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Any GPs about? Question about raised lymph nodes and MRI scan results

(12 Posts)
BikeTart Wed 03-Apr-19 21:40:20

My 23 yr old DD recently had admission to hospital with suspected meningitis which they treated her for but eventually diagnosed sceptacemia (sp). She had a relapse a week after discharge and was re-admitted and had another lumbar puncture and IV antibiotics.
The did a scan and noticed the lymph nodes in her groin are raised so she had a MRI last week.
Today she had a letter from the GP surgery asking her to make an appointment "at your convenience". She is now worried about what this means (so am I, but not showing it, obviously). I've said if they found something serious they'd have sent her the appointment, not asked to ring and make one (hideously deprived area of Kent, shortage of everything you can think of public service wise so it's possible she could ring every day for a week and not get an appointment).

Does this sound like a routine kind of letter or one of those 'keep it bland so as not to panic people (which is what she is thinking it is).

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HoozThatGirl Thu 04-Apr-19 12:06:23

I would take it as a good sign that there is no apparent urgency. I think with the NHS in general if it's serious they will ring you, if it's not you have to do all the running.

jinglebellmel Thu 04-Apr-19 13:28:47

I’m not a gp but I think they either ring or book her a specific appointment if it was something serious x

BikeTart Sun 21-Apr-19 11:02:52

I'm updating in case there's anyone around.
DD has a biopsy scheduled 29th and had a CT scan yesterday. She had further blood tests.

We've seen the haemotology consultant who examined her and ordered the above further investigations "as we don't want to hang around, we're looking at either a reaction to the sepsis or a smaller chance of malignancy".
I didn't know this but she's been having night sweats. No weight loss though.

I've been Googling and now I'm so anxious my throat keeps closing up. Am trying to remain positive when I'm with her. But I'm scared and I keep wanting to cry. She's the love of my life.

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jinglebellmel Sun 21-Apr-19 20:37:27

BikeTart So sorry you’re having this stress. Did they give you any idea of what they suspect/are looking for? A reaction to sepsis seems likely given your daughters history, so could be the nodes are taking time to go down after this? You sound like you’re being amazingly brave ad strong for her. Sending positive thoughts your way and hoping this turns out to be nothing serious flowers

iVampire Sun 21-Apr-19 20:55:21

Try not to google - the treatment for many blood cancers has been transformed in recent years, but there’s lots of older (and scarier) info still hanging round.

How long will it take to get the biopsy results?

This bit, where you don’t quite know what is going on, is one of the most stressful things. Wishing you all the best

BikeTart Sun 21-Apr-19 21:25:15

Thank you for replying.
It's hard to know exactly what they're looking for but her DF is in hospital right now with two unrelated primary cancers; of the tonsils (HPV p16 or something) and lung (smoking related).

There is family history, on his side, of cancer in females at a young-ish age.

So whilst the consultant used some vague terminology I think they're concerned about the lymph nodes that are raised which can't be felt or seen.

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iVampire Sun 21-Apr-19 21:51:42

Which nodes are they biopsying (is that even a real verb?)?

So sorry to hear about her DDad too. So worrying for you

BikeTart Mon 22-Apr-19 00:02:52

I don't know which ones, I think that might depend what the CT scan shows, and my google knowledge is that there are different biopsy types as well. Or maybe it won't be necessary to biopsy if the CT scan doesn't find anything significant, it's not clear to me how diagnoses are reached.

To be honest, her DF's situation worries me only to the degree that it distresses DD, and the pressure it puts on her to put his needs before her own (that's a whole different thread).

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iVampire Mon 22-Apr-19 21:08:57

I’m guessing the malignancy they want to rule out (and I really hope it will be ruled out!) are the various forms of lymphoma

So shout out to @tahitiitsamagicalplace and @milesjuppismybitch who, if they appear, might have useful things to say about the tests, timelines and treatments

Dinnerisburnt Mon 22-Apr-19 23:58:43

Back in the 90’s I had a biopsy on a enlarged lymph node, at the pre op appointment I read my notes, that was the moment that I realised my GP had suspected I had Hodgkin’s lymphoma, I literally had no clue until I read my file. It took 9 months from first docs appointment till treatment started - 6 months of chemo later I was ‘fixed’.

Sending you flowers and strength, live is tough at times.

BikeTart Wed 24-Apr-19 19:42:56

@Dinnerisburnt that's what I think they're investigating.

She says she is feeling fine now but I don't even know if that means anything in terms of whether she's actually fine IYSWIM

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