Should I be concerned?

Worried you might have a blood cancer?
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Hi, I’m a 20 year old girl and am a bit concerned about the symptoms I’ve been having.

I spiked a fever a week or two ago that went up to 38.5 at its highest and never went under 37.5 at other times. It’s gone down now thankfully but I’m still either feeling boiling hot or freezing cold - no in between.

Over the past few weeks I’ve lost almost 10lbs, which is a lot for me because I struggle to lose weight at all. I haven’t been exercising at all and haven’t been dieting.

I’ve had a swollen lymph node on my neck that’s been there for about two weeks and hasn’t changed size, and one on my groin which has been there about three weeks and I think has gotten a little bigger.

I am no stranger to joint pain because I’m severely hypermobile, however I’ve been getting pain that I can only describe as being deep in my bones. It switches out between my legs, ankles, hips, arms, wrists, fingers, ribs, shoulders, jaw, back and neck. Something is always hurting.

I’ve had head congestion that never goes away, as well as frequent headaches.

I feel weak and breathless all the time. I’m breaking a sweat at the lightest of exercise, even walking up and down the stairs doing laundry.

My ribs feel bruised, my chest feels like there’s a weight on it. I’m getting sharp pains under my left ribs, and sometimes my right, and for the past few nights I’ve had a strange warm feeling down the side of my left ribs when trying to sleep.

I’m absolutely exhausted all the time. I’m either sleeping 12+ hours a day, or I’m struggling to fall asleep/stay asleep/wake up from sleep. I never feel refreshed and can’t focus on anything.

I had my period last week and it was very unusual (sorry if this is TMI). My periods are always heavy but normal consistency, this time it was a short period and relatively heavy but my blood was super thick, it basically came out in all clots.

I also have what’s called migraine with brainstem aura, where I get episodes of tongue tingling, facial numbness, vertigo, nausea, weakness, internal tremors etc. Yesterday I had my first episode since last September, and during the night last night I had another episode, this time making my legs mostly numb for an hour, which doesn’t normally happen. I was also struggling for breath so badly last night I nearly went to get my mum to take me to the hospital. I’ve had the internal tremors throughout today too.

I went to see the GP on Monday for my symptoms. I saw a paramedic because my case was classified as acute illness. He checked my chest and said I mostly look okay, except my chest sounds a little rattle. He said it’s probably a chest infection, and put me on antibiotics. It’s day 5 of antibiotics today but I don’t feel any better. The chest pains have spread to my sternum, I feel absolutely exhausted all the time and my bones really hurt. We went back to see him and he said my chest actually sounds a lot better, and everting else looks okay. I asked for a blood test because I get ill so often that I’m sure I have to be iron deficient, but he said no. He said it’s a Friday, they don’t have the people to do it, and he also doesn’t know what he’d be looking for in a blood test. He said there’s nothing they can do for me, and if I struggle badly for breath again the only thing to do is go to A&E.

I came out of the doctors crying. My symptoms come and go but there is always something there. Maybe it’s all my conditions flaring up at once and it’ll probably resolve itself in a week or so, but I’ve heard stories about people not catching things like leukaemia in time due to the generic symptoms and their lives being taken due to it.

Am I being dramatic? I feel like I’m not being taken seriously at all. My mum said I’m likely not helping myself by resting so much throughout the day, and says I should get up more to do things and get my body back in a routine, but I’m just so exhausted. I know chances are it’s nothing but I’d hate for something big to be missed if that is the case.

Should I go down the A&E route next? Should I wait it out and see if it gets worse?

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Welcome to the forum @asaun05

I understand you’re feeling very worried and frustrated, especially after your recent visit to the GP. It’s completely valid to be concerned when you’re experiencing so many persistent and unusual symptoms, and it sounds like you’re having a really difficult time.

Given the range and severity of your symptoms, and the fact that you’re not seeing improvement with antibiotics, it could be worth seeking further medical attention.

You are not being dramatic. It is very important to trust your instincts about your own body. Many conditions can present with vague or generalised symptoms, and it’s essential to get a proper diagnosis.

You are right to explore all avenues of support, and contacting one of the blood cancer UK nurses could be incredibly helpful for getting information and guidance.

