Please tell me positive stories of lymphoma

[Lumpybumps1]

I haven't been well for months, kept picking up one thing after another. I thought my immune system was just a bit run down but now I have had multiple enlarged lymph nodes in my neck and my GP has referred me urgently under the 2 week pathway for a scan.

I'm a mother of very young children and I'm terrified that if it is lymphoma, I won't be around to look after them

Please talk to me, tell me I'm being silly, how you or somebody you know have overcome the worst case scenario.

I'm so scared

Hi @MsPepperPotts

Thank you very much for your post, that is not at all unhelpful in fact quite the opposite. It has given me pause for thought because alot if not all of what you've said resonates with me since giving birth. To list them:

Enlarged lymph nodes

Sore throat affecting mainly one side

Ear problems (which I've never had before)

TMJ (Again, new thing. My dentist has given me a tailor made bite guard to wear to sleep for this reason)

Lower back pain - this one was like a lightbulb moment when I read your post. A couple of months ago I went for a smear and quieried whether lower back pain could indicate something was the matter "inside". Doctor said unlikely and probably linked to just having had a baby. I was walking around the supermarket later that day in excruciating pain which had got significantly worse, two separate women out shopping stopped me to ask if i was ok and to recommend pain relief as it was clear I was very uncomfortable. I was hunched over the pram gripping my lower back. The only time I had felt pain like that was when I was in labour (back to back babies!)

Anxiety - I've had problems with anxiety for a few years but never as bad as it has been since having my youngest. As I was being discharged from hospital in the fortnight after the hemmorhage and sepsis I was a nervous wreck, I was crying to the midwives saying I need to speak to somebody from the mental health team as I've never felt so scared in my life. Since being home I've had my first ever real panic attacks which had such extreme physical symptoms I was convinced I were going to collapse, pleaded with OH and whoever was here to call for medical assistance. I've since been diagnosed with PTSD, but despite being treat successfully with EMDR I still have to take beta blockers for the extent of the anxiety.

Depression - oh god yes. I have had that in abundance. I've had a packet of sertraline sat in my cupboard for months but never had the courage to start it, instead choosing to try more holistic methods like a healthy diet, meditation etc.

Glandular fever queried - also yes, it has been mentioned as in the sense of "not ruling it out" and my doctor requested yet another blood test to check for that specifically. I had it in my teens so it's unlikely, but they're checking regardless.

Coincidentally, sheehans syndrome was something I came across at one point when researching my symptoms but then the 2 week cancer referal was made and I instantly spiralled and couldn't think about anything else.

I'm going to go and read those links now! I'm going to keep this in mind, and if my scan comes back ok (I'm praying it will) then I'm going to push for a specific referal to look into that condition

Oh also

Every illness going - check!

I haven't had one whole fortnight of being well since I gave birth, despite being perfectly healthy before hand.

This has really got me thinking.

Until the 2 week referral was made, I was attributing everything to having a low immune system from the sepsis attack.

This will definitely be looked into if all is ok with my scan.

My thyroid levels were ok I'm told, but of course the others haven't been checked yet so I absolutely couldnt rule sheehans out at this stage.

A glimmer of hope in the darkness perhaps!

Last year I could of wrote this post myself! I became positive that I'd got lymphoma! I was always ill and I had a swollen lymph node in my neck the wouldn't go away and seemed to be getting bigger and I would cry and google everything which is never good! It always came up saying lymphoma. I got referred to a specialist who said that it was fine and that it moves when touched so that was a positive and then referred me to have my tonsils out because I was getting tonsillitis constantly..
I now realise that I just had major health anxiety which made me obsess over every little symptom

Hi @Lumpybumps1
I am relieved you have found it helpful.
I hope the tests for lymphoma are negative

My best advice though regarding the Endocrinologists is to google
Pituitary Specialist in your area.... That's how I found mine.
Then I went to GP and asked for a referral to see this specific Endo and within 2months I had my diagnosis.

Praying all goes well and you get some answers soon

Hi OP, I had Hodgkin’s lymphoma in my 20s. If you’re going to get cancer, you want Hodgkin’s .

I had a very high ESR count when they did my bloods, plus never-ending fungal infections, exhaustion, drenching night sweats, weight loss and extreme itching in my hands and feet. Mine was fairly advanced when diagnosed (IIIb) and I made a full recovery after 8 months of chemo and been clear for years.

The other diagnosis they were considering for me was some sort of autoimmune disease. Because Hodgkins is so curable, even when advanced, it was in some ways preferable to a chronic lifelong illness, at least in my eyes. It’s the word ‘cancer’ that freaks people buy cancer is really a collection of different diseases.

An aquaintance now in the clear after non-Hodgkins diagnosed late plus relapse. They’ve had a rougher and less certain time but all still looks very hopeful.

You can also get simply horribly run down when you have wee ones, and that may well be your explanation. Repeated infections can do a number on your lymph nodes.

Easy for me to say but don’t panic, Captain Mainwaring!

I should also add that, having never had any tonsil problems in my life, I had tonsillitis 5 times in the first year of my son’s life. I woke up at night crying with the pain and in the end needed antibiotics. I also had shingles that year for the one and only time in my life. Pregnancy and looking after a young child put enormous stress on the body.

Oh and I now have intermittent vertigo after a nasty ear infection a couple of years ago. Again, never had ear problem in my life.

Basically, kids destroy your health...

Hi user, I'm sorry you went through that but well done for beating it.. my utmost respect to you!

