Sorry for the long post but I don’t know where else to reach out for help as I don’t want to worry my family.
In April we noticed changes in my son, tired, not his usual self, pale/greyish in colour. We put it down to needing a break from school and enjoyed our family holiday. Whilst on holiday my husband noticed our son’s glands were swollen but I just put it down to him being run down and said we’ll keep an eye on it but when he was asking to go home after only a few hours of being out and having fun we made the call to see a doctor.
We saw a nurse and she thought he may have had tonsillitis and not told anyone (very him, he’s a tough cookie) She did bloods just to be sure and said if I wasn’t happy at all to come back. Well after a few days I noticed my son’s neck had a swelling on it that was visible just looking at him. I rang the doctors and they saw him that afternoon.
The glands in his neck were sizeable (3cm being the one that I was most concerned about). He also felt his other lympnodes and the ones in his groins and arm pits were inflamed but they have since gone down.
He did more bloods to check for glandular fever and a general blood count again, all came back negative again.
We were referred to ENT and they saw our son within the 2 week protocol. At that appointment they did more bloods to rule out random viral infections and anything else that could have caused the inflammation. They did an ultrasound as well, whilst the bloods came back all clear again the ultrasound report said it did not look like a reaction to an infection.
We got the results from the tests on the Friday and the following Monday (he actually had surgery on Tuesday as the emergency list filled up) he was in for surgery to have a biopsy on the lympnodes as they weren’t happy, they ended up removing 2 of the larger nodes.
This was the first time that doctors had mentioned the C word but we’re being very discreet as our son is only 8 years old.
I asked the consultant what else it could be and they said it’s either a reaction to an infection (which the ultrasound did not think it was, and the bloods have no trace of infection) or a form of cancer.
It’s been two weeks this week since the surgery so we will hopefully find out this week some form of information.
We have a consultant appointment already booked in for 4 weeks after the surgery date.
What I’m looking for is advice on whether people have actually received information at the two week part or have had to wait till the consultant appointment.
We have done so well in keeping calm and distracted but today feels like were standing on the edge of a cliff waiting to jump off. We’re very pragmatic people and even just writing this it seems very obvious what we’re looking at but I’m sure plenty of you will understand the hope that we are holding onto.
Firstly, I hope you and your family are getting through this difficult situation and totally understand and empathise with your concerns, worry and angst for are feeling.
The wait doesn’t help especially in the current climate especially when the word “cancer” gets mentioned.
I would probably expect a consultant to give results as they are going to be more knowledgeable and be in a better position to analyse results and answer questions regardless of the diagnosis.
With your son being so young… I’d expect if something was wrong they would fast track it as child care is often different to adult care.
Apologies I’m not expert or have the answers you seek… but my thoughts are with your son, you and the family that’s it all goes ok…
But if you’re needing further guidance or support through this difficult time, the bcuk support line are amazing and will hopefully be able to put your mind at ease
Hi @Joicebags I am so glad that you have found us and I can hear the obvious fear and anxiety in your post exacerbated with your caring and loving maternal instincts.
You show so well the complexities the medical profession have in making a definitive diagnosis as so many conditions having similar symptoms.
If the medical profession haven’t made a definitive diagnosis yet we, with no medical knowledge certainly certainly cannot.
However what so many of us can relate to are your obvious fear, anxiety that waiting and the feelings of not knowing and fearing what you feel is the worst.
As @Rammie18 says you have entered the world of waiting on others for tests, results and appointments, it is a horrible time for you waiting and my mind goes off like a washing machine in all directions.
I was diagnosed with a blood cancer 18 yrs ago and I am still here and enjoying my life, I know your son is many, many years younger than me !!!
The advice I would give is that you look after yourself and keep talking and listening to your son about how he is and how he is feeling.
In my experience children pick up on their parents feelings, looks etc. If you have other children it can be useful to include them so you are as a family unit.
As @Rammie18 says the Blood Cancer UK support line is there if you would like to talk to someone.
Look after yourselves and be kind to yourselves and please do let us know how you get on.
Hello @Joicebags - I feel for the situation you are in as any wait for results and possible diagnosis is difficult, however when it is mum and dad for a little 8 year old this is a very different situation and my thoughts go with you. I haven’t been in your situation so can’t answer your concerns as to timing - except that as Rammie said it would no doubt be the consultant that would give the results to you and I imagine why an appointment was made for four weeks post surgery - when all the facts will be in front of the consultant to draw the conclusions - all things blood are complex so although others had concluded not infection they were just looking at one element and the true picture will come when the consultant and team have all the facts and can see the real picture. That does not however change you dealing with the wait for that. I know the secretaries of a consultant can be a good contact point for concerns (unless you were given a specialist nurse who are also very helpful) perhaps even to ask if an appointment can be any earlier to prevent your waiting too long as a mum and dad - although it may well be the test results would not be in any sooner.
As mentioned by others do use the BCUK helpline to talk and gain some assistance
We will all think of you
Thank you so much for sharing this. It sounds like you all have been through a really worrying time and as a mum the uncertainty and wait for test results really can feel like torture.
