16 months old - Fear of lung cancer.

[mimmlw]

My son was born October 2019. No problems at birth, born at 37 weeks gestation at 7lb 13 so a good strong healthy weight - if he'd gone to full term he could have been 10lb.

He was breastfed almost exclusively until August 2020 when I began to wean him off - I wanted to give his immune system the best chance.

In September 2020 he developed a severe infection that was suspected as some kind of blood infection. Some strong antibiotics and in a couple of weeks he seemed completely fine. Then between September and November he had a number of smaller infections, rashes, high temps etc but nothing requiring admission.

Then in November 2020 he became very ill, and this was the beginning of my 'bad feeling'. He was admitted for a week on IV antibiotics and his temperature was near impossible to bring below 40 celsius. No particular chest type symptoms although they did a Chest X-Ray as he was having mucusy nosebleeds which showed evidence of 'chest infection'. One doctor in A&E could hear a noise on his lower right lung, although no other doctor seemed to be able to find it. They did viral swabs and found evidence of Adenovirus and Rhinovirus - althought they said to us that they have no idea why he was so poorly from just this. I queried whether he is possibly immunocompromised, but it was shrugged off and told to 'see how he gets on'. He recovered from this illness completely and we had almost a week where he was the picture of health - as far as we were concerned considering his state since September.

At the end of November 2020 he started with a cough and I could hear his breathing be quite wheezy. No temperature. Took him back to the GP who diagnosed chest infection as she could hear a noise on his lower right lung (same place as A&E doctor - but seemingly more significant). A course of antibiotics but no improvement. Continued to take him back to the GP, but they just kept fobbing me off with 'well kids get ill, and he has no temperature and is generally well so be grateful' in a nutshell.

We then get a call from the Pediatric Consultant from the hospital at the very beginning of January 2021 as a follow up to his November admission. I say he isn't well and quite frankly I'd like something done about it as I've been ignored since it started in November. While he is generally 'well' in that he plays and laughs, compared to other children his age, he is simply not the same. He doesn't eat anywhere near enough, he can be incredibly lethargic and has a lot of 'off' days where he seems to be in pain we can't locate and he just wants to lay on the sofa, as well as his communicative development being slow. He was put on a 2 week course of Co-Amoxiclav (strong antibiotics), weighed and measured (he has gained since last measurements, although has dropped a full centile and needs monitoring), ordered an X-Ray and given a follow up consultation. The X-Ray shows shadows on his right lung - which was said to be a 'bacterial infection' despite antibiotics making no difference whatsoever. No improvement so he was referred to a specialist children's hospital but was told it may be 4-6 weeks until he was seen. I raised a concern that I had started to see blood on his cot sheets when I woke him up in a morning - but was told it was most likely nosebleeds so 'not to worry'.

I started noticing watery blood on his sheets and comforter more often, but there was no blood on him and it was just a couple of spots. Then last week he had a large coughing fit and coughed a large amount of bloody mucus. He has since coughed blood every day since, and regularly cries out in pain. I took him to A&E at the specialist children's hospital who were shocked he has been left this long. They said they don't believe it is an infection at all but 'wouldn't like to make guesses at this point' and was given an urgent referral to outpatients that they said should have given us an appointment within 48 hours. I phoned up as I hadn't heard anything and they forgot to make the referral. We now have a video appointment for the 1st March, which I said wasn't good enough, although they have nothing sooner.

I'm honestly terrified. I think any parent's logical conclusion would be to assume cancer when there are undiagnosed shadows on their lung, a noise and coughing blood. Although I still feel stupid for even considering this is an option and I hate jumping to conclusions - I just can't seem to find any viable alternatives and I feel so let down by his healthcare providers.

Is it normal that the appointments when it is suspected aren't extremely quick? Is there anything I can do to get him seen sooner? Am I being completely paranoid? How did you cope waiting for assessments and tests? Every hour feels like a year and the not knowing is unbearable.

I haven't got anything to add @mimmlw .

This sounds so hard, especially with the cause being so unknown. I hope you're ok and that your DS is ok.

A private hospital appointment? This sounds terrible for you.

how horrendous
has cystic fibroses been ruled out?

I would have thought cystic fibrosis might be worth looking into. Can be diagnosed fairly quickly with a blood test. Important to check especially if you have other children or might have more.

I'm not a doctor, but I would think lung cancer extremely unlikely in a child. Things that are nasty but curable like TB would be more likely ( although still quite rare) Bad lung infections do leave visible scars on a lung that can be seen in an x-ray, so some sort of infection is possible.

Cystic fibrosis isn't in mine or his dad's family at all so not even been considered.
He's had basic blood tests and immunology bloodwork done and both are clear. He had raised white cells in September - November but since then they've been normal.

Not looked into private hospital although I'm worried about the finances of that

Lung cancer is extremely unlikely. Normal Newborn screening makes CF less likely but if he has repeated infections, is underweight or has digestion issues the doctors should consider it.

1 in 25 people with white European heritage carry cystic fibrosis mutations and it is recessive meaning you need a copy from each parent to have the disease so often turns up in children with no previous family history.

cystic fibrosis can occur spontaneously.
also, until 40 years ago or so sometimes went undiagnosed.
if you look back your family trees were there 'sickly' relatives who died late teens/early twenties?

definitely mention both cystic fibrosis and tb to the dr.

good luck!

