Query lymphoma- asked to go in tomorrow. Advice please

[Louisa1980s]

36 year old female, 2 young dc. Clean bill of health until last year.
Started getting severe bruising on my legs last summer,.accompanied by a petechiae rash on my forearms and roof of mouth. Also lost 10% of my body weight (now 9st 8 and 5ft 5).
Had 3 months of tests / scans under NHS haematology plus private medical which showed nothing, despite some very odd blood results which eventually resolved. All symptoms stopped in September 2024
December 2024 I notice a swollen lymphnode In my groin. Go to gp,.FBC is normal. She documents my swollen lymphnode and that's that.
6 weeks ago I start waking at night boiling hot. Not sweating through sheets,. But just absolutely roasting which is out of character. I then notice swollen lymphnodes in my neck which reminds me to check my groin and these have grown too.
Go to gp who orders bloods.
Bloods came back yesterday
Elevated LDH (400)
Elevated IgA and IgM
Elevated lymphocytes
Elevated TIBC
Elevated serum ALT
Low iron

Got a call from hospital this morning, being rushed through for bloods at 7.50am tomorrow. Full body ct scan Friday and meet consultant next week

Cannot stop crying. How bad is this... genuinely. Is there anything else that could cause this?
I'm a need to know person... and I just want to know exactly what I'm facing. Lymphoma is what the consultant is worried about. How bad is that if it's what I have?
Someone please talk to me :(

A close relative was diagnosed with non-hodgkin's lymphoma stage 4 after weight loss similar to yours, white blood count all over the shop and night sweats. It was a bolt from the blue even though in retrospect once we new the flags for NHL it was obvious she had had it at least a few years.

Treatment was eight rounds of R-CHOP chemo and them maintenance treatment of Rituximab for two years. It was gruelling but she went into remission and with R-CHOP chemo many people keep their hair, she didnt lose her hair so never had that chemo look. Treatment for NHL isvery good now.

I wont lie, it was scary and gruelling but she/us got through it.

You dont realise just how brave you are until you have no choice.

The quicker they diagnose you the quicker the treatment can begin so the quicker you go into remission.

I am sending you my very best wishes.

When you next see the consultant ask what your neutrophil count is. With NHL a low neutrophil count is common so be careful of infections.

Thanks so much. That's honestly very reassuring to hear, and I'm glad all worked out for her too! 🙂

Sorry, me again. Also her spleen was full of it at 25cm when a normal spleen is about 14cm. Once in remission her spleen was back to normal size. Can you feel a bulge in you side? Her spleen actual bulged out slightly it had got so big by the time she was diagnosed.

Neutrophil count was on the low end of normal. Eosinophil count was abnormal (low too)

No obvious bulge, but a lower rub has started sticking out which I reported last summer and was dismissed as me being slim! Did she have pain in that area? I don't. Will upload a pic... this is in a mirror so is on my left side

Hello, I can’t give you many answers but didn’t want to read and run as I do have some knowledge of Lymphoma which I hope will help.

A few years ago my best friend was diagnosed with Non Hodgkins Lymphoma. It had spread and was in many areas/organs of her body, she was similar age to you with two young DC also. It was a terrifying time but she did 5 months of hardcore chemo, often it was injected into her spine and she was in hospital a lot (not just a day patient), but it did the trick and by the end of the chemo the cancer was gone. It felt like a miracle but it was down to modern medicine so please don’t give up hope, I appreciate the absolute fear you must be experiencing right now so I hope that reading this helps in some minuscule way.

of course it took time for her to heal emotionally and physically but the treatment worked, which was the main thing. She is fine now and she is living her life as normal.

My heart goes out to you to be in this position, I hope you get answers very soon and I wish you all the very, very best with whatever happens next xx

My brother had non Hodgkins lymphoma
By the time he was diagnosed, after his neck grew to a huge width over two years he was serious.
He had chemo, radio and his spleen removed.
He was 25, hes now 59 and his cancer has never come back.

My mum had Hodgkin’s lymphoma
She had swollen lymph nodes on her groin
She didn’t have any operations but she did have chemo and radiotherapy.
It was successful and didn’t come back

Take one step at a time and make sure you are not alone tomorrow.
From what I understand having been to all appointments with my mum the treatment for lymphatic cancers have been very successful. It’s certainly my own experience.

💐💐💐

The consultant told us that lymphoma is now seen more as a chronic thing rather than it will kill you cancer. The immune therapy such as Rituximab has been a game changer for lymphoma.

I would not be surprised if you rib sticking out is actually your enlarged spleen pushing on it

My brother had to have his spleen removed. He had no pain or swelling in the area. It was done as a precautionary measure.

My close relative didnt feel ill just night sweats and weight loss and low counts.

That is why it was such a shock. She had actually been pleased to lose some weight. Thinking back to that time it seems surreal that she had stage 4 NHL and we had no idea.

Try not to Google stuff. Everyone is different. You need to listen to your consultant rather than the internet.

I will say they will likely have a plan to get you through this. Looks like they’re very much on the ball. You can do this. You’ll feel better when you know the plan of action.

Honestly they will give you a treatment plan and you just turn up, get treatment on each of your appointments and get into remission. You can do this.

Hi,

Although it does sound quite scary at the moment, at least they are on this quickly! I wish you the very best and will be thinking of you! Please update if you feel you can! ❤️ I'm pretty sure you will get lots of support on here!

Agree with the above post. We are here for you. Best wishes for tomorrow.

We are going through this with right now.

Lymphoma is a chronic blood cancer … it is something that is “cured” but managed with treatment when symptoms become problematic.

People can go a long time living with lymphoma before they actually need any treatment.

Please understand that the way lymphoma is graded is NOT the same as for other cancers.

Very often by the time people are diagnosed they are at stage 4 … please do not panic as treatment for stage 4 is still as effective.

There are soooo many different types of lymphoma too , some are rarer than others.

I have found Lymphoma UK so helpful.

I'm glad you're getting such good advice here and really hope everything goes well for you at your appointment today.

How did you get on @Louisa1980s?

Thinking of you Louisa 💐

I am also thinking of you Louisa.

Thanks so much for all of the responses and well wishes. I went for bloods this morning, they took a lot. Next steps - full body ct with contrast Dye on Friday then meet the consultant Thursday next week.
I feel a lot more positive today, regardless of the outcome. I don't have that sense of doom that I had yesterday! I just hope I get answers this time as last summer was rough... going through months of tests only to get no diagnosis. My worry is that the same will happen again when clearly something isn't right...

Your PET scan will definitely show any areas of lymphoma if there are any .
This will be your diagnostic test , and it will also show the extent of any lymphoma so that they can decide on whether treatment is needed now or further down the line .

The haematologists usually have the PET scan results within a few days. 💐

It’s the not knowing that’s the worst isn’t it. You’ve got over a huge hurdle though and it sounds like they are really listening now and taking your symptoms seriously.
So happy to hear you are feeling more positive.
Treat yourself to a special day, it’s good to have other things to focus on and bring you peace