Hi S_J_R,

I'm sorry to hear that you're feeling anxious about the night sweats and the lumps above your collar bone and in your groin. I wanted to reply and say I completely empathise.

I'm in a similar situation playing the waiting game too, as I'm booked in to see a general surgeon on the 6th (as I had bowel surgery 6 years ago and so the GP thinks they're best placed to advise) but hoping I might get an earlier appt. I then hope to have a CT booked in as soon after that possible. It's so horrible waiting isn't it? I'm so stressed and anxious.

I also have a lump on my left collarbone, which I found mid Oct and it's still there. If anything, it feels smaller and harder than it was originally. Unfortunately, I've also had a strange popping, moving sensation deep in my left abdomen for the last 18 months but I didn't think anything of  it (stupidly didn't see the GP).

I finally saw the GP when I found the lump on my collar bone and they ran bloods and ordered an ultrasound. The bloods came back clear and so did the ultrasound but they were unable to see the tail of the pancreas. For the last month, I've had bad pain in my stomach/left side of abdomen, which is worse at night. 

I'm totally stressed with it all and, although I've tried avoiding Google, I haven't been at all successful and have ended up going down a Google rabbit hole with worst case scenarios. I totally understand how you feel! 

Helen

Hi Helen

Thank you so much for replying. Sorry to hear you're going through similar stress and wait. 

Was the ultrasound on the lump on your collarbone or abdominal ultrasound? Waiting until 6th must be difficult for you, hopefully they can get you in for a CT ASAP after that. I feel lucky in a sense that I have seen haematology so quickly after the GP referral but when you're thinking the worst, each day just feels like forever. My bloods were also fine but it still doesn't give me much reassurance. 

I keep thinking there's no way I have cancer, I'm too young, I would know if I had it, the lump is just from having my covid booster but then I also keep thinking what if and everytime I have a niggle I think maybe I do have cancer.

It's all the questions and not knowing that I'm finding difficult. I think if I did get diagnosed with cancer I could deal with it, but not knowing is just driving me insane. Google is definitely the worst place to be when your mind is in overdrive but it's so difficult to avoid it. 

Sam 

Hi

Yeah it was, they did chest, abdomen and pelvis initially without the contrast and then with the contrast and they then did my neck and then added more contrast for my neck. 

It took around 20-30 minutes. Do you have a date for your scan yet? 

Hi Sam 

bo date as yet told it will be soon I just hate the waiting , currently feeling so weak . 

Is it a consultant that has referred you? How ling have you been unwell and what are your symptoms?

I feel very tired recently, like I could just sleep a lot but that could just be the fact that I'm out of routine with it being the holidays and the stress of all of this. 

The waiting is definitely the worst part. 

Hi Sam 

enlarged lymph nodes in neck and groin , drenching night sweats , itchy legs , losing weight , extremely tired all the time and they did bloods which were all abnormal . 

I hope you get some answers soon. I'm assuming you will have been referred under the 2 week wait?

My bloods were all normal which the GP was reassured with but haematology said that lymphoma won't necessarily show on your bloods. It's all very stressful and confusing. 

Yeah under 2 week referral however with Xmas and Covid seems to be delaying it , yeah my gp suspects lymphoma as you say it's just very stressful 

Hi Helen 

Just wondering how things went with the appointment today? I hope your insurance covered BUPA seeing you and you're not back to getting a referral.

Sam 

Hi Sam,

No such luck on the General Surgeon appt. which had to be cancelled. Instead, I had a conversation with my GP today, who has changed the referral and I've booked to see a different consultant through BUPA but not until the 19th! I feel better insofar as things are moving on and I know that I'm fortunate as a wait to see a consultant through the NHS could be quite lengthy. I asked about the CA19-9 tests and the GP said that they don't routinely do these and it is something that I shoudl speak to the consultant about doing. I'm ok with this. Maybe because today has been a bit of a better day pain wise...let's see how I feel as I wait for my appointment!

Hope you are ok and that you ultrasound and biopsy go ok tomorrow. They may give you some indicationwhat they think...

Helen

That's a shame Helen and I know the wait and not knowing is the worst but at least it's not too long to wait and you have a date already. Hopefully the consultant will do the blood test for you. 

I've been feeling really anxious about tomorrow but I've just looked at the lump and it has shrunk quite a bit today! Very surprised but I'm expecting that tomorrow they're going to say it is fine and it's not even big enough to biopsy. 

Just wanted to update. I had my ultrasound today they didn't do the biopsy. He said it just looks like a normal lymph node, it's small and nothing to worry about. They didn't scan the ones in my groin. 

I did kind of expect this with it suddenly shrinking. At the consultant Tuesday but I'm expecting they will just say its nothing of concern. 

Sam

Just wanted to update. I had my ultrasound today they didn't do the biopsy. He said it just looks like a normal lymph node, it's small and nothing to worry about. They didn't scan the ones in my groin. 

I did kind of expect this with it suddenly shrinking. At the consultant Tuesday but I'm expecting they will just say its nothing of concern. 

Sam

Hi 

Just thought I would give another update after my haematology appointment. They said no lymph nodes were seen on the CT and they would have been if I had lymphoma, it's also reassuring that my swollen lymph node is shrinking. They did say that my uterus looks 'funny' and they are doing an urgent referral to gynae for an internal scan. 

[@Micky86]‍ ‍ ‍ [@SunshineH]‍ how are you both doing?

Sam

Hi Sam,

That's really good news about the CT scan not picking up any lymph nodes. So, you can completely put lymphoma out of your head. How frustrating that it has picked up something else, although I suspect with with accuracy of CT that it'll discover something with the majority of people. Hopefully the 'funny' uterus turns out to be nothing but it's annoying that you're now waiting for another test.

I'm just playing the waiting game and trying to keep my spirits up but it's hard at times. Being back at work is a good distraction however I am in pain pretty much everyday now so it feels like it is getting worse. Thanks for thinking of me. 
 

Helen