I don’t know what I’m set to gain from typing all of this maybe just abit of a vent and if anyone replies then it will be a bonus
Basically ive been dealing with some ongoing symptoms for a good 6 months. Constant itching especially on my arms top of my legs and behind my neck, some petitche spots on my chest,persistent cough with no real reason, deep joint pain in my hip and thigh, extreme fatigue, pain when drinking alcohol l, breathlessness and pain in my chest. I also found a small pea sized lump in my neck near my collar bone and then a lump in my right armpit. I went to my GP when I found the lumps in early March as my family have a history of breast cancer. Luckily she referred me and I had my appointment at the breast clinic last week as I had also felt tightness in my right breast (where the lump is in my armpit) and shooting pains.
I had an ultrasound where I was told my breast looked fine however the radiologist was concerned about the enlarged lymph node in my armpit and I also had 5 other lymph nodes up in the same armpit. She did a biopsy there and then in the larger lymph node. I’m not sure how big it is I wish know I had asked more questions but at the time I was so shocked that the biopsy was happening I don’t think I really took in what was going on. I know all these symptoms can be a sign of lymphoma but I’m trying to tell myself it could be something less sinister
I’ve now got to wait 2-3 weeks for results which I know is protocol but it is so excruciating just waiting. I’m trying to distract myself and not Google. As I say I’m not sure what I’m doing here other than just wanting to speak to someone who has been through something similar. If you have got this far thank you so much for reading
Hello there @Mols93, welcome to the forum at this worrying time. Hopefully joining will come to feel like great self-care as you’ve come to just the right place to share concerns about blood cancer.
I’m sorry to read of those symptoms that took you to your doctor, but well done for getting checked out. That can’t have been easy, especially with the surprise biopsy! You’re now in the anxiety-provoking waiting stage in between tests and results and my advice would be to find some healthy distractions. What do you like to do to occupy yourself? Can you share these concerns with a loved one? Like you say, Dr Google is not worth it right now as it’ll only generalise. Keeping active helped me, and watching lots of old favourite films and TV.
Although I’m not a doctor, I’ve read around the forum from @BloodCancerUK_Nurses that enlarged lymph nodes are not necessarily due to blood cancer, and in fact can often simply be a sign of infection from something else. I’d say it’s great that you’ve had a biopsy taken to be sure.
Would it help to speak instead with the lovely specialist nurses at Blood Cancer UK? Their number is 0808 2080 888. Do please let us know how it goes, and be kind to yourself in the interim @Mols93.
Welcome to the forum - and thank you for taking time to reach out.
I’m sorry to learn of your circumstance - my heart goes out to you.
I can see @Duncan has already left a very kind response and i echo his words.
Whilst i don’t have the symptoms you mention, i am a Chronic lymphocytic leukaemia ('CLL') patient and on active monitoring - and having just had bloods taken three weeks ago yesterday - i have another nine weeks or so to wait for the results to come back (although i check for the results every day) so, if i may say, i feel i can relate a little to your feelings with regards to waiting for results to come back.
I hope everything goes well, do feel free to let us know how you get one
Hi @Mols93, I’m glad you found your way here, even if you weren’t sure why - sometimes just ‘putting it out there’ is reason enough, I think?
The waiting is difficult, and it sounds like you’ve had a lot to deal with already just getting to this point. I hope Duncan and Mike’s replies have helped a little, and please do keep posting as things progress - there are lots of people here who’ve been through this kind of limbo and will want to hear how you’re getting on.
We put this list together from our mind and emotions pages - it’s written for people with blood cancer, but I think the advice holds for anyone navigating uncertainty, to be honest.
And, as lovely Duncan has mentioned, if you ever want to talk it through with someone from our team, the Support Line is there for you: 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Thank you all so much for your replies it’s greatly appreciated
Sorry for my delayed response I have been trying to stay off my phone while I wait for these results because I just need better distractions
My symptoms have got slowly worse over the past two weeks. My joint pain in my leg has become a lot more frequent, my fatigue in the afternoons is sky high, my itchy skin has got to a point I want to rip my skin off it feels like my veins are itchy. And I also dealt with two nights of night sweats this past week
I still have no results it was two weeks on Wednesday since my biopsy and with the Easter bank holiday I fear it could be abit longer still. Just thought I’d update this post on how it’s going at the moment
I am so sorry the wait is dragging on like this; two weeks feels like an absolute lifetime. I have been through the waiting with a number of biopsies and currently I am waiting on a scan outcome so I know how you are feeling all too well.
