No definite diagnosis of a 'rare' chronic B cell leukaemia/lymphoma

Recent diagnosis
#1

Hi

I wondered if there is anyone out there in a similar position?

Back in 2016 I was told I had an increased lymphocyte count and this was following something I thought was glandular fever. I had a positive mono spot test, but was negative for glandular fever?Nothing happened, but the next time I had a blood test (because I had a strange fainting thing on holiday) again I was found to be out of range. At this point I was told I would get immunophenotyping, but there was a mess up at my GPs and they told me that I was ok, when in fact the hospital they’d sent my blood to had just lost my test (found this out at a later date). It was only when I got another test (I had quite a lot of throat and other infections) that they said that I ought to be referred again. Long story short, I ended up using my partner’s work health insurance and went privately to see a haematologist. I was told I had non-Hodgkins lymphoma - chronic, not acute. I was also told that it was similar to CLL, but wasn’t as it didn’t have the right markers (so I was already a bit confused! Is it lymphoma or leukaemia?). My current haematologist that I see is friendly, but has done various tests and he said it is rare and chronic. However, because there is no particular support group and it doesn’t look like I will ever get a definitive diagnosis, I feel a bit alone with it. A lot of the time I have different things written about it as a title - marginal cell lymphoma in leukaemic phase was one of the last titles. A lot of people with chronic blood cancer seem older than me or have gone through chemotherapy. I feel like a fraud most of the time for being put in the CEV shielding category. People I know, once they realised it wasn’t an acute leukaemia/lymphoma aren’t really that interested and seem baffled by the fact that I’m not on chemotherapy. It’s quite an isolating experience. I wondered if there is anyone else out there who is similarly confused? Thank you

2 Likes
#2

Oh, @lousyT, I am so glad that you have found us, it sounds as if you have had a really tough, anxious, confusing time over the last 4 years. The Blood Cancer UK website under Understanding Blood Cancer might be of some assistance to you.
What your post shows is the common problem patients have about getting a clear diagnosis as sometimes the symptoms are common with so many conditions. Blood Cancer UK has really been campaigning about this issue.
There are also about 137 different blood cancers.
I have CLL, diagnosed at 53 yrs old, and reading your post the feelings came flooding back of emotions and confusion. I had been diagnosed with Leukaemia and just could not understand why I was not immediately receiving treatment, made better and we would be able to go back to ‘normal’. How could I explain to family, friends and work what I could not understand myself?
I was put on 3 monthly blood tests which I now realise is commonly called ‘watch and wait’ or ‘active monitoring’. I am still very grateful to be on watch and wait.
This was 16 yrs ago, without the information and support there is available now and I had a tough time with work, I was also very faint and therefore found it difficult to stand in transport during the rush hour going to meeting across London, but I could travel when I could get seats. Also a disadvantage of having an invisible condition !! My employers saw it that I ‘wouldn’t’ attend any external meetings and my role became reactive and desk bound.
You are now not alone, we are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Please take care and I look forward to hearing more from you.

1 Like
#3

Hi Erica

Thanks so much for your lovely reply. I think it sums up a lot about how I feel and I’m so pleased that you’ve been diagnosed for 16 years without having to have treatment yet. Luckily I don’t work at the moment, but it sounds like you have been through the mill with yours and it’s sad that employers don’t take the time to understand more about their employees’ conditions. I agree that people expect to ‘see’ something to denote the fact that you need to take certain precautions etc, especially with Covid, and because you look fine they think that you’re making a fuss! I really appreciate that there are volunteers like you that I can speak to. I still don’t understand about when I’d need treatment - what they are really looking out for exactly - I think I probably need to learn more.

I hope you have a happy Christmas and best wishes x

1 Like
#4

Hi @lousyT,

Thank you so much for taking the time to share your personal experience, and I’m so sorry to hear about the reactions you’ve had from other people when you’ve explained to them the nature of your condition- this can’t be easy at all. And like you say, I can only imagine the additional challenges when you also have a rare condition.
Has it been helpful talking things through with your haematologist if you have questions about your condition?

1 Like
#5

Hi Su, thank you for your reply. Unfortunately, although my haematologist is friendly and welcoming, he is also quite intellectual and I haven’t really grasped exactly what is going on. I think this is probably because it is rare that he can’t shed any more light on it for me.

1 Like
#6

That’s a difficult one isn’t it @lousyT, I have now learnt to ask for clarification if I haven’t grasped something and going on till I do understand.
I think often our medical teams are so used to working in a world of medical speak they do not realise others cannot understand that language.
Does anybody else find this?

1 Like
#7

@lousyT

Hi LousyT, it’s so good to hear your haematologists has been welcoming, but as you say, it can be so tricky when your condition is rare and when there’s a lot of unfamiliar information to process. @Erica is spot on about never feeling afraid to ask for clarification, there’s never such a thing as stupid question! Do you find there are opportunities where you can ask further questions or query anything your unsure about?

1 Like
#8

Hi @lousyT. How are things with you at the moment? There has been so much going on for you!

