Hi, my first symptoms were fatigue, itchy skin on my scalp strangely enough. I was losing weight and not being able to eat much also drenching night sweats which I had to change bed at night. . After many visits to doctors who didn’t know what was wrong with me, I finally had a lump on my neck and was sent to an ENT doc. I have an auto immune problem and I think doctors just put it down to that. It was only after biopsy in neck I was told it was lymphoma, this is the only way they can diagnose lymphoma. I guess your lymph nodes swell for lots of reasons, mine did get bigger then went down a bit but never went away till I had chemo. I think my doctor could tell it was suspicious as she told me to still go to ENT even if it went down. The doctor who did my biopsy told me it was probably a thyroid problem so in my case it’s just as well they did biopsy. If it’s still there in a few weeks I’d go back. Also even if it is lymphoma and it’s indolent, most people go on watch and wait with no treatment. 

Hi Scones,

Just reading your post, I have all the same symptoms as you & had an ultrasound on Tuesday where I was also told the problem was my thyroid. My GP had asked for a biopsy too but the doc who did the ultrasound said there was no need. Luckily my GP is brilliant & yesterday she said she's not convinced so has now referred me to Haemotology, I have an appointment on Monday.

I am scared & extremely worried but I am not going to let this go until they find out what is wrong with me as I know there is something

I hope you are doing ok? xx

Hey everyone, newbie to this thread.

I've got an ultra sound +/- biopsy this Friday and I'm feeling nervous again. I say again because when I first noticed my lumps and googled about lumps and itching it immediately went to hodgkin's lymphoma. Since then I managed to de-stress but now my appointment is 3 days away I'm worried again. 

I have had two lumps on my neck for the past 2 months, and really unbearable itching for the same amount of time. Though the itching started about 6 months ago, but I just thought it was because of the small bit of eczema I have. But then the eczema went and the itching stayed, literally all over my body, even in places that I didn't have any eczema. It gets way worse at night, my partner is constantly waking me up telling me to stop itching in my sleep. 

I went to my GP two weeks after I noticed the lumps and when they weren't gone 2 weeks later he sent for some bloods which came back indicating that I'd had glandular fever (mono) but I hadn't felt like I had at all. I always had known people with GF to feel really unwell and run down and I hadn't really felt that way. The lumps were still here a further 3 weeks later so I went back and they referred me to ENT for the ultra sound +/- Biopsy (I guess that means if they're concerned from the scan they do a biopsy but if the lumps aren't concerning they don't? Any clarity around this would be fab if anyone knows!)

Also I was wondering what to expect from the ultrasound and biopsy appointment? How much will they tell me? Will they only know, and only be able to say anything, if its definitely not cancerous?

Hope everyone is doing okay. 

Hi, when I had my biopsy, the only thing they told me was not to worry, it was probable glandular. They took three biopsies, I watched them do it as the screen was facing me. They can't tell you if it's cancer, it takes a while for the tests to be done. Mine took three weeks before I found out it was lymphoma. At least you are one stage further actually getting the biopsy, it's a worrying time and there's no point in saying don't worry because it's all you will think about. The results may be sooner, but also they can tell if it's just a reactive node and they may not do it. Will keep my fingers crossed for you. The biopsy shows them what type of lymphoma it is as there are many kinds, if it is positive, you will get a ct scan next, this tells them what stage you have. 

Hi [@scones]‍

Thanks for your reply. Hopefully they are just reactive nodes or something else non concerning and they won't need to take a biopsy. And if they do have to take a biopsy I hope the results don't take 3 weeks! That must have been horrible for you to wait so long.

Thanks for all the info, really useful. 

Hi ejjo, 

When I had my ultrasound appointment I was told nothing to worry about, just my thyroid swollen on one side so no biopsy was done. The following day I went back to my GP and she wasn't convinced as she had done blood tests for thyroid two weeks earlier which were all clear. She repeated them and yet again all clear and I now have a second lump!!

My GP then referred me to the Haemotologist, who I saw on Monday and she was BRILLIANT. She also said the lumps are nothing to do with my thyroid.

My kidney function has deteriorated in the past 2 mths, now showing I have stage 3 Kidney Disease & my white blood cell count is low. The Haemotologist said both of those along with my other symptoms are pointing to Multiple Myeloma which I had not heard of until Monday. I had a whole raft of blood tests on Tuesday & she said depending on those results the next step is likely to be a ct scan and bone marrow biopsy. At this stage it is not confirmed, she said she is hoping to rule it out. So fingers crossed.

