I had a routine blood test just over two months ago which came back with total WBC 11.7, Lymphocyte count 7 and Mean Platelet Volume 7.1. I’d had an accident and didn’t feel particularly well but noted the instruction to repeat the blood test in a couple of months. Last week I repeated the blood test. A subsequent phone call from my GP let me know I had blood cancer with WBC of 12, Lymphocyte count of 6.94 and a Mean Platelet Volume of 7.2. I went from feeling very well and very happy to feeling very well and utterly miserable in a heartbeat. I am to be contacted to let me know whether I will be seen at the Hospital or at my GP’s surgery.
Hi @Mary1 and welcome to the forum.
I can only imagine how much of a shock that must have been, especially receiving the news over the phone and when you where feeling so well!
Can I ask what type of blood cancer you have been diagnosed with?
I feel like I have so many questions for you (I’m not going to bombard you with those) and I wonder if you were able to ask questions or were just taken aback by what you were told? I didn’t take much in at the appointment when I was diagnosed and needed somebody with me to listen to the details. I also needed another appointment for me to ask questions. Have they told you when you will expect to hear something regarding your follow up appointment?
The support line is so helpful and if you need to - and feel able to - it may be worth giving them a call just to talk things through.
Please take care of yourself today. Sending lots of love x
Thank you for replying. No named blood cancer was used. I haven’t had any intervention other than the second blood test and I am unclear whether the blood test is a definitive indicator of the diagnosis?
Hi @Mary1 what a great shock for you and you seem to be left in limbo at the moment.
I was diagnosed by a gynaecologist and just referred to my GP so I was also left in limbo so I know how it felt for me.
I then entered this medical world that spoke another language and what felt the interminable waiting which is horrible.
I have been on what they call ‘watch and wait’ or ‘active monitoring’ ever since, 19 Yrs.
That means that my blood tests and my symptoms are checked at certain intervals.
Unfortunately we have a bank holiday coming up which will slow things down for you.
If you would like to talk to someone the Blood Cancer UK support line as @Nichola75 says. However we will be about over the Bank Holiday.
Please do ask any questions.
I expect you do feel miserable, you have had a shock that has probably rocked your world.
This time will actually give you the opportunity to write down all the questions you would like to ask at your next appointment.
Perhaps just be ever so kind to yourself and really look after yourself, also diversion tactics can help me and Blood Cancer UK discuss this Blood cancer: mind and emotions | Blood Cancer UK Walking and fresh air, music or watching a light film also help me.
You are now part of our forum family so you are not alone, please do keep posting.
I’m really pleased you have found us. I am so sorry to hear of the shock you have been given. It sounds like you must have a lot of unanswered questions.
May i ask how you are feeling generally Mary?
Although blood results can be a very important part of a person diagnosis of blood cancer & can help identify an issue, often other investigations such as scans & biopsies which help conclude and confirm a diagnosis. You can read more about this here- Blood cancer tests | Blood Cancer UK
It is also expected that if your GP is suspecting a blood cancer that you will be referred to a haematology team within your local hospital for possible further investigation and expertise.
It is important that you are communicated with Mary so you are made aware of your GP’s plan, so please don’t hesitate to call them and ask for more information around their findings.
Also if you think it might help in anyways. Do know that our helpline is open 7 days a week should you prefer to talk things through with us- 0808 2080 888.
I hope you are provided with more information soon and do know we are very much here for you in any way we can be.
Do Take care, Lauran
Hi Mary1, sending hugs xx
My diagnosis last December came out of the blue too but 4 months on I’m doing ok.
There are a lot of different types of these cancers so until they tell you exactly what you have it’s difficult to say what will happen next. I had a biopsy to confirm mine, although that did raise the possibility of 2 types but treatment was the same so they didn’t rebiopsy. Then I had a petct scan to see where else the lymphoma might be - this all helps them grade and stage the cancer ( but these are different to other cancer grades so don’t get frightened).
Just be prepared that it might take a while to get a full diagnosis and don’t panic. Lymphoma isn’t like other cancers, if you need treatment quickly you’ll get it but equally if it’s safe to wait then it’s better to only have treatment when you actually need it, which might be years away.
If you have lymphoma join the Lymphoma Action UK fb group etc. Their website has lots of good info ( my doc gave me their booklets which have become my bible!).
Don’t google unless it’s reputable sources such as Blood Cancer UK, Lymphoma Action UK, MacMillan, CRUK.
My cancer is treatable but incurable and I view it like diabetes - a serious chronic condition that needs managing but one I’m more likely to die with than of ( my doc’s words).
Sending you very best wishes and hope you get answers soon x
How are you doing @Mary1?
I have been given an appointment for a blood test at the Hospital next week and a follow up phone call five days later. Thank you all for your kind and supportive words. I feel I’m functioning on auto pilot with the sword of Damocles over my head. Having reached my three score years and ten last year I was not unaware that the number of years ahead were significantly less than those behind me but I wasn’t quite prepared for a timetable .
Hi @Mary1. Thanks for the update.
I think we all understand functioning on auto pilot. Tests and waiting for results is often the hardest part of our journeys so take care of yourself in the up and coming couple
of weeks. Remember to write down all of
Your questions. Hopefully you will have more answers following your call X
Hi @Mary1 gosh do I remember the functioning, or not functioning, on autopilot. for a long time and I felt in a bubble with the world going on around me.
I am 73 and I hope to have many good years in front of me, my 70’s birthday was my best ever for me and my Colin the Caterpillar cake.
Be kind to yourself as @Nichola75 says the waiting is the worst time and make the most of your phone call and preparation perhaps is key, I have to write all my questions down.
Please let us know how you get on and take care
Hi @Mary1. How are you doing?
Well, of course, I’ve joined the club no one want to be a member of. Referred to kindly on my Hospital letter as low grade lymphoproliferative disorder. Could be much worse.
Hi @Mary1 sorry to hear that you have joined our club, but really pleased that you are now part of our forum family.
How are you doing?
Am I right in thinking you have found out in a hospital letter, if so, perhaps not the most empathetic, caring way of informing you and it would have really hit me seeing it in black and white.
What is the next step?
Have you any support?
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Thinking of you loads, I expect you are in a bit of shock, take lots of care of yourself and be kind to yourself
So sorry to hear your news. I expect you are feeling anxious and confused and may be a little angry that the news was delivered in a letter denying you to ask questions. A letter is so insensitive. Does the letter give any indication on your “low grade lymphoproliferative blood disorder” is going to be managed e.g. By the hospital or GP?