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

Thank you Carol, thats fantastic news for your son and you - long may his good health continue!

I'm in awe at some of these replies, people managing to work, going out and enjoying themselves despite chemo. I'm genuinely in awe.

Having no prior experience of chemo or a cancer dx I've always imagined the patient would be house bound and unable to enjoy life at all. It's heart warming to read that others can and do manage to keep a semblance of normality regardless.

I will be sure to remember the Mcmillan site too

Right now, just take care of yourself. Sleep as much as you can with the 7 month old, eat healthily and focus on stuff that gives you joy for mental resilience.

Thank you ABC, I will try my best

Baby isn't my only DC so rest is little and far between but will ask for what support I can

I didn't realise sores were indicative of lymphoma, I wish I hadn't checked now. This one on my neck is really sore and like nothing I've ever had before

How are you today OP

Anxious, but trying to keep rational. Thank you for asking boots. I appreciate the support on the thread.

Have to have more blood tests today, the third lot this month. I know my GP has requested a glandular fever screen but not sure what the other two requests are and daren't look them up

Last time I went to plebotomy the lady taking the bloods said "weren't you here the other day" looking confused. I'm hoping I get to see somebody else, it's a little embarrassing being back and forth - but it's the doctors requests so so be it.

I'm told to ring the surgery if I don't get my scan appointment through the post in the next week, and they'll check the system. I have crap post service where I live (god knows why as it's London) but half of my mail tends to go to the neighbours.

I hope you dont have too long to wait, maybe try and distract yourself with something (easier said than done of course) it's the not knowing that let's your mind go wonders I get it.

Positive thinking all the way, I'll be thinking of you!

I didn't mention this as it didn't seem relevant at the time, but I have to wear a mouth guard to bed as I grind my teeth and I have a problem with my jaw (it clicks and pops when I open and close my mouth)

I've been reading about TMJ/TMD and seen a few posts on various sites where people who have it have had swollen lymph nodes in their neck.

How wonderful it would be if all of this was something as simple as that.

Unlikely but one can hope right!

Thank you kindly boots, much appreciated x

You never know, I'd say lymphoma is pretty rare so it could be any number of things! I suffer with health anxiety though so any twinge or bump I always think its something sinister which is never actually the case! Stay positive xx

I hope you get a diagnosis and effective treatment soon, whether or not it turns out to be lymphoma. I would just say, make sure that if lymphoma is excluded, you stay "in the system" so to speak, until adequate answers are found as to what's going on. Your GP should be keen to help with that.

Thank you ladies,

Yes I'll definitely press for further investigation if lymphoma is excluded

I should have stuck to my guns and not told the friend I mentioned yesterday about the referral.

I wanted to be honest about why I was pulling out of plans and needing some time to myself so was open about the 2 week referral, what they tend to be looking for.

Low and behold "im going into hospital tomorrow myself"

There's sod all wrong, this always happens whenever anyone has a legitimate concern with their health or something is genuinely wrong, suddenly she's got something sinister and is at deaths door

She's been caught out fibbing about cancer tests in the past, making up appointments and investigations, then suddenly when rumbled "oops, no there's no cancer the doctor was wrong"

I've long since suspected there were underlying MH issues so have always stuck by her and inwardly rolled my eyes at these things, but now I myself am faced with the real prospect of having something like that I feel like letting rip. Its so upsetting to see somebody you care for, making a mockery of genuine medical concern.

@Lumpybumps1 Saw you're post and wanted to reassure you somehow that it could quite possibly be ok I say this because I had very similar symptoms to you in September this year, I found a big lymph node and a smaller one on my neck so I waited few days but one lump got bigger and you could actually see it sticking out it looked quite scary!!
I didn't google I hate google for health worries because I go into panic mode and everything is a death sentence!
The doctor was a bit worried about the bigger node and not worried at all about the smaller one. She asked me if I could afford a private scan to get it done quickly so she faxed a private hospital and I got an appointment for a ultrasound six days later.
At the scan the consultant asked me a few questions and then told me to come and sit down for a chat. Imagine how I felt I thought the worst and bluntly came out and asked if it was the c word!
Thank god he said no he said I had several big lymph nodes I didn't even know I had as well in my neck and one under the muscle I couldn't even feel.
He said it was caused by inflammation, and no further action taken no biopsy nothing.
I was so relieved so I understand all the thoughts you have in your head right now! One of the nodes is still there but has shrunk but still very there I can feel it round and size of a pea maybe but when I had scan it was treble the size.
Try not to worry and don't google it could very possibly be ok 👍

I'm actually wondering if, because she has a tendency to lie about health problems, she thinks I'm doing the same.

Judging me by her own standards.

I do know for absolute certain she's fine by the way, this is a common theme.

Hello kissme, apologies I cross posted my rant with your lovely post!

