I’m new to this forum, and it’s my first post, so firstly - nice to meet you! My name is Eli, and I’m a soon-to-be-22 year old student.
Onto the less jovial matters, I guess. I’ve just been referred to a local oncology unit/department, and safe to say I’m pretty darn anxious.
The referral comes after a GP spotted that my blood tests (which I get done at least once a month) have showed consistently low WBC and Neutrophils for quite some time now. They phoned me up to talk about possible symptoms I’ve had - night sweats, intense fatigue, joint pain and so on - and then made the referral. My first appointment is in early January, and I know enough about blood cancer symptoms to know that mine align rather closely and it’s possibly what my GP was thinking of.
Don’t worry, I’m not going to ask for anyone here to give me a diagnosis! I know the tricky thing with symptoms is that they’re pretty generic, and possibly (and probably) caused by other issues. The referral to oncology is still very frightening, though, and I was wondering if anyone might be able to say what I might expect from a first appointment? Will I have any tests done whilst there? Is it likely that I’ll get a diagnosis, one way or the other, at a first appointment?
I realise that every case, every patient and every journey is different, and nobody can tell me 100% what’s going to happen, but some idea of what tends to happen would greatly help ease my anxiety!
Thank you all for reading, and I hope everybody is having a lovely festive season despite the circumstances.
Hi @plutoeli and welcome to the group. I’m glad you’ve posted. I can hear the anxiousness in your post and that’s completely understandable. It makes it harder still that your referral is during these already challenging times. So, at least get we can offer some support! I’m trying to remember back to my first appointment 4 years ago. I’m sure they took a full medical history and talked through the results they had already and next steps. Like you said, each persons case is individual.
I can see you said you have blood tests once a month. Is this because of your symptoms or for a different medical condition?
I would strongly recommend giving the Blood Cancer Support line a call as well. They will be able to offer guidance and provide you with more information. Make sure you write down all of your questions for January. I know it will be hard waiting but if you can do some things beforehand it might help. Waiting is horrible so please keep posting so we can support you. Do you have a good support network? Please take care
I can remember my referral very well in 2014.
I had low blood counts and low neutrophils.
I was also getting frequent sinus infections.
My GP was incompetent so I spent all my savings on an ENT consultant then a haematologist, both on a private basis
If blood cancer is suspected you would have blood tests and a bone marrow biopsy to confirm this.
You shouldn’t automatically think the worst though,
your symptoms could be due to something else entirely.
Understandingly you are worried, but your fears could be groundless, your doctor is playing safe and just ensuring you get a proper diagnosis.
Best wishes and good luck
Hi @plutoeli, Eli, a great big welcome to our forum, you seem very medically knowledgably and also know something about blood cancer. You also say that you are on monthly blood tests, can I ask how/why?
You must be pretty darn anxious and frightened to say the least and probably feeling very isolated, I know I was. You are also adding Covid scary times into your mix.
I was actually diagnosed in 2003 on the 16 Dec so I remember feeling in a isolated, surreal bubble with people celebrating around me. ( I can hear you saying that you were only about 5yrs old then !!!)
There is a lot of information on the Blood Cancer UK website and as @Nichola75 says they have a wonderful support line to have a chat with.
The waiting for appointments and results are the worst. We on this forum are here to support you as @Nichola75 says and we will especially be supporting each other over the holiday period and beyond.
As for your first appointment, again every appointment is different and also hospital facilities, but what I have learnt to do is to write down my fears, questions, thoughts, feelings, practicalities, symptoms, other medical conditions etc. beforehand as when I am anxious my mind can go blank and I forget to ask things ( I still get those feelings today). I also need to write down answers, the checking my understandings and to ask those follow up questions. It can help me to have someone with me to do that writing and generally support me. I find it difficult to ask and receive help, but it’s worth it.
Also don’t feel you have to make instant decisions, take your time.
You now have a new support family here, do you have any support around you?
Please keep posting and I look forward to hearing more from you.
Hi @Nichola75 - thank you for your welcome, it’s very kind of you!
Yes, it certainly all comes at a rather stressful time! Though I am beyond grateful for my GPs precautionary action, and count myself really lucky I was offered an appointment so soon in light of the pandemic!
I have quite the range of pre-existing medical issues, hence the regular blood tests, and they typically consist of a full blood count plus measuring hormone levels. All of the different departments responsible for my other health care needs have come back and said my WBC and Neutrophils are nothing to do with them, but it seems everyone thought somebody else was monitoring the situation which is why it wasn’t picked up until now! Totally understandable, of course.
I’ve been a bit anxious about accessing resources like support lines as I don’t have a diagnosis yet - and may not end up having one at all! - but I think as I get closer to the appointment, I will!
Thank you for all of your advice and kind words - I’m going to start writing down any questions or worries I have now, even though it’s a month before my appointment, just to make sure I feel as prepared as I can! I’m lucky that I have some wonderful friends, and my university student support team is top-notch, so I have a lot of support.
Thank you once again for all your help, it means a lot!
Gosh, I’m so sorry to hear about all the trouble and lack of support you faced - I can’t imagine how frustrating and scary that must have been.
Yes, at the moment I’m trying to operate under the assumption it’s completely precautionary as my symptoms are pretty generic, and so it’s probably just a case of my GP wanting to double check everything is okay.
Thank you ever so much for your reply, I really appreciate it!
Hi @Erica ,
Thank you ever so much for your welcome, I really appreciate it!
