both said it was low-grade (which is good), you don't mention what stage the second one said it was?

Did you have another person with you to provide a second set of ears?  Unfortunately the minute cancer is mentioned we really struggle to hear what we are being told, no matter how clearly it is put to us.  I always take a second person to meetings with my consultants, usually my husband but if he is out of the country I have even just taken a friend along to be a second set of ears.  So I wonder if the two stories you were told weren't quite as different as they might have seemed but with the stress of the diagnosis your brain decided not to be very helpful.

I mentioned going on holiday to two different consultants and was given very different advice too.  However, looking back I think part of that was me, in my "you have cancer shock" not giving them the key information (i.e. I mentioned the location meaning a long haul flight to one of them, but not to the other etc.)  It's difficult as the information you've given to each will never be word for word the same and with them being individuals they would read different things into it even if it was.

Next time you see them make a point of letting them know that you are confused.  Ask direct questions to get the answers you need/want (write them on paper and take them with you) and, if it helps, repeat back to them your understanding of what they are telling you, that way they can correct you if the shock is causing your brain to trick you.

Are you being seen soon?

Best wishes,

LJx

Twin two, I hear you and agree that a second person should be with you at these doctors meetings, I met my surgeon and had a few questions for him, it turns out I still was not diagnosed at the time of our meeting, so my questions would be useless, the surgeon told me he is setting up a PET scan, he started telling my wife and I if it is cancer it’ll be stage 4, a couple days later my wife mentioned my lumpnodes and asked me about something else, I asked her, where she gets this information from, she said from the doctor don’t you remember, ha, I honestly don’t remember my doctor mentioning these things, I was so disappointed with not being diagnosed my brain mussta shut down after he told me this, I get this PET scan on Wednesday December 5th and I see the surgeon again on the 7th, hopefully this time he will be able to give me an answer, it’s been 6 weeks for me already, bloodwork, ct scans, MRI and still no diagnose, anyhow, I will be taking my wife with my surgeon meeting on the 7th, I must be loosing it, I can’t seem to remember talking about things, good advise your giveing us all ,,  Jack

Thanks Jack,

The bad news is it gets even worse once you get chemo brain :-D

Oh the brain is a weird and wonderful thing!!!!!!

LJx

Hi. Thanks for your reply  Mine is follicular lymphoma  Low grade stage 3.its in 4 parts of my body. I'm constantly tired and worn out. I'm back at my gp today to discuss things  My fiance has been to every appointment with me. The 1st consultant was an ENT specialist and the second consultant is a cancer specialist so maybe I should just go with his decision tht I don't need treatment just watch and wait  

Hi

Just read your post, perhaps my story can help.

 I was diagnosed with follicular lymphoma, low grade and was stage 3. Sounds like the same as you. 

When first diagnosed in Nov 2013 I went on watch and wait, I was horrified! I did this for 9 months. During that time  more lumps appeared, it was really scary.

Finally my spleen became grossly enlarged. My hematologist who was in charge of my care then started R chop treatment, 6 rounds with a followup of rituximab for 2 years, this was due to the cancer becoming very active.

The rational to  first be put onto watch and wait was to save treatments for when they were needed.  Since completing treatment I am back on watch and wait. If my cancer becomes active again they will treat accordingly. 

I used to see the specialist every 6 months and could call a nurse if necessary to ask questions, it's all pretty confusing at first! Now I see them once a year, but, if I notice any change, new lumps, sudden weight loss and so on I would contact earlier.

I hope this helps

Take care

Sara.