I find staying away from my phone helps me avoid the “Google rabbit hole” it is rarely a friend during the wait for biopsy results or constantly checking the NHS app.
I also try to keep myself occupied-maybe find a project that keeps your hands busy and your brain occupied? Whether it’s a bit of gardening, starting a new book, or even something simple like a jigsaw or a crossword—anything to break up the day. It doesn’t stop the symptoms, but it can help the hours pass a bit more quickly while you’re in this limbo.
With the Easter bank holiday, things often do take a bit longer, but that doesn’t make your itching or the fatigue any easier to deal with.
Please do reach out to the Blood Cancer UK specialist nurses. They can’t speed up the lab, but they are brilliant at suggesting ways to manage and those specific symptoms while you wait for your consultant to call.
Hang in there. You’ve done the hard part by getting the biopsy done, and once the results are in, you’ll finally have a plan of action. We’re all thinking of you.
Hi @Mols93 and thank you for coming back to update us - please don’t apologise for the delay. Stepping away when you need to is always sensible!
I’m sorry the symptoms have been getting worse while you’ve been waiting. Give that this is the case, we would say it’s probably worth ringing your GP - they can’t speed up the results, but they may be able to help with some of what you’re dealing with while you wait, as you shouldn’t just have to ‘grin and bear it’.
Take care, and please do feel able to do as lovely @Jules recommended about calling the Support Line.
Hello there @Mols93, just wondering how you’re doing a few days on? I realised I hadn’t suggested a great tip that others around the forum have suggested when experiencing itchy skin. While I would not hazard a guess what might be causing the itching, have you tried taking cooler showers and drying your skin gently after? Many have said this can stop the itching getting so bad. Personally I find keeping hydrated to begin with helps, soft towelling after showering, and using moisturising/hydrating unscented/baby shower gel etc.
I’d second the great tips about finding distractions in between tests and results, although perhaps if your mind is racing you might want to keep busy physically to wear yourself out to help with sleep—this helps me when anxiety starts interfering, and sleep is so important, especially when stressed. If thinking about the test results is taking up too much of your time then do let your GP know, and you do not need to be in pain either. Perhaps your doctor can advise on ways to minimise that pain.
And don’t forget the lovely specialist Blood Cancer UK nurses I’m sure would offer great advice too, including medical advice that we forum members can’t offer. Their free number as mentioned is 0808 2080 888.
Thinking of you at this difficult time @Mols93, I hope you get some results soon.
Hi everyone thank you again for your lovely replies it is much appreciated
I actually have some good news. My lymph node cell biopsy came back as clear today which obviously I am so relieved by. However I’ve now got to go in tomorrow for some bloods to be taken as my symptoms I’m dealing with are quite frequent and concerning.
The itchiness honestly feels like I need to take my veins out and give them a good scratch especially on my wrists. I’m still dealing with the leg pain in my thigh and hip, the tiredness even though I’m knocked out at night for 8 hours I wake up exhausted and I’m ready to sleep again by 2pm. I’m feeling the cold so easy and struggle to warm up even with a hot water bottle. And now my left hand has started doing tingling sensations randomly.
Would a lymph node cell biopsy show any form of blood cancer or would it have just been if there was a spreads and lymphoma?
So I’m pleased the lymph node is clear but obviously we aren’t out of the woods just yet
Hello there @Mols93, that is such great news about the lymph node biopsy! Make sure to celebrate that in your own way, these signs of good news are worth holding onto.
I am really sorry to read just how bad the itching is though. If I was experiencing this I’d definitely ask my specialist for support, it sounds horrible. Although I’m not a doctor, I know of other forum members who, when experiencing itching like you, have been tested for their ferritin levels and have gone on to have iron infusions which can help decrease the itching. Might it be worth asking your specialists?
From my understanding, blood tests are really incredible at picking up blood disorders, infections, all sorts that may or may not be as scary as blood cancer. I had a lymph node infection a few years ago which was thankfully not a big deal but indicated my immunity was likely weakened.
Do try to hold onto hope that this testing will find something manageable. The waiting can make us feel so raw and vulnerable so please look after yourself now. Do you have loved ones to share all this with, it can really help to talk it through? The Blood Cancer UK specialist nurses are right there at the end of the phone if you’d like to talk the medical side of stuff over with them, their free number is 0808 2080 888.
Keep us posted please about how you get on @Mols93.