My symptoms have worsened, the itching & fatigue is persistent and the pain in my shoulders & back has become excruciating. The last two nights I have had about 2 hrs sleep. 

All the info I'm reading tells me you only get these symptoms & kidney damage in the later stages so that's not filling me with much confidence.

I can't focus on anything else & genuinely feel like no one else gets how I'm feeling. Everyone's thought process seems to be if we don't talk about it, it's not happening.

Has anybody else been through this with Myeloma, I forgot to ask how long the blood test results would take & how I would get them and who I should contact in the meantime if my symptoms worsen?

Any help / advice / kind words would be very much appreciated xx

I'm in a very similar situation. First noticed a lump on my neck 3 1/2 months ago now. Was told to watch and wait to see if it went down, it didn't. So then had bloodtests which all came back clear. Have since had other glands come up on the same side, along with being extremely run down, no appetite and night sweats, so was referred for urgent ultrasound 8 weeks ago and I finally have an appointment on Sunday. 

I did exactly the same as you, went down the rabbit hole online, worked myself up, I have anxiety anyway, so my mind immediately went to worst case scenario. I've been doing much better mentally the last couple of weeks, and now having the appointment I am freaking out again, especially as I have to go alone. But I need to know one way or the other.

I hope your appointment goes well, please update us when you've been. 

Sorry you are going through this, I totally understand what you are going through.I don't have experience with myeloma I'm afraid, mine turned out to be a rare form of NH lymphoma. I did have a bone marrow biopsy and was really worrried about getting it, but honestly it wasn't too bad, didn't feel any pain. My biopsy took three weeks to get results. My bag was packed and we were ready to go on holiday the next day. I was panicking and phoned a few times to be told they will let the consultant know I called. The day before my flight, I got the dreaded call from the ENT consultant to say I had lymphoma and not to go on holiday. I was fast tracked after that to see my haematologist and saw her the next day, but honestly, from going to my GP and getting 3 lots of biopsies, ct scans and more appointments, also my haematologist was on holiday, it was actually 3 months before I started my treatment. It was a relief to sit on that chair getting my chemo. I had bloods done a few weeks ago and the doctor called me the next day with the results. Maybe things are moving a lot faster than usual. Fingers crossed for you, let us know how you get on. X

Hey there,

So sorry you're going through the same stress, it's really a weird time and no one really gets it. What made it worse for me is my Mum has been making such a fuss about it all, which is lovely and kind and amazing but it makes it seem way scarier that she's worrying. I just want to try not to worry til I get my results. 

I had the appointment yesterday and the whole process was really smooth, such lovely doctors and nurses which was great. The doctor did the ultrasound and confirmed it looked like just 2 lumps but said they looked abnormal so went ahead with the biopsy. He said the doctor who referred me would probably want me to come back for a CT scan just to check there are not lumps anywhere else in my upper body. And said actually we might be able to squeeze you in today instead of me having to come back another day. Which was super nice of him but also worries me a little that maybe he's quite concerned and wanted to rush a CT scan because it's something bad :/ I don't know, trying not to overthink it.

He said the results would go to the doctor that referred me within 7-10 days and she'd contact me either by phone or letter to book an appointment most likely. But he wasn't overly confident about how that part of the process would work (I guess it's different for different doctors?)

I hope you're able to feel less worried about everything. I've really been trying to stay positive and just not build myself when it could not be cancer. But then part of me is like maybe it's best to prepare for the worst scenario? I don't know, it's a confusing time.

I hope your appointment goes well, check in and update me when you've been. 

Hey, 

I'm sorry to hear that your results came up as abnormal, but so glad that you had amazing doctors and nurses getting your tests through quickly. I went for my appointment yesterday and honestly came out more confused then when I went in. They found several enlarged lymph nodes which they said were not reactive, but he also said that they don't look abnormal. Now in hindsight I should have asked what that meant, because as far as I was aware a node is either reactive or abnormal, but at the time I just wanted to get out of there as soon as possible. But they didn't do a biopsy or anything, which I think is a good thing? 

So I'm just waiting for the GP to get my results through to them and then I'm going to give them a call again to see if I can get clearer on what's going on.

