Hi everyone. I’m extremely worried that my husband might have blood cancer and I’m not sure how best to get it investigated. He’s in his mid-40s and always so healthy (I’m the one who gets ill all the time!), but for several weeks now he’s had a fever that comes and goes; night sweats; and an intensely itchy rash all over his body. The rash was dismissed by his GP as eczema (which he has a history of) but it’s a different level to what he’s ever had before. He’s been very tired too which we’ve blamed on the fact we have a young child, but it’s way above and beyond his normal tiredness and he’s just not himself. He’s had far more migraines/eyesight disturbances than usual too. I pressed him to contact his GP about the fevers and night sweats and they’ve ordered blood tests for next week, but having done my own research I know blood tests might not actually show anything amiss if it is blood cancer. So what can I do to help him either get diagnosed or get it ruled out? I don’t want to scare him by telling him I think it’s blood cancer but every piece of information I can find seems to point to that. I feel so worried and I just want to help him to get the right diagnosis and treatment if needed, but I don’t know how to do that. Thank you for any advice you can give.
Good evening @WorriedWife.
I can tell from your post how worried you are.
I am glad that your husband contacted his GP and that they are starting to look in to his concerns.
I know often, when we google symptoms, lots of different things come up. Please try to remember that the symptoms could be related to a number of things. However, I know that won’t stop you worrying.
Has your husband shared all of his symptoms with his GP. If not, I would suggest writing everything down alongside all of your all questions and make a face to face appointment.
How is your husband feeling about things?
Hi there
I can see your very worried
Everything you google is about the person the tests were done on
We are all individual so one test might differ to another person
You have encouraged hubby to contact GP and until he has bloods who knows what they may or may not show. Until results come in you can’t really do anything.
Keep a diary of symptoms and what has happened on that day
When rashes appear and if it’s been a stressful day etc
My blood cancer was diagnosed via a blood test and confirmed through other tests
Hello there @WorriedWife, your worry comes across so clearly and I really feel for you. Finding this forum is a great way to find out more about blood cancers and living with them, so that’s bound to help your husband should you choose to share with him what you’ve been worrying about.
I was diagnosed last year with Polycythaemia vera (PV) despite having no symptoms, and it was found after I had blood tests, like @2DB. They can be an amazing tool, I reckon. I still have monthly blood tests now to chart how my blood cells change over time and trust that they’re accurate. I like to follow along each month to see what they’re doing, helping minimise my anxiety about living with it all, and a semblance of control.
It’s really great that you’re supporting your husband and researching stuff to make sense of it. There are many, many blood cancers (something like 130, I believe @Erica said) and it would take a lot of research to understand them all, as I’m sure you’re finding already.
Personally, even though I knew I had a gene mutation that indicated my cancer, I didn’t read online about it until after diagnosis. What @Nichola75 and @Bitsy said is so true, there’s loads of different and generalised information out there, often inaccurate. I vaguely recall the only time I googled my supposed prognosis it said something like 5 years and I slammed my laptop shut—thankfully that was totally wrong!
Perhaps share with your husband how worried you are and what your suspicions are, as this may motivate him to get it checked out more thoroughly. A problem shared is a problem halved, as they say. With the two of you seeking medical clarity together it might feel less worrisome for you too. Maybe your husband would also like to offload about how it feels for him with all those unusual symptoms you mentioned. And of course he could join the forum!
Keep us posted @WorriedWife about how it goes next week with the blood tests, they’ll guide whether your husband’s GP refers him onto your local hospital with a haematology department.
Hi @WorriedWife welcome to our forum.
Everyone has given you great advice.
I can tell how worried you are, but perhaps Dr Google isn’t your best friend at the moment.
The symptoms you say your husband has perhaps could be there for so many reasons.
If your husbands GP knows all of your husbands symptoms, then as you say that your husbands GP has a course of action in motion, and that is to rule conditions in or out then perhaps it it a waiting game, which I know is horrible.
Perhaps all you can do is to really look after yourselves and try and divert your minds.
Please do post how you are getting on.
Dear @WorriedWife,
I am so sorry to read your post, I can hear how worried you are. I am glad you found us and found a safe space to write things down.