You can contact the Blood Cancer UK Support Line to speak to one of their Support Service Nurses in confidence.
Here are their details:
0808 2080888

They can help you understand what might be happening and what questions to ask your doctors. They can also offer emotional support and signpost you to other sources of help.

Thinking of you. Do let us know how you are getting on.

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Thank you so much for your reply. I don’t want to be seen as a hypochondriac or anything to family or doctors because blood oxygen, heart rate and chest is all okay. It could easily be explained away to my other conditions flaring up as I have quite a lot of them, but hearing some stories about blood cancer diagnosis, it’s put the thought in my mind about my new symptoms.

Would you suggest I go to A&E if I have another bad bout of deep chest pain and breathlessness? I know you can’t medically advise but I’m thinking it might be my better option than going through GP again if it’s going to settle my mind about it. I know they’ll do blood tests there as well, and help with my symptoms more than the GP are.

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I’m really sorry to hear how worried you are right now – it sounds incredibly tough.

You might find it helpful to call 111. They are set up to provide medical advice and can help guide you to the right place for support.

You can also visit their website at https://111.nhs.uk/ for guidance.

Please consider reaching out to them. They’re there to help, and it’s a good next step for you.

Do take care

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Hi, just updating as requested. I’ve been having some new oral symptoms, mainly swelling of my gums, tooth sensitivity, mouth sores, a general weird taste in my mouth and also tasting a bit of blood when I cough/sneeze which isn’t pleasant. I’m on my last day of antibiotics and am considering maybe these are a result of that, so I’m going to wait it out a couple of days until the antibiotics are out of my system and if symptoms persist I’ll book in with the private GP next week, and keep A&E as an option in case I suddenly get worse. It’s tricky because a lot of my symptoms come and go a lot so its hard to know which are relevant and concerning, but at minimum at least I might be able to get a general blood test and take supplements if I’m iron deficient, which I’m suspecting anyway. Thank you for your support

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Hi @asaun05
I can see @Jules has given you good advice.
It’s always hard when we have a lot of symptoms as it can be a number of things.
What’s important is that you know your body best. If you feel like things are not improving I would definitely go back to your GP. Sometimes we have to be persistent which can be hard when we are feeling unwell.
Please keep us updated on how you get on.

Nichola

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Hi there
I would be factual in what you would like and confident
Simply you think you have blood cancer and you would like a blood test to rule it out.
Don’t deviate from that
Take a friend for support with you
Write down what you want if that will help you stay focused on what you would like

You can use the nhs constitution

4. The patient will be at the heart of everything the NHS does

It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services.

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Just had a blood test taken by GP. Fingers crossed it’s iron or thyroid or something and not anything bad :crossed_fingers:

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I glad that are listening to your concerns. Please keep us updated on how you get on :blush:

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Blood test results back this morning and everything clear - CBC, thyroid, kidney & liver function etc. It’s partly a relief but partly not because I still don’t know what’s wrong. She said she doesn’t know what could be causing the bone pain but it must be musculoskeletal. Lymph nodes are still up and have been up for about 6 weeks now, she had a feel but because I’ve had a few red spots come up on my legs for a few days she said it must be an infection, so I don’t know. I guess I’ll just wait it out until the red spots go away and see if the lymph nodes go down then, and hope the bone pain and fatigue subsides and I stop losing weight so fast so I can get back to normal :frowning:

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Hi, I hope it’s okay to post another update on my thread?

It’s now been about eight months since I first found the two nodes, they haven’t changed in size but more have appeared - one under my chin, two on the other side of my neck and one slightly nearer to my collarbone (not directly above it though which is a relief). I thought they’d go away on their own but nope. I decided to try and ignore my symptoms and started university in September. It’s been a struggle. I love my course but am constantly exhausted and in some kind of pain. I catch things ridiculously easily, which I thought was due to my MCAS and other health problems but apparently they don’t cause weakened immune system that directly. I’m still getting evening fevers about half the days of the week, still ridiculously fatigued (thank god I have my car up here now so I don’t have to walk everywhere - and I’m an extremely cautious driver and drink energy drinks, don’t worry haha), I’ve been really hot and sweaty at night (not drenching night sweats, but I have been waking up multiple times a night because I’ve been hot which is unusual for me as I’m always cold), my favourite jeans are now baggy on me (:pensive_face:) and for the past week I’ve been getting tingling and sharp pains down my right leg which is on the same side as my swollen groin lymph node.