But I totally get what you mean, it's such a weird limbo time, I keep telling myself not to get worked up, and then I think maybe it is best to prepare for the worst, just in case. 

Hey,

Glad it seemed to go well for you, though yeah annoyingly a bit confusing and not clear! It's all such a whirlwind when you're in there it's so easy to forget to ask questions and get clarity. Keep us updated but sounds like fingers crossed you might be all clear of the big C word (hoping so at least).

The more I stew the more I really think I've got hodgkin's, I know its so bad to worry and to think that before the result but I just have this terrible feeling. Like I feel that the doctor who did my ultrasound must have known from looking at it that it looked like cancer and I think that's why he rushed the CT scan in, because if I do have it, that would be the next test, to see/check that it hasn't spread anywhere.

Uhh I hate it though because I can't say this to my family because I don't want to worry them and also they'll just say don't stress til you know, which is true, I shouldn't, it's just hard not to. 

Update from me. I had a call from my referral doctor saying my CT showed more abnormal lymph nodes in my chest, so she wants to do a PET CT scan. I asked her what her diagnosis was but my biopsy results haven't come back yet. However she did say it's possible that I have hodgkin's, although not definite until the biopsy confirms. But I think she must be pretty convinced because PET CT scans are used to stage hodgkin's (I think, please correct me if I'm wrong) so I think that's probably going to be the verdict. I don't want to jump to conclusions yet, there's still some hope in me that the lumps will be benign.

I then had a call come through from another doctor (receptionist of another doctor) saying that I have a haemotology appointment tomorrow, but she wasn't able to say why/what it was for so I'm a bit confused about that. 

Update from me. I had a call from my referral doctor saying my CT showed more abnormal lymph nodes in my chest, so she wants to do a PET CT scan. I asked her what her diagnosis was but my biopsy results haven't come back yet. However she did say it's possible that I have hodgkin's, although not definite until the biopsy confirms. But I think she must be pretty convinced because PET CT scans are used to stage hodgkin's (I think, please correct me if I'm wrong) so I think that's probably going to be the verdict. I don't want to jump to conclusions yet, there's still some hope in me that the lumps will be benign.

I then had a call come through from another doctor (receptionist of another doctor) saying that I have a haemotology appointment tomorrow, but she wasn't able to say why/what it was for so I'm a bit confused about that. 

Hi, until the biopsy comes in, you won't know if it's lymphoma and what kind it is. I'm surprised you have to see haematologist so soon as they won't be able to do anything till the results are in. Its great they are rushing these tests through so quickly as mine took months before I saw the hematologist. The ct scan is the next port of call so to speak. I had it in my neck, side of lungs, under my arm and side of kidneys. and I wouldn't have known without the ct scan. I had no symptoms of anything wrong in those  areas.  If it's only in your neck and chest they may not do treatment and put you on watch and wait. Mine was stage 3/4 with B symptoms and they decided I needed treatment. Two years down the line, it's back in my neck and lungs and I'm on watch and wait. I had to have a bone marrow biopsy as well.  If it is lymphoma, the treatment is much better than it used to be, I'm really a wimp and I coped with it. Maybe your results will be in tomorrow and you will know very soon. I wish you all the best.

Hey,

Yeah the biopsy is the final bit I'm waiting for, at the moment. They did a CT scan on the same day as my biopsy and that's come back already showing more abnormal nodes in my chest.

At my haematology appointment the doctor said the pathologists who've been looking at my biopsy sample are pretty certain it's hodgkin's so she wanted to get me in ASAP to begin the process of taking more blood tests and scheduling other tests. Apparently there's a final definitive test they do on my biopsy sample which will confirm the diagnosis (although she said their pathologists are rarely wrong I guess there's a tiny glimmer of hope that it might not be).

I've got lung scans and another two appointments scheduled next week and I'll also get the call about the biopsy next week too.

I'm sorry to hear yours is back in your neck. How are you feeling about everything? If you don't mind me asking what was the treatment like? 