I'm so sorry you're going through this OP. Is there any way you can go private? I had a similar experience of feeling 'neglected' with my DS. He used to get a lot of chest infections and breathlessness. I would go to the GP frequently, and A and E multiple times when his lips turned blue. Every time he would be given antibiotics and asthma medication and we'd be sent on our way. I always felt so fobbed off. We were admitted to hospital several times, once for 10 days, for oxygen and steroids, until he got better. I used to joke "see you again soon then" as I left, because I felt they weren't doing enough to get to the bottom if it and I knew we'd be back before long. Anyway, to cut a long story short, aged 6 they discovered he had a hole in his heart. He had heart surgery 4 weeks later and he was like a new child the minute he came around.
He never had asthma and all the various medications he took for it were unnecessary.
I feel the NHS are great once they know what treatment is required, but for me they were poor at diagnosis. We were passed from pillar to post. No one ever seemed to take control of our case. There was no continuity of care. I wish in hindsight that I had gone private. It was 6 years of incredible worry and anxiety and I felt very alone. What you wrote about the doctors saying he "seems fine, he's playing" etc, that just makes me tense up because I used to be told that all the time. It's incredibly frustrating. I would say push, push, push. Phone them every day. Even exaggerate a bit if you have to (I'm terrible for minimizing things and make it very easy for people to fob me off. Don't be me!). Write a letter of complaint. Call the managers/ go up a level. And keep a log of everything in writing. Send this mumsnet post as a letter to your GP.
Good luck OP. Please keep us updated. Sending you big hugs

Will definitely mention CF, although my instinct tells me this is unlikely as he isn't terribly mucusy and his cough tends to be unproductive unless there is blood. He also doesn't have any other telltale signs such as the salty taste or digestive problems, him not eating just tends to be when he is extra lethargic. Plus me and his dad both have small families and extensive family histories - the only diseases in either family are Chron's and cancers. Everyone else has been quite healthy!

@mimmlw Please do push for cystic fibrosis tests.

There was no evidence at all of CF in my husbands's family, but we found out that he is a carrier during fertility tests.

@whatisheupto thank you for sharing. This is exactly how I feel. I keep getting told 'youre a first time mum' and 'kids get ill'. I've thought about private although I'm worried it will be too expensive. I feel so scared of pushing the doctors too hard as I'm terrified they're going to think I'm a hypochondriac or paranoid.
His doctors have been useless. I received 2 letters today from the same consultant, dated the same day. One said he gained 800g so no need to worry! The other said hes dropped a percentile and needs monitoring. One was a copy of a letter sent to another consultant which had completely inaccurate information in like the start date of it all

@littlefish is it possible for CF to be in just one lung? It seems to be only his right that is affected

I hope they get to the bottom of what is causing your DSs symptoms.
His symptoms and the findings on his X-ray could be various no. Of respiratory conditions. It is very unlikely it’s lung cancer, especially in a child.
The NHS has a 2 week wait rule for urgent conditions. If your appointment was made today to be seen 1st March, then they are within the correct guidelines.
I would write down all of his symptoms and any questions you have, so you’re more prepared for the video consultation.

@Longroadahead08 thank you. I've started a detailed diary for him so they have a better idea

I would pay whatever I had to for a private consultation after being fobbed off so much. I'd be really worried too and you must be constantly stressed out with it all. I'm sure seeing unexplained blood on your babies clothing and sheets etc is really alarming. I'm far from an expert but I wonder if it's some longer lasting effects from covid? If the NHS aren't able to physically see your little boy any time soon then if you can pull the money together I'd enquire about a private appointment and ask them how it works if he needs scans etc with regards to payment. I've heard that you can have the consultations privately but they can refer you back to the NHS for the treatment.

That sounds awful. Poor you and poor him. Have you considered a just giving page to get some money for a private meeting? I know it's not up everyone's street but in times of need people can be generous and want to help x

To be honest I wondered about pneumonia when I read your description.

OP don’t be embarrassed or scared about pushing the doctors hard for progress. You’re the best advocate your son can have. If doctors think you’re pushy then that’s their problem not yours! You sound eminently reasonable and it’s not acceptable that you’ve had to wait so long - it must be agonising.
Re going private - is it possible to start the wheels turning on that now, just to find out who you might see and investigate the short term costs without committing just yet? Then if the March consultation doesn’t give you answers, you could be in a position to see someone else ASAP.

I'm going to look into private consultations. We're not loaded but we could make it work if necessary and from having a quick look it doesn't seem like the thousands of pounds I was expecting.
The specialists he's seen have said they doubt pneumonia, and he's been on lots of antibiotics. Viral is an option but it's typically upper respiratory from what I can tell.
And thank you for letting me know I don't seem neurotic. it's really comforting to hear that others would be the same

OP an initial private consultation is usually around £250. Treatment from then on can go back to NHS if too expensive or you could choose to pay for some treatment privately and then back to NHS. I would definitely take this route.

bare in mind that the 200£ or so for the consultation does not include the costs for tests.
imaging (x-ray, mri) can be eye wateringly dear, especially if sedation or ga is needed.
if you can, get copies of the x-rays that have been taken to show the consultant.

Yes I wish I had taken my son for a private consultation to diagnose what was wrong and then we would gave gone back to NHS for the heart surgery. It literally would have saved years of illness and worry. Start enquiring about who would be the best consultant to see. I was like you OP., I assumed it was totally out of my league and assumed it would be thousands and thousands. Not true!

I had completely forgotten but his godfather's mum is a consultant pediatric anesthesiologist! Not quite the right field but she's said to give her a call tomorrow and she might be able to give some advice or help somehow 🤞🏻
Does anyone know how I'd go about getting a copy of his xray?