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 Lumpybumps1, I went through a similar thing a few years ago. I kept getting virus after virus and had a large lump on my neck. I finally went to the doctor when I lost my voice. I was referred on the 2 week pathway. The doctors at the hospital were very honest and they though I might have lymphoma. I had a biopsy but unfortunately got an infection so had to have 2 further operations to drain the infection.

I was terrified that it was lymphoma and did lots of reading on the internet (I think this made it worse).

The biopsy came back negative and I just had an infected lymph node that was pumping infection into my body hence the repeated infections.

Not knowing was the scary part. Once you know either way a treatment plan will be put into place. Try not to worry, there is nothing you can do until they have done a scan/ biopsy. Wishing you all the best x

Thank you Jennie, so good to read that it wasn't lymphoma for you and that you're ok now.

I'm trying to stay positive but struggling to, my youngest is just 7 months old

Fingers crossed the appointment will come through soon and they can investigate what is going on.

Yes, try to stay positive and think about your 7 month old. Let’s hope whatever it is they have caught it early.

Hi Lumpybumps,

Really hoping for you that it’s more like Jennie, but to let you know, I was diagnosed with lymphoma last year.
I had a very intensive few months with chemo & radio treatment, but have officially been in remission since.
When I was first diagnosed, the surgeon explained that lymphoma is very often very treatable, as has been my case.
Wishing you the very best 💐

Thank you both for replying, my mind is all over the place right now so to be able to chat is priceless.

Curly I'm so sorry you had to go through that, but how brilliant that you beat it! Wishing you good health here on out. You must be so relieved x

I'm very confused, I'm cycling between "it can't be" and then "it must be"

I've had ear pain and throat pain on one side with a congested nose, telling myself to stop being so silly as I don't think those symptoms are alarming but then it's the glands that are the worry really.

I've already had glandular fever so it's unlikely to be that, and this isn't how I remember it being.

GP felt my neck and could feel several nodes, based on the length of time it has been a problem I think it's good practice to refer me urgently but my god it's terrifying.

I'm sat in the bath refreshing this thread and I've never felt so vulnerable

Oh you poor soul, I remember those days. Don’t know if it’s relevant, but I had no pain , or any odd feeling, just a swelling on one tonsil.

Thanks for your good wishes.

I haven't had the most common symptoms such as notable weight loss, extreme itching or night sweats so that's a good sign i hope.

I've been continually unwell with something or the other since I had my baby 7 months ago, now looking back I'm wondering if it has all been the same thing.

Bloods fine apart from a slightly elevated wbc, anything bacterial has been ruled out.

My cousin actually had lymphoma around 8 years ago, she was just 18 at the time, went through treatment and has been all clear, went on to have her first child at aged 21 and is still all clear today. She had multiple lumps and lost loads of weight before diagnosis.

Good luck Op I wish you loads of positive thoughts and please please try and resist google xx

DH had stage 4 lymphoma 3 years ago. Full remission after 6 miserable months of chemo (and 2 months of operations to identify the mass). Avoided radio because of mass location (right mixed up with heart valves).

Back to full time physical work about 10 months after the mass was located.

Lymphoma is often very chemo responsive...

It isn't necessarily the worst thing to have, especially Hodgkin's

My current symptoms aside the lymph nodes are a sharp ache on one side of my throat accompanying ear discomfort on the same side. The sensation ranges from "tickly" to sharp.

I have a strange taste in my mouth at the moment but that's probably the result of the nasal spray I've been using to try and unblock my nose. I'm producing slightly more mucus on the right side (the side where all the bother is) and I've had a generalised feeling of being unwell for a while now. My jaw also feels a bit tender.

Oh thank you boots and random, so so pleased to read these accounts of those who have been diagnosed being able to recover after treatment.

Too often when there is any suggestion of cancer of any sort people automatically assume it's a death sentence, by people I mean me

I do need to stop googling, it's just perpetuating my anxiety isn't it. I'm not going to search anymore, but I'm getting alot of hope from this post so thank you all so much

My nephew had stage 4 lymphoma 5 years ago, started with a lump on his neck and then loss of voice (happened within a few days). He underwent 6 months of chemo and radiotherapy and was free from the disease 10 months after diagnosis, and has remained in remission ever since.

Even if it is the worst case scenario for you, it's not a death sentence.
Sending you strength.

Thank you favourite, what a wonderful outcome for your nephew and your family.

The points you ladies raise are very reassuring, it doesn't mean a death sentence. In the event of it being lymphoma I need to keep telling myself that.

Hi, my sister, (28) was diagnosed with hodgekins lymphoma in June, following swollen nodes in her neck. She'd had a baby six months before. She is officially cancer free, and finishes her chemo in two weeks, with no need for radio.

Please don't panic, it's very treatable, and she's been fit and active throughout! X

Hi summer I'm so glad your sister is ok now too, how frightening to have been diagnosed and have such a young baby. The thought alone is making me feel sick. I hope I can summon some mental strength in the event of it being the worst case scenario.

I am an incessant worrier, I worry when there is no need, so to have a genuine cause for concern for once, it's making me spiral.

I have so much respect for people who go through something so scary with their head held high

Hi @Lumpybumps1, sorry to hear that you are going through this. I had a tonsillectomy in May for an enlarged tonsil which came back as low grade follicular Non-Hodgkin lymphoma. Whilst it is stage four (in my bone marrow) is is grade 1 so I am under watch-and-wait at the moment, no treatment required at present and possibly not for many years. I have a baby girl who was 9months when I was diagnosed.

