I am 19 and think I have cancer

[Missveryworried]

I’m so scared. I had glandular fever in November confirmed by a blood test. Was really unwell. Still don’t feel great 9 months on. My neck glands are swollen I’m tired all the time, had tonsillitis 3 times.

Had to beg GP to refer me for ultrasound of my neck. He refused first time. Have checked my NHS app and results are on there saying I need further assessment. Have googled results and it sounds like I have lymphoma. But GP surgery texted me to say to book routine telephone appointment. I just rang and offered telephone appointment on 1 September.

Surely I should have an appointment sooner or do they just not care?

Will try and post picture of what scan says.

I am frightened. My mum is on holiday so don’t want to bother her.

I had glandular fever severely too when I was 18, and it really did take over a year for me to feel properly better. The glands in my neck really did look like jug handles for about 12 months! They were really sore to the touch and swollen. I had multiple bouts of tonsillitis during this time too.

What I'm trying to say is, it can be a really horrible illness to get. People minimise it because it's often teenagers that get it, and it's treated like a bit of a lighthearted thing. But it actually lasts for ages and can really knock you sideways like you said.

Everything youve described really does sound, unfortunately, just like glandular fever. It does feel that horrible. Try not to scare yourself by Googling as it's extremely highly unlikely that you've got anything more serious.

People minimise it because it's often teenagers that get it, and it's treated like a bit of a lighthearted thing.

Agreed. I ended up week in hospital because it took liking to my liver. It can be really serious illness.

Necrotic does not mean cancer. It just means tissue that is dying off - the glands have got bigger to do their job fighting off the glandular fever and tonsilitis and are no longer needed. They will just be reabsorbed.

But the results say that follow up is needed, they do not say that urgent follow up is needed. 1st September is just over a week away, so that is fine. Tell the GP your concerns and they will be able to further clarify the results.

@Missveryworried

firstly, don't panic! If it had been very serious, they'd have contacted you to make an appointment.

BUT if you are feeling crap still DO NOT be fobbed off, keep on it, I was a tiny bit older than you when I had GF which led to a liver problem which led to a metabolic disorder & so in. I was young & didn't push hard enough with my original GP (an older bloke who just kept saying, you've had GF it'll take time & virtually patting me on the head) by the time I changed GP I already had a liver & metabolic problem.

keep on at them love, so much more can be looked into now (30 years later)🤗

Being checked out is a million miles away from being diagnosed with cancer - they will just be ruling things out for you. The full scan is likely to be because you obviously do need your throat properly looked at as you're unwell a lot. So many things could be sinister and usually aren't. I had the same experience at your age and was worried I was dying. I was so much better after having my tonsils out.

I had glandular fever at 20yo.
I wasn't really well for about 3 years after that. I caught everything going, was exhausted etc. I remember thinking I would never be well again.
Even now (nearly 30 years later) my glands come up every time I'm ill (never came up before) and if I am ill, I get exhausted very quickly.
Just take it easy and rest up and recover. I should have taken a year out, but I tried to keep going.

I am so worried that I can’t sleep. My second neck scan was meant to be yesterday but it was cancelled and now I have to wait another week. The waiting is horrific.

I keep thinking what if it is cancer and all these delays mean it is just progressing.I don’t understand why I am having a second scan of my neck when google tells me lymphoma is diagnosed by a biopsy but I have not even been booked in for one.

Feel like I am going mad 🥲

At a guess they need a clear picture of what they are going to biopsy, to help them decide.

Is your mum home yet?

I had my appointment today but it wasn’t even for an ultrasound. The doctor just looked in my mouth asked if I had ear pain and said it will be a 2 week wait for a scan. He didn’t even know that I already had a scan I had to show him the results on my NHS app.

So I have to wait for the scan and then he said it takes another 2 weeks to read it and based on that I might need a biopsy.

All this waiting is horrendous.

Yes my mum is home and came to the appointment she was the one who told the doctor I’d already had a scan. She asked him if he thought it was malignant but he said can only be diagnosed from a biopsy.

So sorry that you’re on your own atm.

