Anyone with experience of possible lymphoma in teenager?een

[Reallybadidea]

My daughter is 19 and living away at university. A couple of weeks ago she mentioned that she'd had a lump just above her collar bone for a few weeks. I encouraged her to go to her GP to get it checked out as I was aware that it can be a possible sign of Hodgkin's lymphoma. I thought that the GP would just tell her it was all fine, she has had every bug going in the last few months, but she was actually referred for blood tests and a 'scan' (don't know what kind exactly). Blood test was 'fine' according to the receptionist and she's had no further contact from the GP so I assumed it was all fine.

Started worrying about it randomly again tonight and according to NICE guidelines, a raised lymph node in that region requires an urgent referral to haematology/oncology when combined with other symptoms including night sweats and itching, both of which she has and she reckons she told GP about.

I don't want to panic her, but could this still be lymphoma in absence of abnormal blood tests?

I don’t know about teenagers but I have non Hodgkin’s lymphoma so know a bit about the diagnostic process.

lymph nodes can be up for a variety of reasons such as infection so a raised lymph node doesn’t necessarily mean lymphoma. If she’s had a lot of bugs her lymph nodes are likely to be up. However with the night sweats and itching it definitely needs checked out.

Blood tests aren’t conclusive I’m afraid. Often inflammatory markers are up if lymphoma is present but they aren’t always and there are other reasons why they could be up. Also, the GP should have tested for LDH (inflammatory marker) and without knowing what tests were ‘fine’ you don’t know what what was actually tested.

If your daughter was referred for a scan is that referral not still valid? It should be and definitely shouldn’t be cancelled on the strength of blood tests alone. When I was diagnosed my blood test results came through much faster than my scan appointment. I had an ultrasound, then a CT scan, then biopsies and a PET-CT scan.

One of mine had it in her twenties. Lump in her armpit. I know she had night sweats and itching too. One of the more bizarre symptoms was pain in her back after drinking alcohol. She also lost weight without trying.

It's three years ago now, and memories of treatment are starting to fade, but I do remember she had a scan, and it all flew into action after that. It did take 2-3 weeks before it was confirmed.

If she's been referred for a scan, she might need to chase up the appointment. Hopefully, it's just her body dealing with all the bugs she's had.

How are you doing this morning OP? If there is anything I can do - talk to your daughter etc then let me know.

I really do hope it’s nothing but she does need that scan.

I agree with chasing up the scan appointment - I went private for my initial scans as it was supposed to be faster but it wasn’t - it took them 3 weeks for the ultrasound then another 2 for the CT even though the radiographer who did the scan wrote on my notes that he thought it was stage 4 cancer (I didn’t know this until later in the process). And this was with me phoning a good 6-10 times to hassle. They had backlogs due to less diagnosis during Covid - not sure if these are cleared now. My understanding is that initial scans can take weeks (say 3-5) as it’s not until after the results of a scan that things are escalated as on the urgent pathway, though I might have that wrong and someone who knows more might be along to explain more.

GPs vary in how good they are - my own is excellent but I dealt with one other during the process who dismissed my symptoms and blood results. Luckily my own GP had already ordered a scan.

Thanks for the replies and that is so sweet of you @Dammitthisisshit to offer to speak to her. Thing is, rightly or wrongly, she seems totally chilled about the whole thing and I'm the one worrying about it! I don't want to freak her out and I also won't get much sense out of her until Monday because she's having a big weekend of partying 🙄

How's your daughter doing now @QuinnLovesEris Do you remember at all whether her blood results were ok initially?

I assume the scan referral is still in the system and we're lucky enough to have a bit of cover on DH's health insurance so wondering whether to try and book her in for a private GP appointment and/or scan. She has got a copy of her blood results on the NHS app and she's agreed to send me a screenshot at some point. It's so difficult with her not being at home and not being able to speak to the GP myself now she's an adult!

Fairly sure her bloods were not okay, and she had inflammation markers and something else. She got the all-clear in March after being diagnosed the previous September.

The GP cannot give you information about her. However you can write a letter outlining your concerns and flagging any issues you feel important.
Open with "I am not asking for information". And then something along the lines of
"however I am worried . . . " You can also ask that the scan appointment be chased.

Good luck. I hope your daughter will be fine.

That's good advice, thanks. What has worried me a bit more is that I mentioned her symptoms to a friend last week whose husband is a cancer specialist (different kind of cancer though) and he's been in touch unprompted this morning to say that in his opinion she needs to be scanned ASAP and that he will refer her privately if necessary 😭

Hey OP how’s things with your daughter ?

Ah thanks for asking. She chased the GP yesterday and they said that the scan referral has gone in but they haven't heard anything. She didn't ask whether it was an urgent referral or not, so we're no further forward really. She says she feels fine. Not sure what to do right now, but I think I'll talk to her when she's here over the weekend. I don't want to scare her over something that is probably nothing, but also don't want to regret leaving it longer if God forbid, it did turn out to be lymphoma. If she was under 18 I'd just phone the GP myself, obviously. So difficult when they're adult but maybe not taking things seriously enough.

Just bumping this to see whether anyone has any more thoughts.

Update is that the scan date has come through for April 28th. Daughter feels that the lump has got bigger. She says it feels smooth and mobile, fairly soft. On the referral the GP has said that the night sweats are probably due to her being on citalopram - although she's been on this for about 9 months and the sweats are only recent. Referral also doesn't mention the sweating.

Should I be pushing for her to be seen more quickly?

That's quite a wait, is it not meant to be a 2 week pathway for suspected cancer?

I would have thought so, but then maybe the GP thinks the risk of lymphoma is low so she doesn't qualify as urgent?

I was just reading on cancer research uk that people under 24 should be seen within 2 days.

She had bloods within 2 days and they were fine so maybe that makes the scan less urgent

Yes maybe, sorry didn't mean to worry you. My DH has symptoms right now and struggling to get a GP to see him so know what it can be like.

Hi OP, i would contact the medical secretary and ask for it to be referred urgently. Lumps in that area are suspicious and normal bloods do not exclude lymphoma.

Take his offer up. I’ve had 2 teenage family members with hodgkins. One was ill on diagnosis and one felt totally fine and bloods were ok. Scan for a different issue found it.
Don't delay OP it’s not worth the risk!

My daughter - diagnosed a few years ago - has had 'normal' bloods at every single test. So I wouldn't rely too much on blood test results. Sorry