Yes, I have quite a few other health issues, and so have regular blood tests and ECGs to check my FBC and hormone levels! Understandably, with so many different health care professionals and teams involved, the issues surrounding my WBC and neutrophils slipped through the cracks, so I’m really lucky that my GP spotted and flagged it up!
It’s certainly an anxious time, especially given the current circumstances, though I’m counting myself really lucky that I was offered an appointment so soon. Gosh, that must have been such a difficult and alienating experience.
I certainly relate to you with having my mind go blank! I’ve learnt that writing down things is the best course of action for me, as although I’ll feel prepared before going in, as soon as I sit down my mind is totally empty and I’m at a loss for words! I hadn’t thought of writing down things such as practicalities and my other medical conditions, though, so thank you! I’ll make sure to do a comprehensive list - I suppose it’s much better to go in with more questions than needed, rather than leave and suddenly remember you didn’t find out something really important.
I’m very lucky to have a group of close, amazing friends, and whilst most aren’t physically close by (such is the life of a student!), their support means the world to me. I also do have my parents, though both have their own health ailments and my Dad has Parkinson’s Disease, so the last thing I want to do is stress them out any further, bless them.
Thank you so much for your kindness, support and advice - I already feel calmer about the whole prospect, and I really appreciate your time and generosity!
Hi @plutoeli, this might be useful as well to give you some info on tests that might be completed.[Blood cancer tests | Blood Cancer UK (https://bloodcancer.org.uk/understanding-blood-cancer/tests-diagnosis/)
Thank you so much! That’s a great help - I’m very used to blood tests, but beyond that wasn’t sure what I could possibly expect. Thank you ever so much, I really appreciate it!
You’re welcome. Take care
Gosh - you have a lot going on. Totally understandable yes, but frustrating that it was picked up late. However, I’m glad they are on top off it now! Sounds like you have lots of good people around you which is so important in your journey!
Welcome to the group. Sorry you are going through this but, you are not alone. We are here to support you, and we will do this to the best of our ability and personal knowledge.
Please, please do wait until you’ve had your appointment and then you will know what you are dealing with.
It’s easy to assume the worst and quite often that’s not the case.
Please phone our support line and get some help and advice from them. Meanwhile, have as good a Christmas as you can, and, please reply whenever you feel the need. Sometimes waiting and worrying is actually than what your results will be.
Sending best wishes
Thank you for the welcome, and your support - it really is appreciated!
Yes, I’m thus far trying to operate under the assumption that everything is fine, and my GP is just being precautious - of course, that’s easier said than done, but I’ll be in a much better decision to know my next steps once I’ve actually had the appointment in a fortnight!
Thank you ever so much, and I wish you a wonderful festive season!
Try and have a peaceful Christmas, all the best with your results and please let us know how you are following your appointment. Vivien xxx
Hi @plutoeli. How have you been?
I’ve been okay, thank you! Physically I feel like things have gotten more pronounced, but thanks to everyone’s kind words of support and advice, mentally and emotionally I feel a lot calmer and confident in advance of my appointment on the 6th.
I’ve yet to get round to writing down a full list of symptoms, perhaps in part to some remaining anxiety, but on the whole I’m feeling as okay as to be expected about it all! I hope you’re doing well!
Hi @plutoeli. It’s really good to hear from you and I’m glad that you feel a little calmer. The anxiety of waiting can be so debilitating can’t it, so I’m glad using the forum and sharing with us all has helped. Sometimes, I don’t know where I’d be without it! I hope the festive period was ok for you? You’ve still got time to write down your symptoms and I’m sure your’ll do that when you are ready. I’ll be thinking about you on the 6th. I’m the meantime, you know where we are if you need anything and the support line if you have any last minute questions before your appointment. Please let us know how you get on and take care of yourself
Hi @plutoeli, I am glad you feel calmer and more confident. You have got time to write your list of symptoms, questions etc.
It will be natural to feel slightly more anxious as the 6th approaches and on the day, but I find accepting that helps me manage the feelings.
We are all here to support you and you have details of the support line, we are her for you.
Any hints to help others with their anxiety?
Well, I had my first appointment!
It was changed to a phone appointment, which is totally understandable given the current circumstances! The consultant was very nice and reassuring, and we discussed my blood test results and symptoms.
He’s asked that I get more in depth blood tests looking specifically at my immune system and vitamin levels, but if the results show my wbc and neurophils are still as low as last time I’ll have to get a bone marrow biopsy done, as well as regular monitoring and appointments going forward.
So, no real news as of yet (and I totally didn’t expect any, either!), but I feel a lot calmer about everything and am really pleased that my consultant seems not only super on the ball in terms of sorting out tests and investigating everything, but was also very calm, understanding and reassuring.
Anyway, I hope everyone has been having as good a start to 2021 as possible, given the circumstances! Best wishes, and socially distanced hugs to you all!
Hi @plutoeli, doesn’t your consultant sound wonderful and having confidence in, liking his persona, feeling he is really on the ball and feeling at ease with him make all the difference. If I feel at ease with someone I will be able to say what I really need and want to.
I think your practical approach is so sensible in Covid times.
I think you have had a lot of news, perhaps not conclusive answers yet.
Please let us know how you are getting on at each stage and we are supporting each other through shielding and beyond on this forum.
You are doing brilliantly as I think the not knowing is the worst, take care and stay safe.