I’m afraid the only way I ever got anywhere with GPs when I was younger was by employing sharp elbows and escalating to the next level if I felt I was being dismissed because of age. That was in the early 80s and I’m sorry to read that this is still happening. You have to persist and become a nuisance I’m afraid.

I hope it helps to tell you that my husband had very similar symptoms years ago after having been diagnosed as you were with glandular fever. Turned out he had something called Epstein-Barr virus, which presented as a lump in his neck and general fatigue. It took several months to recover. That’s a possibility.

In the meantime, be persistent. If you’re uncomfortable being forceful in person, drop letters in to the surgery.

All the best x

For anyone still reading I have another ultrasound on Friday. The doctor said they can only determine cancer from cells from a biopsy so not sure why I can’t just have the biopsy rather than another ultrasound.

You may have been booked in for an ultrasound with biopsy. Most biopsies in the superficial layers of the neck are done with ultrasound guidance.

Unfortunately it is not a biopsy just another ultrasound

Sorry to hear that your scan has been delayed, it’s hard not to worry but if it’s any consolation I had glandular fever at 15 and my lymph glands are still hard and swollen at age 50! They do sometimes hurt but usually no trouble - I’ve mentioned it to GP over the years and nobody seems to worry too much about it and I’m still alive!

One thing to be aware of is that you can be more susceptible to autoimmune conditions if you’ve had GF. I have an underactive thyroid which was triggered by pregnancy, and can also be hereditary (my mum had it). It felt very much like having GF again, overwhelming bone aching tiredness that didn’t go away no matter how much I slept (not a lot with a new baby!). So if your blood tests don’t include thyroid levels maybe ask for that to be checked too.

It feels like a long wait when you’re worried but you’re in the system and they will prioritise you if it does turn out to be anything worrying. Best of luck.

I had a battery of tests because of swollen neck glands and it was a virus . Took a good few months for them to go back to normal .

As hard as it is try not to panic.

Good luck OP. Hopefully it's just lingering virus x

I know it's impossible to tell you not to panic but try not to think the very worst.
Most investigations to check for cancer turn out to be nothing, the point is they check for the few that aren't.

Post-viral illness can take a real toll on your body and assuming you receive the all-clear you might find that you have people (even doctors) telling you to push through your residual fatigue & keep exercising. That would be the worst thing to do - just rest as much as you body needs to, its not a bad thing. It used to be called convelescing and is an important part of healing.

Do less than you think you can and rest for longer than you think you need. Keep up with the good nutrition your mum is promoting and incorporate relaxation exercises into your daily routine. 10 minutes a day is fine. Breathwork, meditation, mindfulness...whatever works for you.

Thankyou I so sick of worrying about it. I just want to know one way or other.

You can some advice and listening support from a charity like Blood Cancer UK, including for if you’re worried you might have it. They have an email, telephone and online forum.

Do you have a date for your biopsy? I’m so sorry you’ve been left waiting and worrying for so long.

No no date for a biopsy was told by doctor that I need an ultrasound and will then have to wait 2 weeks for the results and then he said I will need to wait for an appointment for a biopsy. I feel that they just don’t care and there is no urgency.

My mum told the doctor that if I was King Charles or Kate Middleton they wouldn’t have let me wait and wait like this!

Given that you’ve had GF it’s far more to be post-viral symptoms than anything nefarious. But even in the vanishingly unlikely event it turned out to be serious - you will deal with it.

Please don't be worried. If the doctor was in the slightest bit worried he would have put you on the cancer pathway which means you would have been offered an appointment within two weeks. Doctors work with the worse case scenario and then work backwards. Glandular fever can really leave you feeling unwell for months.

They can only tell cancer from a biopsy but they can tell if it is not cancer from an ultrasound.

Do you have the energy to kick up a stink?

I’d be back at the GP asking for the biopsy under the 2 week pathway and if you face resistance ask him to document on your record you are concerned about cancer and he is absolutely certain it isn’t and you don’t need to go onto the pathway. You can also complain to the practice manager.

Id also make the same complaint to ENT, and again be clear you are concerned it’s cancer and would like them to document they are absolutely certain it is not and why. They won’t be able to do this! Its ridiculous.