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

Hi, what a great GP you have. I've read a lot of posts where they don't go onto have further biopsies with the ultrasound, they are usually good at telling if it's worth investigating. No doubt haematologist will want a biopsy, it's the only way to tell if it's lymphoma and what kind of lymphoma it is, there are literally loads of different kinds. Have you checked under your arm and round your groin are as well for lumps. I could see easily on the ultrasound the solid black lump on the screen, I watched while they did the biopsy. The second time round, it was only a pea sized lump but they still did the biopsy and unfortunately for me the lymphoma came back. But hey I feel good at the moment. My appointments are only telephone calls, just had one and she tells me to check these areas and how I'm feeling. I havnt lost weight and don't have night sweats this time so I'm sure I'm still doing ok.she is calling me again in 3 months next time, it's not ideal but I think I will know if things get really bad like my first experience with lymphoma. I hope things go ok with the haematologist, it all takes forever to get all these tests done, be patient, not all lymphomas get treatment if it is. That's now two years since I've been on watch and wait, but I'm happy with that, but I am vigilant, I know I can call my haematologist anytime, she is super. She is the only doctor you can do that with, even during treatment if you are worried about anything, they see you immediately. Fingers crossed for you. X

Hi, thank you for your reply.

How worrying for you that it's come back but you sound a very strong positive person. 

Fingers crossed for you too. Take care x

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

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