It does sound like you are doing so well under the circumstances and i am so pleased you have found us.
Please do know that, as others have highlighted, we have a free confidential telephone line which is open 7 days a week and please do give us a call if you wish to talk anything through- 0808 2080 888.
It sounds like the ENT team have been really thorough in both their investigations for your son and the screening of bloods. Unfortunately we do know that lymph node biopsy results, unlike blood tests, typically do take a number of weeks to be returned but it is quite likely you will hear of these results before your scheduled next appointment in 4 weeks.
As your son is only very young, there maybe some additional support that can be offered from other sources we can signpost you towards.
May i also ask how your son is coping and indeed if he is feeling okay following on from his biopsies?
We appreciate this time in limbo is a complete roller-coaster of emotions moving from moments of feeling strong & distracted to moments of complete unsettled panic. So please do know that this is so understandable and we are here if you do wish to talk anything through.
Do Take Care, Lauran
Hello Joicebags - I am so sorry to hear about your little boy not feeling well, what a worry for you and I know as a Mum we would give anything to swap places with our children when they are unwell. I hope that it is a case of ‘no news is good news’ as my experience with my own illness has been that any bad news normally travels fast. I wondered whether your Son has had, or been exposed to covid as this is still a virus which can affect us in so many different ways, especially children, and there is still a lot we don’t know about it. You are all in my thoughts and I hope that you will soon hear positive news.
Thank you so much for your reply everyone.
We are still awaiting results but after the advice from here I rang the receptionist and the Registrar who performed my son’s surgery rang me back and talked me through the next steps.
The results are currently with pathology and several doctors are looking at them. The registrar said directly they are looking for/ruling out lymphoma so we won’t hear anything until next week. It sounds strange but it took a weight off knowing that we weren’t going to get a phonecall this week so I have been able to just put everything to one side and get on with “normal” life as best we can. It was reassuring knowing that they are continuously checking on my son’s results so I feel we are in the best hands possible.
We have kept everything as simple as possible with our son. He knows he’s had two lymph nodes removed and they’re checking to see if he needs special medicine or not. He’s general tired and not his usual self, it didn’t help that he got an infection after the surgery so has been on antibiotics but we are guarding him as much as possible so he’s in fine form mental health wise.
I think next week will be tricky but I’m sure we will just take it one day at a time and keep busy until we know more. I’m very much trying to keep a level head and life as normal as possible and very much away from Google.
Thank you for everyone’s responses, it’s been really helpful xx
Yes, @Joicebags doesn’t it just help knowing some information and timings of actions, and trying to keep it just one day at a time if you can.
Please keep us posted and be kind to yourselves
Thank you so much for taking the time to keep us informed. This certainly does sound like he is in the best of hands and has a really supportive team around him. What a little trooper he is!
It also sounds like you are doing just just brilliantly under the most difficult of circumstances as a mum. I hope you are all able to have somewhat of a nice weekend together and do remember our phone line is open 7 days a weeks should you wish any support or to have a talk about anything at any time.
Sending you & your family lots of strength, Lauran
Really feel for you @Joicebags . It’s one thing waiting for results for yourself but much more harrowing waiting for them for a young child. I do hope things turn out ok for you all and your son comes through this. You’re in my thoughts and please let us know how things go.
I hope you don’t mind me getting back in touch. I hope you are all doing okay and please do not feel any pressure to reply to us.
You have been in my thoughts and i just wanted to check in and also remind you that our support service team are available 7 days should you need to talk anything through at any time- 0808 2080 888.
Take Care, Lauran
It’s been a crazy few weeks here. We got the amazing news that the biopsy shows no signs of cancer however they have no idea what’s wrong with him.
He has “reactive lympnodes” and they are keeping him under observation.
The moment we got the phonecall we were so relieved that we just took a massive breath. We thought that was the end of it but we had a phonecall from the consultant yesterday checking on our son and the new lumps that were forming. In our elation we’ve forgotten that he’s still actually poorly. By the sounds of it he will need more surgeries and deeper investigation.
For now we’re taking it from appointment to appointment and keeping everything crossed that nothing serious is the underlying cause of all of this.
Thank you for your support and thoughts x
Hi @Joicebags that rollercoaster of emotions that you describe so well.
Really good news that there is no signs of cancer, but they still do not know what is wrong with your son and perhaps more tests to come.
As you say all you can do is take it one appointment at a time and fingers and toes crossed.
Look after yourselves, celebrate the small wins and be kind to yourselves.
Thank you so much for updating us! What brilliant news!! I am so very pleased they have ruled out anything blood cancer related. I can only imagine the relief you all must be feeling.
In terms of his underlying illness and reactive lymph nodes, it is great to hear they are keeping him under close monitoring. In some occasions, enlarged/reactive lymph nodes can be a result often be prolonged viral reaction in children which I’m certain they will look into further.
Thank you again for updating us, I am just delighted for you all & hope your little one feels lots better very soon.
Take Care, Lauran