1 Like
#9

Hi LousyT! Oh yes, your journey sounds so familiar to me. Like you, I feel rather marginalised by not having a specific diagnosis. My raised WCC was found whilst I was being treated for another condition nearly 5 years ago now. My phenotype shows an atypical CLL which markers more akin to lymphoma of some sort although my official diagnosis is CD5+ LPD. I have a high WCC with developing anaemia and am so prone to infections, but no lumps and bumps or crippling B symptoms, so here I am… still guessing, watching and waiting. It’s hard to fight when you don’t know what you are up against. Not much help, but you are not alone!

1 Like
#10

Hi @Carolly and welcome to the forum. It’s always so useful to listen to others stories. That’s why this forum is so important, because you never feel alone. It must be so hard not knowing. I hate feeling so out of control on watch and wait but not knowing must be even harder! How are you looking after yourself?

1 Like
#11

Hi Nichola75, Thank you for welcoming me to the forum! I retired early from a stressful job when I found out, and have been mostly hiding away from society since Covid started. I have supportive family and friends which has made things much easier but I think my biggest regret is the feeling of all this wasted time; there are so many things which I had planned to do which have been shelved for now. I can’t wait for the vaccination programme to gain momentum!

1 Like
#12

I completely understand that. This time next year (if not sooner) I hope you will be off on one off your planned adventures! Very frustrating to give up your job and then this happen. Keeping everything crossed that things improve soon. We are both lucky to have such good friends and family around us x

2 Likes
#13

Hi @Carolly a great big welcome to our forum and you have already shown it’s value, we are not alone.
I remember feeling so alone at diagnosis, the only person in the world in my position with the world going on as usual around me, in a sort of bubble with all those thoughts, feelings and especially fears.
How could I explain to others what I did not understand myself.
I can understand that feeling of wasted time during Covid,
I am so glad that you have supportive family and friends, it has been a year of Zooming, Skyping texting and phoning people for me and not waiting for them to ring me and looking at their behaviour not mine. Our phone bill has risen dramatically !!
I think perhaps now is the time to write lists of what you want to do and where you want to go in the future. I have heard of people planning complete trips in their lists.
It has given me the opportunity to reassess my life and decide what I really want to do and who I really want to see in the future.
We are all supporting each other through Covid times and beyond on this forum. take care and stay safe.

2 Likes
#14

I echo @Erica ‘s comments. I was completely alone at my diagnosis and had no idea what questions to ask as I had never heard of the disease they told me that I had got. I always imagined that it would be like it is portrayed on TV when a doctor tells you that you have cancer and was shocked to find that they were a lot more detached and less empathetic. I’m sure they mean well but they must get a lot of people in the same position and can unintentionally drift into a state where they can no longer put themselves in a patient’s position.

2 Likes
#15

Hi Erica, thank you. I have tried to get my haematologist to explain, but I think it’s a matter of us being on different intellectual levels! I also don’t think it helps as I did a human biology degree so I think he thinks I understand more than I do!

1 Like
#16

Hi Nichola, thank you. My biggest worry is schools going back right now. I am fine with shielding at the moment, but when they go back it makes proper shielding impossible as there is no exception made for shielding families. If we don’t send my daughter back we will be reported to the local authority.

1 Like
#17

Yes @lousyT that is a dilemma and there are so many aspects to consider, please let us know how you are dealing with it as a family?

#18

Hi Carolly, so sorry just saw your message the other day and it’s my first chance to write back when my daughter isn’t around!

Your experience sounds very similar to mine! I think mine is like CLL except it is CD 5 negative and arises from the ‘marginal zone’! It’s difficult as an official label makes it so much easier to explain to others and to find your ‘tribe’ on groups. You can cross reference other people’s experiences if you have a specific group. Watch and wait still baffles me…what exactly am I watching and waiting for? My bloods are checked and my lymphocyte count is going up, but not dramatically, but at what point do you need treatment? My consultant said it’s not just about lymphocyte counts but other things too and asks me to go through my symptoms, but I have other medical issues going on and so am never sure which are relevant! Nice to know I’m not alone! x

1 Like
#19

Hi @lousyT, I have found that medical people just sometimes speak a different language and talk so quickly. I have learnt to really persevere asking for clarification, saying what does that mean for me in practical terms and can I just write this down please. It also helps to have someone as a note taker with me. You deserve to understand so you can make informed decisions.

#20

Hi @lousyT, me again, watch and wait is also called active monitoring so it means taking regular tests, they can be daily to annually.
I think the consultant means that it is not just charting the the fluctuations of test results it might be symptoms (+others) like:

  • Weight loss that is unexplained
  • Bruising or bleeding that is unexplained
  • Lumps or swellings
  • Shortness of breath (breathlessness)
  • Drenching night sweats
  • Infections that are persistent, recurrent or severe
  • Fever (38°C or above) that is unexplained
  • Rash or itchy skin that is unexplained
  • Pain in your bone, joints or abdominal
  • Tiredness that doesn’t improve with rest or sleep
  • Unusually pale complexion (pallor)
    Also our medical history might be taken into account.
    I am not a medical person and you seem to know a lot already.
1 Like