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Original poster

Suspected Leukaemia

128 replies

Larrythelamb84 · 21/05/2018 18:43

I found some lumps in my daughters neck this weekend. Wasn’t too worried (thought it was her glands), but took her to GP just in case. What he said floored me. It COULD be leukaemia. But it also could be a virus causing her lymph nodes to be inflamed. He found far more lumps than I did, but he won’t order the blood test for another 4 weeks to see if the lumps go down on their own...which would happen if it was a virus. But I’m not sure I can wait that long. She is 6 and otherwise fit and healthy. Is there any way of speeding up the bloods? Any private places I could take her to? Willing to travel anywhere in the UK if it means not waiting (and worrying for) 4 weeks!

OP posts:
user1300 · 23/05/2018 20:03

Where abouts are you? I'd go to a private paediatrician

BarbarianMum · 23/05/2018 21:57

No one is going to take your dd's blood "to put your mind at ease" - that would be medically unethical. The fact they are refusing to do it is a good sign - they are basically telling you that it is v v unlikely to be leukemia. And you say yourself - she's fit and well. That's not typical with serious illness you know. Constant physical tiredness, fever, lack of appetite, pain are more typical.

Longtalljosie · 23/05/2018 22:02

You poor love. Go back and insist on a faster referral. If he didn't think it was leukaemia, he shouldn't have mentioned it. As he did and you're - rightly - scared, he can fast track the blood test. It's within his power to do so. Remain polite and calm and tell him you're not leaving until he does.

Family121 · 23/05/2018 22:08

i would go straight to A&E

Original poster
Larrythelamb84 · 23/05/2018 23:00

I’m in Yorkshire, all private centres I’ve contacted will not conduct the test and are quite supportive of the GP. I’ve tried to remain calm and I plan to return to my GP next Tuesday with a view to really pushing the bloods. I’m obviously super parranoid and I’ve even got her in bed with me so I can check her temperature througout the night. My medical colleagues (I work For the NHS) have advised I don’t prod and poke the lumps as this will keep them inflamed if it is a virus...but I’ll admit it’s difficult and I do keep checking them! The one under her chin is now so small I struggle to find it, which I’m hoping is a good sign! I can’t go to A&E as it would really go against my NHS ethics, and she would probably bounce off the walls waiting up there for hours on end!!

OP posts:
natgt · 24/05/2018 12:29

I mean this kindly but you need to stop.

Your daughter has swollen glands which are reducing. No fever and has been off to dance class today so not feeling ill or lethargic .

No one is offering you the test because they don't think she needs it because there is nothing to indicate it's anything other than a virus.

Obviously if something changes go back but I think you need to step back and listen to doctors. The first doctor was an idiot for saying it.

Buddyelf · 24/05/2018 12:38

Can I just tell you about what happened to me and my DD that was similar to you. I took her to the GP when she was 3/4 because her glands were still up 2 weeks-ish after she'd been unwell. They checked her over and sent me away for another 2 weeks (so would have been the 4 weeks that you were told). After 2 weeks they were still up.
Back to the GP and sent for blood tests for leukemia. She got an appointment really quickly and she was all clear. She's a 'glandy' child. A sniff of a bug and her glands balloon. Hope all goes well - I know its hard but try not to panic.

Frazzled2207 · 24/05/2018 12:43

I think it's really shitty of the gp to worry you but not refer for a simple blood test but it also makes me think that he thinks that's very unlikely.

Hope you get your answers soon and that your daughter gets quickly sorted out.

viiswi · 02/06/2018 11:11

Hello

How is your daughter?

xx

Highhorse1981 · 02/06/2018 11:14

My friend was in very similar position.
The Doc was v worried and tests conducted within 48 hour
Fact your Doc bit pushing through indicates how unlikely he thinks it is leukaemia

LucheroTena · 02/06/2018 11:20

Hope she’s ok op. I think it’s terrible that the doctor mentioned leukaemia as a possibility then didn’t do the correct thing of ordering a same day simple blood test. Leukaemia is a medical emergency. If you’re worried, take her to paediatric A&E and tell them the GP mentioned leukaemia. They can get a paediatrician to check her over -and a blood test if there is even a remote possibility.

Abitlost2015 · 02/06/2018 15:21

Your GP should have told you to come back in four weeks of glands still up without worrying you. In a child with no temperature, no night sweats, no bruises in unusual areas the fact she is systemically well is more important than having swollen glands. Try to follow the GP advice and wait as it is the correct way to proceed.

LucheroTena · 02/06/2018 16:38

abitlost

A GP who is worried enough to mention to the child’s mother the word leukaemia, and then not do a simple blood test, is negligent. OP has said that the child is pale, with petechiae, large glands and underweight. And the GP mentioned leukaemia then sent her away for 4 weeks. Leukaemia is an emergency requiring urgent treatment. If the GP believes the child doesn’t have leukaemia, then fine. But don’t mention that to the mother as a possibility and then do bugger all about it.