You have had some great advise here and I do agree that google isn’t always our friend although we are all guilty of going straight there.
I would say it is reassuring that he is having blood tests, this would always be our first recommendation as you would be surprised how much you can read from those results. It sounds as though he needs a thorough examination though so I would encourage booking in another face to face consultation with the GP if he doesn’t already have one? Can you go with him to the consultation, you could share your worries about blood cancer, although I do understand you do not want to scare your husband, but you may feel better knowing someone has listened to you and hopefully taken action. I have attached here some information that may help guide conversations with the GP: Blood cancer symptoms and signs | Blood Cancer UK
I have also attached here some information about initial tests that may be taken when investigating a blood caner - Blood cancer tests | Blood Cancer UK
If it would be helpful our phoneline is open from 10am and we would be very happy to talk things through with you, our contact details are here - How to contact Blood Cancer UK | Blood Cancer UK
We are very much here to support you.
Best Wishes,
Heidi J (Support Services Nurse)
Thank you so much to everyone who has taken the time to reply, for all the kind messages and for all the helpful advice you have given me here. I am deeply, deeply grateful.
@Nichola75, I had a chat with him about what he’d shared with the GP and it seems he’d left out a couple of things (namely the itchy rash because he’d seen another GP about that separately already). But he’s got a face-to-face appointment booked for the week after the blood test so I’ve suggested we write a list of all his symptoms for him to take to that to make sure they get the whole picture. Thank you for giving me the idea. To be honest I think he’s feeling a bit concerned about things now too… he usually brushes off any health concerns (and is always incredibly healthy!) so I think the fact this cluster of symptoms is lingering and he’s still not feeling right is starting to worry him, though he keeps trying to reassure me that he’s OK.
@2DB, thank you for sharing your experience with me. You make such a good point that there’s no point in worrying about what the blood results do or don’t show until we actually have the results! Thank you – I think I was just spiralling because I was feeling so worried and knew we were already waiting a week for the blood test, then however much longer for the results, and then knowing I might not even feel reassured if they came back normal. But you have helped me get that back into perspective and I really appreciate it. It’s helpful to know that a blood test was used in your diagnosis and I hope you’re doing as well as you possibly can be.
@Bitsy, thank you so much for this advice – it’s really useful to know that it’s a haematologist we should push to see if the results are irregular as I wouldn’t have had a clue what to ask for. It’s also really interesting that you would recommend a CT scan if required – I will absolutely look into this if necessary and I really appreciate the guidance from your experience. Thank you.
@Duncan, thank you for telling me about your experience with blood cancer. I’m sorry to hear what you’re going through but I’m glad you’ve found some ways of minimising the anxiety through monitoring your blood test results. I still feel too anxious to actually say the c-word to my husband because it just makes it seem too real – and I still really hope that I am wildly wrong about all of this! But I will definitely take your advice on board because you’re right, perhaps it would help him to talk about things too. And I will certainly come back here with updates once he’s seen the doctor.
… continued …
… continued …
@Erica, you’re completely right of course, and I’m not usually someone to think I’m a doctor because of a Google search. It’s just that I’ve struggled to find any alternative explanations for his symptoms at the moment and it’s hard to put it out of my mind. I’m really grateful for the advice I’m getting here and doing my best not to Google anything else in the meantime.
@Heidi-J-BloodCancerUK, it’s really good to know that blood tests would be your first recommendation as that makes me feel more confident that he’s on the right path to getting some answers. He now has a face-to-face consultation booked for after the blood results come back. I’ll discuss going with him – I think he’ll tell me I don’t need to as it would involve me taking an afternoon off work, but he’s already agreed to us putting together a detailed list of his symptoms to take to the appointment to make sure nothing is missed so hopefully that will be a good starting point at least. I will read through the information you’ve sent to help prepare as well – thank you. And thank you so much for sharing the phone line details – it’s a comfort to know it’s there.
Thank you again everyone for your kindness, empathy and support. I am very grateful to have found this forum at a stressful time and I can’t thank you all enough for being there.
Oh you’re most welcome @WorriedWife, thank you for your lovely empathetic response.