My ESR count was fine during the last blood test I had but I'm having more, this time to rule out glandular fever and to check whether any levels have gone up since the last one. My WBC was elevated but no other alarm bells during that set of bloods. I've been meaning to go and have the new blood test but with everything going on I've neglected being proactive. I need to get onto that.

I haven't had any drenching sweats which I keep reminding myself is a good sign. I've had a tiny amount of itching but I think I was looking for it iyswim?

I had a couple of days where my throat felt slightly better but it's gotten worse again now after a period of high stress. My partner walked out and left me with two under 2 and I've gone into some sort of emotional shock and have been vomiting which is exasperating my already being ran down.

You raise a good point about children lowering the immune system. I've read that alot when I've been doing my own research. Tonsilitis 5 times in a year sounds awful! I was prone when I was younger but then had a tonsilectomy.

I've always been prone to throat problems but never for so long at any one time, my throat lymph nodes have been up for at least 8 weeks now on one side and it's quite distracting and uncomfortable. I try not to focus on it but it has become something of an obsession, every morning I check for improvement then it's like "ah, still there and still hurting" which then makes me worry more.

I should have my scan appointment by Tuesday so I'm wanting that to hurry and get it out of the way. I'm to call my GP if I don't receive anything by Tuesday.

My nose has also been bunged up continually for the period of time I've had the throat and ear problems. I was wondering about nasal polyps but I don't think they would cause my other symptoms.

Whatever this is, it's certainly hanging around with no sign of buggering off

Hope you get your scan appointment Lumpy.

I couldn't make my GP appointment yesterday. Ended up in A & E with DS (he is fine though!)

Went to the walk in centre this morning and doctor said they just felt like reactive nodes so best to have them investigated but wasn't too concerned. Unfortunately as it's walk in he couldn't order the tests but now I can just call the GP surgery and ask the GP to order them as I've already seen a doctor.

I have, however, booked a private ultrasound for next Sunday. Just for piece of mind if nothing else. Also starting a new job a week on Monday so I'm concerned about taking time off straight away for medical appointments. I know my health is more important but I don't want to start off on the wrong foot if it turns out to be nothing!

Glad your son is ok Bella, you must have been very worried what with your own concerns and then DS needing to be seen

How many lymph nodes are up are you able to tell? I thought I only had one or two but the doctor could feel more than I can, being better familiar with that stuff than me

Also how much was your private ultrasound? I'm thinking of booking one myself If I haven't heard by Monday. The waiting is driving me bonkers

I can feel 4 or 5. But there could be more.

Ultrasound is £90.

That's alot less than I thought it would be, how did you go about booking privately?

I'm in London but have only ever been under the NHS so wouldn't even know where to go or how to go about private

I'm actually going to the place I had a reassurance scan when I was pregnant! I noticed they did health scans too. It's called ultrasound-direct. They have branches across the UK so you may find one near you. I just found the scan I needed (soft tissue lumps and bumps) and booked it online

How are u Op

My dad got lymphoma 14 years ago. And he's been in remission for 6 years after beating it once already. Sending you love.

Hi OP, sorry to hear about your illness.

My husband was referred on the 2 week pathway earlier this year. For several months he'd had trouble swallowing. Tests revealed he did have a lymphoma and it was on the base of his tongue. Fortunately it was graded as 1A, so they'd caught it early and it hadn't spread. There followed three courses of chemo and he's just finished three weeks of radiotherapy. It wasn't a pleasant journey, but the treatment worked and he's now all clear. I'll keep everything crossed for you that it isn't cancer, but even if it does turn out to be, keep in mind that it can be very treatable. I hope you stay here with us so that the MN collective can keep supporting you.

Did you get your scan appointment @Lumpybumps1 ?

My DM had Hodgkins 20 years ago. Intensive chemo and radiotherapy and she's still going strong!
Your symptoms don't exactly match hers. She had large swelling on one side of her neck, night sweats, severe fatigue and a persistent cough. No sickness, sore throat or ears.
Hope things work out ok.

A friend recently had lymphoma. She had 6 months of chemo sessions and thankfully is in remission. Good luck OP

Any news? I’m in a bit of a similar situation myself and I’m worried sick. I’ve had a swollen lymph node in my armpit for about six weeks. I saw my doctor a month ago who said to wait a month and see if it goes down. It hasn’t. I also have a couple under my chin and one at the back of my neck. I’m so frightened because I’m petrified of needles,blood tests,hospitals,etc. Going out of my mind

Hi OP just come across your post. Just wondering if you are okay and got an update . Hope you are alright

Hello all, OP here.

I'm pleased to report that I was clear for lymphoma.

I have since been diagnosed with acute tempromandibular dysfunction which was the cause for my reactive lymph nodes. It's a bugger and hard to treat but in no way life threatening, and most importantly not lymphoma - thank goodness.

I forgot all about this thread until I came to the board today to look for advice for a family member and saw my thread on the first page.

Thank you all once again for the lovely kind words and support as it meant a great deal to me during what was a very frightening time.

For anybody else going through the worry and uncertainty I hope you take comfort in the thread that it's not always the worst case scenario, as scary as some symptoms are it doesn't always mean cancer. I was convinced at the time and my GP was concerned enough herself.

to those who have been diagnosed and are on the treatment journey, or facing the possibility of.

So glad you got a diagnosis and it's not what you feared. I hope you and your family have been as well as you can be in these weird times.