Hi, I was given biopsy results over the phone last Thursday by my rheumatologist- SLL/CLL and have just been left. I managed to speak to hematologist secretary today who said I have an appointment for 2nd May. So that is a month of no explanations or chance to ask questions. Feeling very frustrated
I am so sorry to hear that this is how your results were given to you. Waiting for a month after that to get an appointment is not really acceptable. This is a long time to wait to ask pertinent questions. It is always a good idea to draw up a list of questions before every appointment. This way you don't forget any important questions. It is also a good idea to take someone with you to all of your appointments if you can.
Try to distract yourself from the wait by keeping busy and do your best to stay away from Google.
Please let us know how you get on on 2nd May. We are always here for you.
I'm sorry to hear that you are still worrying about your lymph nodes. Did your doctor not inform you that they often swell up when you have an infection? Some will go down and others will remain up for quite a while. I hope that your antibiotics have the desired effect on your throat and, that the swelling in your lymph nodes will go down accordingly.
If they are still up when you finish your antibiotics, go back to your GP again for a referral re further investigation.
hi just a update doc has just rang. Its not lymphoma or cancer if throat or skin. He said there are abmormal cells but they dont know what they are so he is refering me to the soft tissue unit(sarcona). The core biopsy was a good sample so said shouldnt need anymore taking. So feel better i know still not got a answer but feeling good and staying positive.
I'm glad that you have heard from the doc and that you can rule out cancer or lymphoma. It is good to hear that you dont need any more biopsies.
Did your consultant say how long you are likely to wait for an appointment at the soft tissue unit? I hope that you don't have to long to wait andthat they'll be able to finally give you a diagnosis. Don't forget to keep us updated when you find out. We are always here for you.
thank you so much i have found this group so helpful and supportive. He said if havent heard by next week get in touch with him and he will chase it. It is a weight of my mind just want to know what next.
Will keep you updated once i hear or know anymire thank yoh once again jolamine.
My wedding shoes came today to. Silver clouds etc
Next week sounds reassuring. I am sure that you just want to get on with it and, see exactly what you are ddealing with.
Wow exciting times, glad you've got your wedding shoes and hope that they're nice and comfy. When is the wedding planned for?
Look forward to getting your update.
yeah just want to get sorted before wedding in august. Had a fall yesterday landed on my left side which is side lump is and shoulder is sore. Slipped on wooden floor. Big dope me.
Will keep you updated and you really dont understand how much your support and words/advice have helped me these last few weeks. Xx thank you again xxx
I know that there is never a good time to go through something like this, but it's certainly not what any one of us would expect when planning their wedding.
It's so easy to slip on a wooden floor. Sorry to hear that you are sore on the same side as your lump. Did you hit your breast too, or was it more your shoulder?
I am glad to hear that you have found my support, words/advice helpful during the past few weeks. Remember that we are still here for you.
my lump is in my neck which i twisted when i fell but my neck and shoulder are sore more so now coz of fall. I’m abit stiff to. But i’ll be ok just takkng pain killers and been putting hot water bottle on it. Clumsey me. Xxx
I hope it’s okay to post here. I just came across this thread and found it reassuring (if that’s the right word) to see that I’m not alone going through all of these tests and emotions. I am a young mum of 2 (5 and 2) and am so scared regarding my symptoms, especially as they have been going on for so long and now I also have a lump on the left side of my neck under my ear. Does anyone have a number of other symptoms other than the lump? I have had chest & back pain since Oct, I’ve had bowel issues, have been spitting blood, have numbness & tingling on the left side of my face & in my left arm and leg and pain along my shins as well as tinnitus, and now this lump has appeared (again on the left) I’m going crazy with worry. My symptoms are so far ranging it’s been hard to get a diagnosis. I had a neck Mri a few weeks ago which was clear but now I’m petrified because of the lymph node. I hope everyone has positive news regarding their upcoming tests and results, such a stressful time xxxx
Hi Young Mum,
I probably won’t be much help (as I am super anxious about it all too) but I didn’t want to scroll past and not reply! Those symptoms sound like a nightmare for you, and I have the same with regards to chest and back pain (the back pain being directly behind the area of my chest) but no spitting blood. It may be wise to get that checked out as there can be various reasons for that happening
I’m not experienced medically but hopefully a clear MRI so recently would have picked up anything untoward and I hope that’s been able to calm your anxieties a little!! Lymph nodes can swell for so many different reasons, most people I’ve read about are told to watch and wait for a couple of weeks to see if it goes back down as it may be some sort of infection that your body is reacting to?
Theres never ever any harm in going back to the docs as it is a new symptom and hopefully they can put your mind at ease by examining your neck! And an onward referral if that is needed.
Waiting for an outcome is the hardest part. There’s nothing worse than the fear of the unknown but this thread I find is really helpful as most stories have had positive outcomes! However, lumps and bumps are always worrying and it’s impossible not to let your mind go 100 miles an hour with what ifs!
Let us know how you get on if you follow up with the doctors re: neck lump!
Best wishes and there are lots of people to support you (probably with more useful advice than me) xxx
Thanks so much for your reply. Yes the mri is reassuring and I was beginning to feel like maybe all these symptoms could be from a crazy virus or something but now I have the lump and I’m still getting leg and arm pain, I’m just a bag of nerves. They thought the blood was from the ulcer they found when they scooped me, but no sign of it on mri and now they can’t find it again! Going away the weekend so the kids will hopefully take my mind off things then going to see the ENT consultant next Friday so hopefully will be sent for more tests. Hope all is okay with you, do you have any tests coming up? Xxx
I totally understand! No matter what tests say, if symptoms persist then so does the anxiety around them... I am the exact same!
Did they say what they thought it was since it wasn’t from the ulcer?! It’s horrible when you leave without answers.
That’s good that you have an appointment with ENT, hopefully they’ll be able to give you more information!
i have an ultrasound next Wednesday. I was referred by my GP but I have decided to go privately as I am so anxious and the waiting list I was on for NHS ultrasound was months long (I think I would’ve driven myself nuts waiting) and I’m lucky that my family have helped out with payment! I’ve got a swelling at my thyroid that’s been there for weeks, along with bowel problems, fatigue, chest pain and breathlessness. All bloods have been normal and so doc thought next step would be the ultrasound as she couldn’t be sure what was going on with my neck. Of course I’ve taken myself on to google... big mistake lol.
Hope you have a lovely weekend!! You deserve it, let your mind and body relax and get some rest (if you can with little kiddies)! Xxx