I saw the campus doctor on October because I had a cough I couldn’t shake for weeks, I told him about the lymph nodes as I wanted them on my uni file. He took bloods and booked a chest x ray. Bloods came back completely normal apart from a positive past ebv infection which isn’t recent or current, so that led to basically nothing. The chest x ray was completely normal too. So I decided I was being a hypochondriac and it was probably nothing and decided to forget about it. The lymph nodes were still there in December and I started getting shooting pains in my breasts so my mum booked me in for an appointment with our family’s private doctor. She felt the nodes and said whilst they’re up they’re not rock solid and they haven’t gotten bigger so she wasn’t worried and told me to just watch them, especially the groin node. She did a breast exam and said it all felt normal. Again, I brushed it off.

It’s now the 5th of February. Since I’ve gotten back to uni, my muscle and joint pain has gotten increasingly worse, so has my fatigue and as I said, the tingling has started. It’s gotten so bad I now use a wheelchair part time. I decided enough is enough and I need to put my mind at rest so I booked an appointment with a GP that is trained in oncology for the 25th, and called reception to be booked onto the urgent call line yesterday. A doctor called, listened to all my symptoms, asked all the B symptom questions (i have most of them) and then said she wants to book me in for a blood test to check for B12 and folate levels, and depending on those results she’ll consider a 2ww referral. Blood test is booked in for Monday (4 days from now) and whilst I finally feel seen and heard and hope I’ll get answers and can put my mind at rest, I’m so scared.

We found out a couple of weeks ago that my nan’s breast cancer is back. She’s had her scans and we’re waiting on the results, but everyone is terrified as it is. I’m hoping and praying my blood tests come back showing a B12 deficiency, as that would explain everything and be such an easy fix. If it comes back fine and I get put on a 2ww referral, I don’t even think I want to tell my family until I get a definitive yes or no answer. Chances are it isn’t cancer, and I can’t think of anything worse than putting the fear in them that I might have it too. Being 3 hours away from home, it’s easy to keep it hidden practically, but I know they’d be devastated to hear I went through this without them knowing. It’s just so stressful at the moment. I want to find out what’s wrong, why my lymph nodes are still up and increasing in number after 8 months, if it’s just some weird manifestation of my POTS and MCAS flaring up or something, but I’m not sure if it is that, because I contacted my specialist back in early December who put me on two new medications that should be working more than they are at this point (he said that himself) and he’s increasing the dose but I’m not sure if it’s those conditions that are causing my decline.

I’m probably just being silly and my nan’s cancer coming back has probably made my anxiety worse but I’m not sure how to deal with this alone.

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Hi @asaun05, thank you for updating us on your thread. I’m glad you’ve come back to share what’s happening, though I’m so sorry you’re dealing with all of this on top of the worry about your nan.

Firstly, I want to be really clear with you about something - you’re not being silly. You haven’t been a hypochondriac. You’ve been advocating for yourself with symptoms that haven’t cleared up. That’s a positive thing and you should be proud!

Secondly, if your symptoms (particularly the tingling/pain) worsen over the next 24 - 48 hours, or if you develop fever or feel unwell, please don’t wait for the blood test appointment. Contact your GP urgently or go to A&E if needed. Make sure any healthcare professional you see knows about all your symptoms and how long they’ve been going on.

I’m really glad to read that you’ve got a doctor seeing you soon and booking you in for a blood test, and I wanted to draw your attention to a new NHS England initiative called ‘Jess’s Rule’, requiring that if a patient presents 3 times with the same, persistent, or escalating symptoms without a clear, working diagnosis or improvement, the GP must formally review the case.

About whether to tell your family - I know this might feel difficult with everything happening with your nan. But carrying this fear and these investigations completely alone is a lot, especially when you’re three hours from home and feeling so unwell. Even if it turns out to be something like B12 deficiency, most families would rather know and support you through the worry than be protected from it and you have to face all of this worry by yourself. Only you know your family, but please consider letting them in if you can.

What I would say is that whatever you decide about your family, you don’t have to deal with this entirely alone. Our Support Services team is there precisely for situations like this. They’re a group of wonderfully kind nurses, and they’re not going to judge you or think you’re being silly. You can call them on 0808 2080 888 or email support@bloodcancer.org.uk.

