Concerned but GP said not concerned about blood cancer “yet”

Worried you might have a blood cancer?
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Hi all I’m waning advice really, I’ve been in and out of the gp since January really. January I went in for what I suspected was a lump in my breast which I ended up sent for a scan and it turned out to be a lymph node that was raised. They didnt have concerns and it was left at that. I then went in for stomach pains and that was inconclusive. Then I got sent for a scan on what I thought was a lump on my jaw but by the time the scan was done the lump was gone, however the lady scanning me was concerned because all my lymph nodes were raised and asked if I had recently been unwell, which I hadn’t. It’s been a few months now and they’re still huge and I have more in my armpit, behind my ear etc as well as itchy skin, extreme fatigue, chest and lower back pain and dizziness/ weakness, & heartburn. I had a full blood count which came back with various abnormalities. My Serum C reactive protein was 17, my Erythrocyte sedimentation rate was 18, white cell count 13.8, neutrophil count 8.65, monocyte 1.05, red cells normal.

They want to re do a blood test in a few weeks but I’m getting worse rather than better. Do I wait or do I ask for more tests? If so, what do I ask do? The gp said “we’re not concerned about blood cancer yet” but it wasn’t ruled out and all my symptoms seem to point that way?

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Hello @Emilyc

Welcome to our forum, and thank you for taking time to leave your post. Reaching out can be difficult so I’m really glad you feel confident to do so.

I’m so sorry to learn of your circumstance, and I can sense that it is a really worrying time for you.

Whist I cant relate to your condition directly I am a blood cancer patient and so I can understand why you feel the way you feel, as I found things very difficult to begin with.

If you feel comfortable you can speak confidentially with our support services team for information and support 0808 2080 888.

I do hope you let us know how you get on

Take good care of yourself

Mike.

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Good afternoon @Emilyc

Thank you for your post and welcome to our forum.

We are so sorry to hear that you are going through an understandably worrying time.

I can see that Mike has kindly provided you with some great advice.

To add to this, we would advise that any worries or concerns that your reiterate these to your GP. It may even be a good idea to express that you are worried about a blood cancer as they can then refer you for further tests. If you are feeling worse, we would advise you to call the GP and explain how you are feeling.

Some of your counts are a little raised, but this can be due to various reasons, including infection. Not everyone has symptoms when they’ve had an infection but this can show up in bloods for a few weeks after the infection has occurred. GP’s often leave a few weeks between blood tests to see if these counts are then heading back to a ‘normal range’. If you had previously had an infection, they would expect these to be going down at your next appointment and if they haven’t or have increased they may complete further tests to investigate.

Immune responses can cause these tests to be raised and this includes auto immune conditions, sensitivities, allergies, viruses, bacteria and cancers.

Reactive lymphnodes can also occur when lymphnodes remain raised after an illness or infection (even if it has not had symptoms at the time) and these can continue to go up and down for several weeks.

However, I think you have done all of the right things in getting checked out and would advise going back to your GP sooner than they have suggested given that you are feeling worse.

We have a page Blood cancer symptoms and signs | Blood Cancer UK which may be useful to read over as it also contains questions you may like to ask your GP.

These include:

  • Could this be blood cancer?

  • Do I need another blood test? What will it look for?

  • Do I need to have any other tests?

  • Will I need any scans?

  • Do you need me to give a urine sample?

  • Can I be referred for further tests on a fast track or urgent pathway?

  • How long will it take to get my results back?

If you would like to talk to one of our support nurses then please do not hesitate to get in touch on 0808 2080 888. We’re here to listen and help. But do keep your team/ GP updated on how you are feeling so that they can support you as best they can.

If you start to become more unwell we would advise going to A&E/ ringing 999.

Take care & warm wishes,

Emma (support services nurse)

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Thanks everyone. I went back to the gp and have been given a referral to haematology due to my lymph nodes being enlarged for around 3-4 months (possibly longer) I will keep you updated on what is said. I appreciate the advice. Thank you

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Thought id post an update. I ended up getting referred for a ct scan and full bloods after seeing the haematologist who really was concerned about lymphoma given my symptoms and the ultra sound scan results. Ct scan came back showing only the neck lymph nodes enlarged as per the ultrasound scan however they didn’t think they were large enough to warrant a biopsy therefore the haematologist said she had to go back to the board to say it isnt lymphoma. She has now ordered another ultrasound scan and full bloods to see how things are. I’m still itchy, wake with a pain in my upper back regularly with no obvious cause an im SO tired by 2pm i am ready for bed. My ferritin levels have been decreasing with every blood test and im unsure its related but its now at an 8. I just want to know what is wrong because clearly something is amiss

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Hello there @Emilyc, welcome back to the forum. Sounds like you’re being really proactive seeking answers about your symptoms which is great. Well done seeing a haematologist and completing all the testing, doesn’t it take a lot of time with all the back and forth with tests and awaiting their results?!