Thank you so much for that, I love reading positive outcomes be it being cleared of lymphoma or beating it. So pleased to read that you had the all clear, what a huge relief that must have been. I will be jumping for joy if I have a similar experience I truly will

A colleague of mine had (I believe) non-Hodgkin’s lymphoma several years ago. She was very unwell and at one point the prognosis wasn’t good, however she received a bone marrow transplant and is now fully recovered with a beautiful baby girl of her own. :)

That's so lovely paddington, what a wonderful gift to receive after getting the all clear. That made me smile

I don't know anything about bone marrow transplants or stem cell etc but I've seen both mentioned in a few places.

How does that work? Are relatives usually a match or do patients go onto a waiting list of some kind? It's amazing what can be done these days isn't it

My brother (25) was diagnosed with stage 3 Hodgkin's lymphoma in June, he started with night sweats, vomiting, weight loss A huge lump in his neck and his groin, it was in his spleen and pancreas, he's has intensive chemo since beginning of July, he has a PET scan half way through treatment and it suggested he was going into remission, carried on with treatment, hit some bumps in the road and ended up with sepsis and pneumonia but came through the other side and he's due to have his next PET scan next week to confirm he's in remission!
Just try and think positive, cancer really isn't a death sentence these days

Your brother rocks glitter, what a trooper he sounds and your post has added to my morale

I've had sepsis myself and that was frightening enough on its own, I can't imagine how terrified you all must have been for him seeing him go through all of that at once

Long may his good health continue x

Firstly, it is highly likely it is nothing! The 2 week wait/cancer pathway is a lifesaver for many but for the vast majority the news is good. For context, I have had 2 of the 2 ww appointments this year, dh has had 1 and all 3 scared us senseless but turned out to be nothing serious.
If (and it's a big if) you have lymphoma, then I'm here to tell you that both my best friend and brother have had and beaten it.
To echo what others have said, it's very responsive to treatment and both my df & db are now fighting fit and very well now.
Oh and in response to your other thread, please block your 'friend' Really, just ditch her and ignore! Surround yourself with those who have your best interests at heart over the coming weeks!

Thank you velo that is ever so reassuring

I'm really pleased I posted here as am feeling considerably more calm than I was last night. I'm so glad your friend and brother are back to good health and kicked cancers arse!

I have a tremendous amount of respect and admiration for people who've fought the horrible disease, and the families who support them through it every step of the way.

Hopefully it turns out to be something far less sinister, but in the event it's the worst case scenario, I have alot of reassurance that it's not as bad as I initially thought

My DH had stage 4 non hodgkins lymphoma, probably about 14 years ago now. He is sitting here right next to me and is fine!

Had chemo with rituximab and radiotherapy. The treatment lasted about 6 months and he worked throughout..

I hope its not that but it is It is very treatable...

That's so nice to hear about your husband Lou, him beating it and being well enough to work throughout that is, not the diagnosis obviously. You both must have been so relieved

I was planning on going back to work soon (youngest is still just 7 months) but I would hope that I'm still able to regardless. Hopefully I have nothing to worry about though

Hi @Lumpybumps1

I apologise in advance if you think this post is unhelpful in any way but it is posted in good faith.

I am not a medical person but your post mentions you not feeling well since the birth of your child
I know your GP has got you on a 2week pathway for Lymphoma diagnosis but in the meantime it could be worth looking at your recent traumatic birth.

You say that you haven't felt well since you gave birth 7months ago.
I read your other thread about you haemorrhaging really badly and also contracting a bacterial infection and you were very poorly.

Anyway, there is a condition called Sheehans Syndrome which affects women who have suffered haemorrhaging during childbirth.
It affects the Pituitary Gland in the brain and basically the lack of blood supply causes it to stop working or partially working(Hypopituitarism).

It causes havoc with various hormones Growth Hormone, Thyroid, ACTH(adrenaline and cortisol) and many others.
It can cause all the symptoms you have described and many more but they will not all show up at once.
No 2 patients are alike. Not all hormones will be deficient. It could be e.g.Growth Hormone and Cortisol but the sex hormones may be unaffected.

The first thing that happened was that I caught every illness going, was told after about 6months it could be glandular fever.

I had enlarged lymph nodes in my neck.
Horrendous sore throats that seemed to affect one side
Ear problems
TMJ(I have had over 50 dislocations of my jaw since this whole thing started)
lower back pain that would come out of nowhere
I was unable to stay awake for a full day
Adrenaline seemed to run non stop, I was hypervigilent and jumped at the slightest noise.
As years went by I was diagnosed with CFS/ME(severe fatigue that never went away), Anxiety(my adrenals went into overdrive) and Depression(I slept for long periods).

It would take 15years for me to be diagnosed with Hypopituitarism(mine was caused by a severe head injury).
I would not wish those 15years on my worst enemy. Sorry not trying to be dramatic.

You would need to ask your GP for a referral to a

Pituitary Specialist/Endocrinoligist for specific testing which cannot be done by your GP.
Also the chances of your GP ever having seen a patient with Sheehans is very rare so she may not have come across someone with it.

Here are a couple of links that explain the condition

www.yourhormones.info/endocrine-conditions/sheehans-syndrome/

en.wikipedia.org/wiki/Sheehan%27s_syndrome

I hope this helps