I’ll let you into a little secret—I rarely say the C-word either, except on here! In my household we’ve given it a silly name, which seems to have spread around our friends and family. Of course I take it seriously but also it’s kind of ridiculous to live with these illnesses, it can still feel rather surreal at times. Humour after diagnosis really helps!
Sounds like you and your husband are a great team and I’d say just barge into his appointment and join him regardless! With both of you it’ll be easier to take in details and facts and emotional support will be key. Thinking of you both.
It’s really good to hear back from you @WorriedWife.
It can be a very lonely place when you’re worried and things easily spiral.
I’m glad we have all helped a little and you now know we are always here for you.
Please keep us updated.
Sending lots of love your way x
Hi @WorriedWife just know all that you are feeling is normal
Fantastic you have spoken with hubby keep this line of communication going as you can support each other through this.
Sow the seed of going to appointments with him as his PA to take notes and you won’t interfere unless he asks and because you love him so much.
As patients we want to protect our loved ones from any pain and will try and be stoic
I know my appointments were where I could be mostly open without worrying family
Once I had my answers I felt confident in talking to my kids in a reassuring way.
Be aware he may not ask everything for fear of what he will be told
He will have all the feelings you have but express them in different ways denial is one of them
Communication is key you both have got this
I’m doing well thank you 
I’m not saying it is but get him to ask his GP if it could be Mycosis Fungoides or one of the other related disorders.These are a rare kind of Lymphoma which are called T Cell Lymphoma,most Lymphoma is B Cell,and frequently being in the skin.During the early stages(1A to 2A) they are frequently misdiagnosed as Eczema or Psoriasis.The later stages (2B to 4B)involve tumours and metastatic progression but obviously he would know if he had these.
A partial update for everyone who’s been kind enough to offer me advice and support so far. My husband had his blood tests done – we are waiting for his review with the GP to discuss them but our practice sends the blood results automatically and we can see his lymphocytes are high, his C-reactive protein is high and two of the liver results are high (ALT and ALP). I know some of you will be more familiar with what these things mean than we are, but we know they show something is wrong and are waiting to find out more. I now feel silly for worrying that the blood work might not show anything and anxious about what it all means, but trying to stay positive that we’re a step closer to finding out what’s going on and what we need to do about it. I’d be grateful if anyone has any guidance for specific questions we should make sure we ask the GP at this stage or specific tests we should be pushing for. Thank you so much.
Hi @WorriedWife as for questions to ask perhaps both of you sit down and write down all your fears, questions and practicalities so you feel organised.
Perhaps ask what the blood tests actually mean for your husbands diagnosis.
Have they ruled anything out or in.
Ask the GP what comes next.
Do the results indicate that more tests are needed, if so, what and when.
If you don’t understand something ask for clarification, I don’t speak medical speak.
My trick is to be pleasantly assertive and do not leave until you are satisfied.
You are a big step forward, I have only ever had a full blood tests.
Please do let us know how you get on and look after yourselves.
Thank you @Erica, this is really helpful advice. Will note down your questions and will definitely try to follow your ‘pleasantly assertive’ trick! Will update when we know more. Thank you.
Dear @WorriedWife,
Thank you for the update, I am glad your husband had the bloods taken and you have a follow up booked in. Please be reassured that you are now on the right path for getting answers. Please do let us know how your husband gets on at the GP and know we are here for you whatever the outcome and whatever you need. Our phoneline is always open so please do call us if it would be helpful - How to contact Blood Cancer UK | Blood Cancer UK
Best Wishes,
Heidi J (Support Services Nurse)
Thanks so much for the update.
Now we have access to our results it gives us more time to worry doesn’t it.
Just write everything down. No question is to silly. You could always give the helpline a call to talk things through before your appointment.
Please keep us updated X
Hi @WorriedWife
It’s an overall picture bloods are only part of that picture
Your GP is best placed to answer your questions
Don’t feel silly about any thoughts that you are having they are all perfectly normal until you get answers
I can’t think of specific questions so it’s hard to suggest tests at this moment in time
I would have a copy of these bloods to hand when your at next review with questions by the side of them
Why are these bloods high
What are they suggesting if anything
Will he need more tests