hi, my brother presented in a and e and had an emergency CT scan showing lung mass , two neck nodes this was on the 6th June. They think it’s lymphoma and have done the biopsy on the 15th. We are awaiting results. It’s just the waiting we can’t handle it’s been 10 days and no word. His symptoms are getting worse, night sweats, coughing blood, breathing. We are just finding it hard to cope and haven’t got any form of contact currently. How has any one else coped with this ? He’s 27 we are so concerned with wait times
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Sorry to read this news, I can only imagine the anxiety. When I first had consultation, I had to wait for results too. Consultant could only reassure that the test results take time to come back, there was no way of speeding up process. You should, however have received information that would put you in direct contact with support nurse, or at least some information as to what to do in the event of increasing symptoms?
I’m not a medical person, but I was told to monitor my temperature, and if it goes above 38 deg to go straight to A&E (which I had to do twice, once during chemo, then a week or so after).
Sorry I can’t offer more help than this. But I’m surprised you’ve not been told to monitor and show at A&E if in fever.
David
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@Jode91 I am so sorry to hear of the anxiety that you all must be going through as a family right now. I can only imagine how tough it must be.
In case it’s helpful at all, we have some general information around lymphoma here - https://bloodcancer.org.uk/understanding-blood-cancer/lymphoma/ and some information around some of the different tests used to diagnose blood cancers, here - https://bloodcancer.org.uk/understanding-blood-cancer/tests-diagnosis/blood-cancer-tests/
Just in case it’s of any small help at all, we have a page on looking after mind and emotions during anxious times, which you can find here - https://bloodcancer.org.uk/support-for-you/living-well/mind-emotions/
If you want to talk anything through @Jode91 or if there is anything we can do to support you, your brother or any of your family at this time or at any point going forwards, please don’t hesitate to get in touch with us on our support line. It’s free and confidential and the number is 0808 2080 888.
Take care, Alice
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Hi @Jode91, a great big welcome to our forum, it is for you just as much as your brother. Reading your post and my feelings of anxiety came whizzing back, waiting is the worst. You have details of the Blood Cancer UK support line if you need it.
Whilst we all realise that we have to wait for results perhaps if your brother feels his symptoms are getting worse he should contact someone he has had an appointment with to inform them and ask for their advice. Hang in there both of you we are all here to support you, especially when you are waiting. try and treat yourselves and please keep posting how you both are.
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Welcome to the group @Jode91. So sorry to hear about your brother. I will leave you with the advice the others gave about that to do. I remember the waiting when I was diagnosed a year ago and it is the hardest part for all of you, as you just want a diagnosis. Do keep us posted on how things progress. Will be thinking of you. Lou
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Totally get the anxious waiting. The coughing blood and difficulty breathing must be especially alarming. Especailly if he has a temp too you would be well within your rights to simply go back to A and E expressing your concern about these symptoms. It is possible that he might also have an infection of course. Does he have a specific appointment to go back for the results? The waiting time is dreadful, and I remember only too well how I felt waiting for my results at the beginning. Sometimes we do have to be a bit pushy. If nobody in the family feels able to call up and ask what is happening sometimes a friendly GP will chase the hopsital for you. But clearly you need to get re results as soon as possible. Really you should have a nurse helpline to call. For moral support you can obviously call the blood cancer UK support helpline. But if a young man is having trouble with breathing perhaps a return trip to A and E might be the most appropriate course of action. And if you prefer to go to a more specialist hopsital that is within a reasonable distance of yours you are definitely allowed to do that. So for me, for example, that meant bypassing my closest A and E and going to UCLH which is the largest blood cancer hospital service in Europe (there are other specialist hosptials in some other big cities in the UK) But to be quite honest most local hospitals should be albe to handle an urgent presentation like this, and A and E doctors talk all the time about “safety netting” which basically means that they tell you to come back if the symptoms do not get beter or get worse. Unfortunately we sometimes forget when they tell us that. So, if you are worried and especially if there is no follow up, just get him back to A and E. Remind the hosptial that there is a suspicion he may have a lymphoma which means he should be shielding. If my recent hospital admission is anything to go by they take quite a lot of care to reduce the risk of passing on any infections to us.
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Dear @Jode91 I really hope your brother gets some answers soon. I think, if it were me, I would report to A&E and tell them what is going on. We do have access to our nhs 24/7 so I think that’s your best port of call. Please tell them the history, so he doesn’t have to go through all the questions again.
Good luck.
Vivien
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Thanks for all of your replies - we have been to a+e three times since last week. My brothers symptoms are gradually worsening sometimes he panics. They just tell us there are no results yet. The go gave him some sleeping pills yesterday which are helping. It will be two weeks Monday so fingers crossed we hear by then. The weekends just seem really long at the minute as you know things just aren’t being done during those days. Fingers crossed for tomorrow. Has anyone else had this situation? I just thought it would take days not weeks.
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No @Jode91 I haven’t been through a situation like yours, I cannot imagine what it must be like, but why is it that the weekends seem so much longer than the weekdays and yes, things do seem to take weeks not days. It’s tough. Take care all of you and we are all here for you all and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk as well.
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@Jode91 I really hope you hear more this week and that your brother starts getting some answers. It is normal for results from a lymph node biopsy to take up to 2 weeks, although I can only imagine how tough this waiting is. It sounds so so hard for you and your family, and I can only imagine how difficult it must be to see your brother’s symptoms worsening.
Please do give us a call if you want to talk things through. We are all here for you.
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