Hi, sorry to hear about what they found so far. They did another biopsy on one that was under my arm to check if it was aggressive or indolent, also a bone marrow one which turned out ok. All these tests tell them what kind of NHL it is as it helps them to decide what type of treatment is needed. It's the multidisciplinary team that decide if and when treatment is needed. Do you feel well? Are you losing weight and have night sweats? When my treatment started I was actually relieved as no more tests for the minute. The wait as over. I took my treatment one day at a time, told to drink loads of water which I did, rested when I needed to, first week after treatment I was jangling with the high steroids I was on. Second week I had no steroids  and third week I was fine again then the process starts again. It was actually ok, I coped well, I had a lot of minor problems with the drugs but the doctors and nurses were great, you could call them anytime if you were worried. My biggest thing was losing my hair, I got my wig and it looked great, I bought sleep hats for night as I hated the way I looked, vain I know, but it was my way  of coping. Also my head was cold at night. Your 6 treatments kind of take over your life for a while but it went in quickly and you soon forget about it. It did take me a while to get used to this watch and wait but you actually do get used to knowing you have cancer and not getting treatment for it. I started my treatment two years ago come July and finished it in December. My only worry now is not having regular ct scans to check if the ones in my chest are the same size and not growing, I feel ok though. Covid has changed the way appointments are done, it's only a telephone call now I get, no actually examinations every three months, but the first time I get any symptoms from the last time I will be on the phone to my haematologist who is super.  Let me know how you get on, best wishes.

Hey sorry to jump on! 
can I ask is bloods the normal way to go first when they think lymphoma is the problem?

went drs 2 weeks ago for lump in armpit, she was already sure if her self on the phone it was just a cyst but saw me an said yeah just a cyst, leave it see you later.. 

I did say I had other symptoms too keep getting hot and dripping in sweat from next to no actual activity (just walking to the toilet and I have no stairs!!) to the point of feeling faint an being sick, sleep literally all day an night, loosing weight etc. 

so managed to get myself another apt for second opinion this lady was amazing she said she was more concerned about the symtoms (thinks I might have diabetes) but then when she checked me she said there's another lump too which is for sure a node. 
she's ordered me blood tests which isn't until the 15th but she said she's going to do all tests other than hormones as she really doesnt think it's menopause. She then made me feel more worried because she then started to tell me now is the time I now HAVE to stop smoking, stop drinking and really eat healthy and make a healthy lifestyle (like does she know something I don't?!) 

sorry for blathering on I've been worried about this for weeks and only just been listened too. 

The lump in my neck was the first actual worrying sign for me. I have auto immune issues and thought the fatigue, weight loss, itching night sweats were part of those. I had been getting bloods checked because I also had chronic kidney disease but nothing showed up that would have caught doctors attention. After my GP checked my lump she referred me urgently to ENT. I think she knew it was serious. ENT referred me for a biopsy urgently after he examined me. The biopsy is the only way they can tell you it's lymphoma. My sweats were only during night where I'd wake up soaking.

Hey,

Sorry to hear about your situation, it can be quite stressful not knowing what's up and having a gp not pay too much attention!

My first test was a blood test, which my doctor requested after my lumps hadn't gone away after 4 weeks so yeah I would say it's probably the normal route. The bloods will then hopefully give them some indication of what's up.

Regardless of what the bloods show, if your lumps don't go away and your symptoms persist keep going back to the doctors. Hopefully it's not anything too serious but whatever it is the sooner you know the better so please be persistent. Sometimes it takes us as patients showing visible concern/worry before they escalate things so good to keep your finger on the pulse.

Wishing you luck and I hope it all works out well with your blood tests. 

Hey thanks for the reply! I've had the first one for at least 6 weeks now, second I didn't know about the dr found that and said it was a swollen node, and I have since now found a third one on my other arm, again nothing from drs and I'm still waiting for my blood test to be done 

Sorry to jump onto the thread. I wondered if anyone had any advice? 

I had Covid 2 weeks ago and also a previous virus right before that.

My neck has been hurting for 2.5 weeks now (like a muscle strain pain I think but has now moved to the back of my head, upper neck area). It hurts to yawn too. When I was feeling my neck I noticed a lump at the lower part of my neck, near my collarbone. It's pea sized, moves and doesn't hurt.

I also, weirdly, have a burning like rash appear on the right hand side of my neck last night. Doctor was stumped and said never seen anything like it. Not sure if this is relevant or not?

Anyhow, went to see GP about lump. They said to leave it for another 3 weeks. I'm going out of my mind with worry as I have two small children and I'm very anxious anyway. Is this the right way to go about things? I only found it because my neck hurt otherwise I'd never have checked so it could have been there ages! 

Hi how are you doing