Hello everyone,
I'm new to the forum and joined because I don't know how else to manage this. My son has not yet had his biopsy but has been told by an A&E Dr that lymphoma is the most likely cause of the sudden swelling on his neck.
He woke up 48 hours ago with a huge lump on his neck. He went straight to A&E where he baffled the nurse and consultant. The lump feels like it's on his muscle over the lymph node.
He had blood tests, ultrasound, CT scan and chest xray and after all of that he was told byva different Dr that it is likely to be lymphoma.
He has a biopsy booked for Thursday. In the meantime, the lump seems to be growing and he told me last night that the Dr seemed to expect this and that if it begins to restrict his breathing then he has to go straight back in to A&E.
I'm wavering between believing that it's madness to think it's cancer and that the Dr was too cavalier in telling him that it is the most likely cause to believing it is cancer. The wait for the biopsy is hell enough but from what I've read it then takes a further 2 weeks for the results.
Is it usual for lymphoma to present so dramatically and so suddenly? Does it mean that this is particularly aggressive and by the time he gets a proper diagnosis it'll be too late to treat? What if the lump gets so big that he stops breathing in his sleep?
He is in his mid 20s and lives a two hour drive away. His brother and I drove over there to pick him up and bring him home for however long he wants to stay. His biopsy and any treatment will be in the city where he lives and his brother and I will try to be with him for every visit.
How do I comfort him?
Any words from those who have been down this path would be very welcome please.
Many thanks xx
Hi Maze50 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (NHL) eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well.
This is a challenging and worrying time for you all but the first thing to understand is that on the whole Lymphoma is very treatable with good results.
From reading through your post it looks like he is still in the diagnosis stage but as he has yet to have a biopsy….. and most likely other tests like a CT/PET scan the actual type of Lymphoma has not been confirmed.
So I am assuming you joined the first group on the community that had Lymphoma in its name…… there are actually 60 types and sub-types of Lymphoma so it will take time to get a clear diagnosis and treatment plan.
The symptoms he is having I can identify with as in late 2013…. 14 years into my journey with my type of low grade NHL I was having the same challenges.
It looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted.
I had an initial 15min blast of chemotherapy and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner….. I then went on to have more treatments.
As scary that this is the treatments used for Lymphoma are very effective.
There are three main groups of Lymphomas with Hodgkin's Lymphoma being a specific group that tends to be quick growing but very treatable.
There are two groups of Non Hodgkin’s Lymphoma with Low-grade non-Hodgkin lymphoma being slow growing but is seen as a life long condition that is incurable but very treatable (this is what I have).
The other group is High-grade non-Hodgkin lymphoma these are quick growing but can be cured.
As I said the Diagnosis of Lymphoma can take time and this is important as getting the right ‘type’ then sets the treatment plan.
This link Questions to ask your medical team about Lymphoma will help you and your son to ask the right questions to be able to understand the journey ahead.
Be encouraged and in turn encourage your son that Lymphoma is very treatable and even the more aggressive types. As I said I was diagnosed 24 years ago, I am turning 58 next week and I am doing great.
I have said enough, have a read through some of the information I have given you and please do come back with your questions and I will help you out as best as I can ((hugs))
Hi again Maze50 so the CT scan will highlight ‘areas’ of concern that need to be followed up further.
Just last year I had both a CT and MRI and areas of concern had to be followed up using a biopsy. In this case it was my Colon and Prostate…… but nothing of concern was found.
So that was a long way of saying that they can’t see Lymphoma on a scan so biopsy is the main diagnosis tool.
Results are normally 7 to 10 days but some of my biopsies were sent for specialist testing (remember there are 60 types) so it took about 6 weeks…… even although his results may come back in say 7 to 10 days….. all the information would then normally go before the hospital Multidisciplinary Team (MDT) where consultants from different departments agree in a treatment plan.
He most likely will end up being put under Heamatology as these are the blood cancer specialists…… Lymphoma is a cancer of the blood and Lymphatic-System.
I have always had incision biopsies for my Lymphoma, fine needle can tend to be inconclusive…… but at the same time I had a CT guided fine needle used to diagnose my asbestosis.
Getting a cancer diagnosis at his age is rubbish and shedding some tears helps the acceptance and unloads some of the emotions…… and you are allowed a few tears.
My journey (See my story) was rather complicated and thankfully not many people have to navigate this but as I have a very complicated type of NHL it needed some significant treatments…… and yes, I remember sitting in a local coffee shop with my wife after we had a very challenging conversation with my consultant and the cup was filling up with my tears.
Get to understand Lymphoma…… don’t do random Google searches.
All the links I used have been taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
Don’t fudge this, if he has Lymphoma then it is what it is. Lymphoma is the 5th most common type of cancer in the UK…… but I will keep repeating that Lymphoma is very treatable and there ‘is’ life and a future after treatment.
When someone gets a cancer diagnosis the word ‘stage’ is often used…… Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis……. in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies:
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
These groups are here to support and to answer your questions ((hugs))
At this point in time he/you don’t officially know what of the 60 types of Lymphoma this is so keep an open mind as you read stuff through.
Yes Lymphomas are all blood cancers just like different types of fruit all come under the same title ‘fruit’……. but we know they are not the same……. This us the same with Lymphomas.
Some people can have Lymphoma and not need treatment for significant periods of time.
Others may have one set of treatment and go on to live the rest of their lives without relapse that requires more treatment.
Some people just need regular treatment…… I would fall into the final group but I am just over 8 years out from my last treatment, a treatment that was seen as my last role of the dice, but over the past 8 years a few new treatments have been developed so ‘if’ my condition kicks off again I have a fall back.
((hugs))
It’s all about prospective….. yes my journey has been hard but I am still living the dream.
We were talking to very good friends last week, he is the same age as me and he keeps calling me his inspiration…… but a few years ago he was diagnosed with Parkinson’s and last week he was told he also has Vascular Dementia….. and there is no light at the end of the tunnel for him or his wife.
Not a single negative word came out of their mouths - apart from “it is what it is and we get on and live life as best as we can - we just booked a month in Balearics for after New Year”
Its me who is inspired by them.