I’m really sorry to read that you’re still tolerating those symptoms though, and for so long. Although I’m not a doctor, I do live with a type of blood cancer called Polycythaemia vera ('PV') and would urge you to keep seeking answers.

Don’t know if this seems too much or too soon, but if you feel your symptoms have not been dealt with in a timely manner then you can ask your doctors to rethink your diagnosis if you’ve presented with the same symptoms 3 times or more: NHS England » Jess’s Rule: Three strikes and we rethink

Another option is asking PALS/PASS to liaise with your doctors if you feel your healthcare needs are not being met. NHS PALS: What is PALS (Patient Advice and Liaison Service)? - NHS or NHS PASS Scotland: https://pass-scotland.org.uk

And I really would suggest giving the lovely Blood Cancer UK specialist nurses a call on 0808 2080 888 as you can pass your test results and other medical queries by them and receive personalised advice and support.

Hope that helps a little @Emilyc, do please let us know how you get on.

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Hi @Emilyc
I really feel for you. That “not knowing” is so incredibly draining. I’ve lived with a blood cancer diagnosis since 2018, and I can tell you that even now, every little twinge, itch, or scratch makes my mind race.

The trouble is, once you have these concerns, your brain naturally links everything together. In my experience, most of those “scares” turn out to be unrelated. For instance, I get terribly itchy because I get too hot at night, so I bought a brilliant fan which has been a lifesaver! I’ve also been menopausal since my treatment, which definitely makes me “hot and bothered” and adds to the itching.

I’ve also had plenty of raised lymph nodes over the years and many scans and biopsies. My first thought is always “relapse,” but thankfully, every single time it has just been my body responding to a minor infection or inflammation.

That said, it’s clear you aren’t feeling right—especially with your exhaustion and your ferritin dropping. Anaemia on its own can make you feel absolutely wiped out and “itchy.” It’s good that your haematologist is being thorough with more scans and bloods to get to the bottom of it.

If the worry is keeping you up at night, do give the Blood Cancer UK specialist nurses a ring. They are great at talking through these “limbo” periods and can help you make sense of the tests you’re having.

• Phone: 0808 2080 888

• Email: support@bloodcancer.org.uk

Keep pushing for those answers—you know your own body best. We’re all here for you.

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I’d not heard of that before and I think it’s great that’s a thing! I had my ultrasound yesterday and the lady expressed concern again so I’m just waiting for a call from the haematologist once they have received the results. Thank you for your reply and help!

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You’re most welcome @Emilyc, glad to have offered something potentially useful. Do keep the Jess’ Rule in mind if the testing drags on. Like @Jules and @GenesisDevice have suggested, the Blood Cancer UK nurses are just at the end of the phone if you’d like to speak with them, they really know their stuff. Glad you had the ultrasound, do please keep us posted about how you get on.

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Hi everyone I had my fine needle biopsy done on the 19th May, the node of concern is right by my blood vessel so they decided this was the best option. They said it’d take 2 weeks for results but I still haven’t had them. The longer I’m waiting the more anxious I’m getting

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Hello again @Emilyc, thanks for the update. Sounds like testing is continuing, so I hope you’re bearing up well with the additional waiting despite the anxiety. I’d say feeling anxious right now in between tests and their results is very natural, what could be more anxiety-provoking?! So I hope you can find yourself some fun, healthy distractions in the meantime.

May I ask how the fine needle biopsy went? I’ve not heard of those before. Forum members often mention bone marrow biopsies (BMBs), but I prefer the sound of the “fine” needle. Hopefully that passed uneventfully and it feels like things are being chivvied along a bit faster now.

From my non-medical perspective I’d say some anxiety is one way for our brains and bodies to alert us of potential danger. When the anxiety is too great to manage day to day stuff then there are ways to minimise it, maybe you’d like to read some tips from BCUK: Blood cancer: mind and emotions | Blood Cancer UK

Don’t forget you can call the lovely BCUK specialist nurses on 0808 2080 888 who can offer further tips and resources for managing that pesky anxiety, please don’t tolerate it alone @Emilyc.

Will you let us know how you get on please, not long in the grand scheme of things to wait for those results now.

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Thank you for your reply Duncan

The fine needle biopsy was uncomfortable but certainly not unbearable and I managed to do it without the local anaesthetic offered. It seemed a bit silly to poke me with a needle twice so I let them just get on with it.

I have a review with my haematologist next week so I am hoping to get the result then. I was told 2 weeks initially. It’s hard to know whether no news is good news or bad news or if there is simply a delay, that is what is causing the anxiety. I will certainly keep you updated whatever the outcome. Thank you for taking the time to reply to me

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