Keep posting here whenever you need to, and let us know how you’re doing.

Take care,
Ceri - Blood Cancer UK Support Services

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Bloods were just taken, and now we wait. Keeping my fingers crossed it’s just B12 deficiency :crossed_fingers: thanks for the support

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Hi @asaun05, well done! I know that the waiting part can be difficult, so I hope you can find plenty to distract you until you hear back - I’m sure that uni is keeping you busy!

Do let us know when you get your results.

Take care,

Ceri - Blood Cancer UK Support Services

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Hi. The results are up already. The GP said everything is normal apart from a slight raised lymphocyte count (3.17) which she suspects is from a viral infection and should resolve on its own. I’m not convinced. I haven’t been ill with anything in particular. She said before that she was considering a scan/2ww referral based on blood test results, and as there’s no deficiency or anything I presumed she would’ve done so. Should I raise Jess’ rule and ask for a referral and/or scan? I’ve had these symptoms for 8 months, and only getting worse. I have a follow up on the 25th but it seems a long way away

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Another update. Called reception to request that either my case be reviewed or I be booked in to see a GP earlier. I’ve now been booked in for an appointment on Thursday, 3 days from now.

after some time alone with my thoughts and becoming a bit frustrated that I still haven’t received a referral or scan despite having no deficiencies, I went on their website and did the online eConsult form, explaining all my symptoms, worries and the newest blood panel results. It says they aim to get back to me within 4 days, but I wanted to make sure everything was documented in one place and to emphasise that it’s not far off a year of my symptoms now, they’re worsening and nothing suggests my slightly elevated lymphocytes are just due to something viral.

I feel like I’m going a bit over the top, but all I want is to someone to scan a lymph node, take a look and tell me ‘yep, definitely benign’. That’s it. That’s all I want. Some peace of mind so I know the worst is ruled out

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Hi @asaun05, thanks for keeping us updated.

You’re not going over the top at all. Eight months of worsening symptoms is a long time, and if your GP mentioned she was considering a scan or referral based on your results, it’s reasonable to push for it when there’s still no clear explanation for what you’re experiencing.

Well done for getting the earlier appointment on Thursday and for documenting everything through the eConsult. We would also recommend keeping a (retrospective and current) symptom diary where you write down when symptoms started, how long they last, and if they change or worsen.

Our Support Services team is there if you need someone to talk through any of this with whilst you’re waiting for Thursday’s appointment, and you can call them on 0808 2080 888 or email support@bloodcancer.org.uk.They can also help you plan what to say / ask at your appointment.

Keep us posted about how Thursday goes. You’re doing all the right things by speaking up and making sure your concerns are heard.

Take care,

Ceri - Blood Cancer UK Support Services

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Thank you Ceri. I know chances are it’s not anything nasty as might just be my health conditions flaring up, but it’s concerning me that the new meds my specialist put me on in November haven’t worked as he thought they would. It just feels like I’m more and more tired each day, getting new worsening symptoms and nothings being done about it. I know my lymphocytes haven’t increased by much, but it seems odd to me that they were 2.52 in October (normal) when I was actively unwell and coughing, and now 3.17 when I have no acute illness. White cells are exactly the same, and red cells & platelets have gone down a tiny bit but are still perfectly normal. My bloods just aren’t reflecting how I’m feeling at all, and I’m confused why :disappointed_face:

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Well done for fighting your corner. It shouldn’t be this difficult but I am so glad you are pushing for things.

keep us updated x

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Had my appointment this morning, it went really well actually! The GP was lovely, listened to everything I told her then did an examination. I could only feel 3 lymph nodes on my neck and 1 on my groin, she could feel 6 on my neck, 1 on my armpit and 1 on my groin. She said they’re small so them alone wouldn’t be too much of a concern but due to my other symptoms she’d feel better having me checked out by haematology or scanned just to rule out the nasty which is what I want (even though she said lymphoma or any other malignancy is extremely unlikely due to the size of the nodes which I agree with). She called haematology whilst I was in there and requested either a scan or 2ww and they said they’ll contact me within 7 days. Feeling so relieved I’m finally going to get some peace of mind!

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