Onceuponatimethen · 02/06/2018 16:44

I’m sure you could get it done by Portland hospital if you went down to lomdon.

Onceuponatimethen · 02/06/2018 16:45

Have had blood tests for my dd done there

opinionatedfreak · 02/06/2018 16:50

You don't know how the conversation went.

When a patient pushes you and asks a direct question you have to tell them the most outlandish of your diagnostic possibilities.

I see loads of kids having investigations for enlarged nodes. Can't remember the last one who had a malignancy or anything "nasty".

I would advocate sitting it out for the next three weeks, treating her as normally as possible.

peoplearemean · 02/06/2018 16:55

I think it's horrific for them to mention the word leukaemia then not offer a blood test for 4 weeks that's just ridiculous.

Similar happened to me when my daughter was a baby and was admitted to hospital with unusual bleeding - I was repeatedly asked if we had a childhood history of cancers and that the bleeding could indicate this which absolutely floored me. At least they did blood tests straight away for us though which as it turned out showed a bleeding disorder - someone bleeding unusually and they have a bleeding disorder who'd have thought?!

I think they should choose their words more carefully and you should complain to the practice manager.

LucheroTena · 02/06/2018 16:56

Op said she wasn’t worried, so it doesn’t sound likely that she was pushing the GP for all possibilities. Good doctors don’t worry patients unnecessarily with unusual and terrifying things like blood and lymphatic cancers if they feel this is unlikely. She said the GP said “I don’t want to worry you but”. How could that not worry someone? And if the GP thought that diagnosis was a reasonable enough possibility to mention it to a parent they should have acted on it urgently.

Berries12 · 02/06/2018 23:54

Hi. Just wondering how your daughter is & if you made any progress? I found your thread after literally just joining mumsnet to talk about similar things. My 6 year son has swollen glands in neck & round collar bone 3 weeks after tonsillitus. Dr suspects glandular fever (he has been v fatigued and although improved can't do much & complains his body is tired all over). GP wanted to do blood test for GF and "didn't want to wait" in case it was something else (he was v pale too). Tried to have blood test yesterdat but they couldn't get any blood out of vein and then son went into shock. Another Dr came in & said not to bother. But what if isn't GF? The blood test the other Dr had asked for was doing various other things including full blood count, liver & kidney. Guess I'm just bit worried.....

Original poster
Larrythelamb84 · 04/06/2018 10:24

I took her back last week but the outcome was still the same, to wait. So we’re back again next Monday. I’ve since found out that my grandma died from leukaemia, so it is in the family so I’ll be mentioning that. In terms of how she is in herself, she’s just not interested in meals as such but will happily snack so I’m not stressing too much - she eats very little on holiday when it’s hot so with the weather being nice here, that could be why. The very large lumps have now gone, but my mother in law (who’s a nurse) found six tiny ones in her neck yesterday so I do think they will do bloods next time we go.

OP posts:
jigster01 · 04/06/2018 20:00

My DS was diagnosed at 10 mths after going to gp's with very enlarged bloated tummy ,( enlarged spleen) blood tests straight away taken to local hospital then blue lighted to Gt Ormond Street when results showed leukaemia..never really went home for 6 mths as intensive chemo.My DB had the same and sadly he died at 16..Dr said it wasn't hereditary just extremely unfortunate...my poor mum couldn't believe it ..but my DS is 27 now.

Zoflorabore · 20/06/2018 17:17

Hoping all is well op Flowers

Original poster
Larrythelamb84 · 21/06/2018 10:49

Frustratingly, I'm no further forward. The lumps are still there, but as she now has an ear and throat infection, the doctor said the blood tests would be inconclusive due to the white cells trying to fight the other infections. I feel so helpless. She is hardly eating (so far had a 4lb weight loss), her nose bleeds last for approximately 3 hours (I've taken pictures and noted all incidents) and shes just not herself. They wont give he antibiotics as its viral, so I just feel she has been poorly for weeks :(

OP posts:
Sparklesanddiamomdsforever · 21/06/2018 10:59

That is just awful, I can't believe they can't do more. Would you not reconsider going to A&E?

Zoflorabore · 21/06/2018 11:06

Second pp above over A and E, you must be out of your mind with worry.

It's quite possible that the other issues such as nose bleeds etc are a complete coincidence but I wouldn't be taking any chances and waiting.

Another example of postcode lottery. I honestly can't imagine my doctor dropping that bombshell on me and expecting me to wait so long.
My dd is a bit older than yours at 7, I would not be able to cope with this hanging over me. You've done amazing to get through the last few weeks.

Very best of luck, I know you work for the
NHS but if another parent was in your shoes I doubt you would judge them at all for bringing their child in. Hugs Flowers