Hello Guys,
My son (aged 16) had his first GP about on the 14th August, he had 6/7 swollen lymph nodes on his neck, head, collar bone and in front of his ear, they all ranged in size with the largest being 3cm/4 cm (GPs sizing) some are hard, some soft, some movable and some not. He has had them at this point for maybe 5/6 weeks (ish)
The GP sent off urgent blood tests and said he would refer into secondary care.
The bloods came back clear.
Then on the 18th August my son woke up drenched in sweat, he then admitted that this had been happening a few times a week for a number of months. I panicked and took him straight to A and E, they were very helpful and preformed a chest X Ray and Further blood tests to look for infection.
The X Ray was clear.
The blood tests did not show any infection markers. He has had no coughs, colds, infections for a very long time so i expected this result.
we were given an appointment for Friday 4th September which was cancelled, we were then given an appointment for Thursday 17th September.
we attended this appointment and the Doctor found another lymph node on the other side of the neck, the groin and armpit are clear. so now 8 in total. Some of the other nodes have reduced and are now 1cm/2cm.
He had had no further night sweats and has not lost weight since his first appointment, in fact put a teeny bit on (I have been feeding him up)
As my son is in fact quite fit and well, they are unable to perform a biopsy as he does not hit any triggers yet to refer, they say his problem is chronic, I will have an appointment in 8 weeks in such time if the nodes are still there he will be classed as persistent so hit a trigger for a biopsy.
So now I am left in limbo, I am no expert but I know my child and I fear something is not right! He had swollen Lymph Nodes for a reason, 8 weeks or watching and hoping for the best has my anxiety through the roof. I have read so many horror stories of Lymphoma being missed.
Does anyone have any experience? Advice?
Thank you
x
Hi and welcome to the Online Community, although I am always sorry to see folks finding us and so sorry to hear about your son’s ongoing problems.
I myself was diagnosed with a rare type of Non Hodgkin’s Lymphoma way back in 1999. In my case my team had a good idea what I had but it still took a few CT scans, 6 biopsies and a further year to get the proof, that is blood cancers for you.
An 8 week wait when it comes to Lymphoma is not that long, even if it’s aggressive type. But you do need to monitor him during this time and get back to his doctor if any changes come along.
I have put a link at the end of my post to some good information about Lymphoma and the process of diagnosis.
There are over 60 types of Lymphoma and each one reacts differently so this may take time for the process to be worked through.
In my experience they won’t biopsy an area until they are sure it’s persistent, not an infection and large enough to get a good sample.
The Community has various support groups and a number cover some of the main types of Lymphoma but as this has not been confirmed it would be a total shot in the dark to start pointing you to any specific at the moment.
But the two groups below are the two general main types..... but as I said these are rather different with different treatments...... but mainly the same diagnosis journey.
General Non Hodgkin's Lymphoma
It’s always good to talk - our Macmillan Support Services provides lots of ways to connect. The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00. Clicking here will give you more information.
You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
We are always around to listen and answer your questions
All the very best.
Hi again, as you will see from the link I gave you there is a standard protocol for diagnosing blood cancers. Yes if the lymph-nodes reduce they won’t do anything so it is important that he does not get knocked off the radar so keep a good eye on his nodes but Lymph-nodes are very reactive and especially in a growing teenager.
You are a mum looking out for your boy so no you are not overthinking, but we have lots of folks come through the Community with the same issues and it turns out to be something other can cancer.
Yes, back in 1999 I had no symptoms apart from a small but growing rash on my back, nothing in my bloods, no lymph node issues, it can be that difficult and as a result some people can live for years not knowing they have Lymphoma.
Always around to listen and help as best as I can.