Whilst it was an awful shock at the time, I've come to understand that whilst it is cancer, NHL is a bit of an outlier, and it helps me to think of it as a long term chronic health condition rather than cancer. I'd say it feels like being followed by a big but very slow bulldozer that I can easily outrun now and hopefully continue to do so long into the future.

Now I'm back at work and I try not to dwell on it too much and it has almost no impact on my daily life. Happy to answer any questions you have now or further down the line if needed.

Hello Aestas, my goodness you sound so brave. I really admire those of you who have been faced with lymphoma and soldiered on refusing to be kept down. Wishing you the best possible health in the face of your battle.

I'm not a particularly strong person if I'm honest, I've got PTSD and an anxiety disorder and spent my days walking about like a nervous wreck and that was before all of this

Ironically, I've always panicked about cancer and often worried myself daft about having various forms (always without genuine cause, fortunately)

Now it feels like a real possibility I almost feel as though I've wished it on myself, not that I ever intentionally would.

I'm trying to hold onto any shred of hope that this isn't that, the fact I was a heavy smoker doesn't go in my favour and I'm kicking myself for that now.

I know there are two groups of lymphoma, HL and NHL, could anybody tell me which is the most curable?

I was diagnosed with stage 4b lymphoma aged 25. My bone marrow had literally liquified with disease. I won’t say it was fun, but for me starting treatment gave me my life back, as I’d felt so shitty for so long. 9 months of chemo and radiotherapy and I was all clear. I turn 40 next year, have two gorgeous girls of my own now, and it all seems like a distant memory to be honest. So, even if it does turn to be something like lymphoma, it doesn’t mean it will be that bad. I was still partying VERY hard with my skinhead and still went into work every day.

Oh Sherlock, another one who sounds absolutely fabulous. You really are a strong bunch. I have the utmost respect for each of you and the relatives here of those who've battled and won. Absolute troopers!

I can't tell you how much these replies are boosting my morale. I left the doctors surgery in tears this evening.

I think if it was bad news, I would be able to share the sense of relief at starting treatment because I can relate to having felt shit for so long.

Every time my family check in and ask how I am it feels like I'm always reporting negatively, ie "still not well" and "not great but not terrible"

I've got a friend who always has to one-up people, if you say you're not well then suddenly they're extremely unwell, if you've got a cold they've got lung problems. (They're in perfectly good health, they have always been like this unfortunately). I'm in regular contact with this person so I'm not going to be talking about my scans and testing, I don't have the headspace for them to make it all about them as usual.

I don't have many close friends so I'm so pleased I can chat here to others who get it

I'm sitting here reflecting over the various health complaints I've had over the past 7 months and wondering whether it's all connected.

For instance, I had a terrible bout of lower back pain a couple of months ago and was walking around the supermarket bent double in clearly alot of pain. Two separate women stopped me and advised on pain relief, it was that obvious something was up.

That stopped, but it makes me wonder.

I had NHL in 2004 as a young mum. I went on to have two more children a few years later and am still going strong!

You will find the strength if you need to- but I’m hoping you don’t need to.

Oh Lumpybumps how scary for you.

I'm off to the GP on Friday as I have several swollen nodes on one side of my neck, but not other symptoms, no apparent infection. I have 3 DC, youngest is almost 13 months so I feel you.

I think the majority of these cases turn out to be nothing so here's hoping that's the case for you and me both. I know being referred urgently is terrifying but better than having to wait months on end

Well done on beating it Isadora, I'm so pleased for you and your children that you're ok and going strong

I wish with all of my being that I'm not going to have to deal with the awful thing, but I hope yes I will find a way to take it in my stride if I do.

I can't get rid of this horrid taste in my mouth no matter what I drink and eat. I had an ok day yesterday with not much going on symptom wise, I felt like I might be starting to get over whatever the problem is but today the pain in my throat and ear is back with a vengeance

Went to the doctors on the bus and was shattered on the way back, had a bath now I'm sat on the sofa feeling yuck with the throat and ear pain, weird feeling in my jaw on that side and a constant gross taste in my mouth.

I've never wanted to be diagnosed with glandular fever more than now. GP isn't ruling that out so having a specific blood test, but doesn't think it's that likely as I've had it before

Thank you Bella I'm sorry you're going through something similar, yes you raise a good point about not having to wait, so for that I'm thankful. I hope you too don't need to wait too long.

I have everything crossed for the both of us that it's all going to be ok, please do come back and let me know what your GP says - I'll be thinking of you

Another strange thing which I can't be sure is related but is definitely odd, I thought I found another lymph node under my ear last night and I was rubbing it to ascertain whether it was indeed a lymph node. I don't think it was as the "bump" has gone down today but has been replaced with a sore circular scab, I've never had one like it. No idea why it's there as I didn't scratch and draw blood.

GP is baffled about my ear too, as the opposite one is blocked with wax but the problematic one is completely clear. She doesn't understand why that is and said it's "unusual"

Two years ago, my son was diagnosed with stage 4 Hodgkin's lymphoma - his oncologist said that if you had to have any cancer, this was the one to get!. Of course we were all shocked and scared. He had to have chemotherapy every 2 weeks. Chemo on the Friday, ok Saturday, terrible Sunday to Wednesday, then back at work.Thursday. Half way through his six months chemotherapy treatment, his scan showed that the cancer had gone, Two years on, and fingers crossed still gone.

There were so many horrible times though, particularly when we didn't know exactly what was wrong. Like others he found lumps, went for tests, it was a couple of months before we knew for sure.

But it seems that they have got the chemical cocktail cracked, for this cancer at least.

Good luck to you, Lumpybumps, let us know how you get one. If you are diagnosed, you will find a wealth of experience and information on the McMillan site,