I’ve just been told I likely have MGUS but I am also being booked in to have a scan and more blood tests. Does that mean they haven’t yet ruled out cancer? What happens during a scan ? Have you had one?
Hi @Yvonne1 and welcome to the group. I can imagine your thoughts are all over the place. That initial diagnosis brings so many thoughts, fears and questions and you must feel quite overwhelmed.
This is a link talking about the different tests and scans. I hope it helps.
It’s hard to comment on why the tests are being completed. What did tour medical team say? If the tests are not for a while it might be worth giving them a call back to ask for more information. Also, remember the support line is there for you to ask any questions. Blood cancer information and support by phone and email | Blood Cancer UK
Please keep us updated. This is a great place to share and we are here to support you as and when you need us X
Hi @Yvonne1, welcome I am so glad you have found us so quickly you must be in complete shock.
@Nichola75 has responded so well.
At the moment I think the answer might be that your GP/Consultant is just being thorough so they get the right diagnosis for you.
There are lots of different scans and different blood tests, this will not help your fears, anxiety, thoughts, feelings, questions and practicalities. Perhaps this is a time for you to write everything down you want to ask at your next appointments. Sometimes it feels to me that medical people speak another language so please do keep asking for clarification until you really understand.
Do you have any support from family and friends?
I find this forum very supportive and sometimes they understand me far better than others can.
Please keep posting, we are here to support you and I look forward to hearing more about you.
Thank you so much Erica and Nicola for replying.
Yes my head is all over the place but I’ve calmed down a bit now. Thankfully I have a couple of sisters and a couple of very good friends that are all being very supportive.
The consultant said a skeletal scan and he will repeat the blood tests to see if anything has changed. It is all very new and only came to light because a Dr went the extra mile looking into my hypertension. Then I will see him again in 6 weeks . Trying not to dwell on the worst . But it’s hard. Any good coping mechanisms for the waiting? I’ve started meditating again to try and keep me thoughts from running away. But I am also of the age where I get what I now hope are hot flashes and aches and pains, so it’s hard to separate out symptoms from normal ageing.
Thank you both for reaching out, it certainly helps.
I personally feel that waiting is the hardest part and unfortunately, with blood cancer/blood conditions there seems to be an awful lot of that! My mind continuously worries and I’ve come to accept that will always be a part of it for me.
Different things seem to work for different people. I think meditation is great, alternative therapies sometimes help and just making time to look after yourself/being kind to yourself.
It’s great that the support is there personally and medically - that’s so important and not always the case for everybody. For me, this forum, where you can share with people who understand, has been a life saver. I also have regular counselling as my anxiety is up and down. Counselling isn’t for everybody either, but for me, it helps. I also call the support line when I need to. Sometimes, just a chat is all that’s needed.
Remember, it’s ok not to be ok. Use support services, don’t keep things bottled up and just take each day at a time. It’s normal for emotions to vary and it’s a bit of a rollercoaster. It’s your journey and you’ll learn what works for you.
Please keep sharing with us as we all understand and are there to support you X
Thank you all for taking the trouble to reply.
This is all very new and of course I’m wondering if every ache and pain is a bad sign. But this morning I did have very frothy urine. I think this is a sign of protein ? Should I call the Doctor, not even really sure which doctor to call? Don’t know how to get hold of the consultant. Could the GP do anything. I won’t see the consultant for another 6 weeks. Is that too late.
Thanks for reading
That’s definitely a question for a medical professional. Save worrying why don’t you give your GP a call
Hi @Yvonne1 you are doing so well and as @Nichola75 says I also think the waiting and not knowing are the worst parts, I think I hate being out of control of a situation.
A six week time between appointments is not unusual, but must seem an age to you.
My mind goes into overdrive like a washing machine in my head.
Meditation can be great, I prefer my music. Like @Nichola75 I have found counselling very useful, but that is a personal thing. I am also a Pilates Girl and that keeps my mind focused on the exercises and keeps me fitter.
All symptoms are worth checking out with a medical professional and keep a list of them + your questions, make sure you cover absolutely everything you want at appointments, it’s your time.
As you say it is easy to put things down to our age and that is why your medical professional is probably going the extra mile with tests.
Quite a few of us are on active monitoring (commonly called watch and wait) to see how blood tests change over time (never have any 2 sets of my blood test results been exactly identical).
I was diagnosed with another blood cancer 17 yrs ago and I am still here.
All your thoughts and feelings are so natural so don’t beat yourself up and try (most of us struggle with this one sometimes) to just live in the day and keep posting.
I’m going to add a link to myeloma UK download for MUGUS
There are a number of things that are done to see how your bloods are doing and the scan if it’s a CT scan will look for any damage to bones that maybe occurring
They are routine I believe
Check out the link and have a read Myeloma UK have some great downloads
Thank you all so much for replying.
I can see what a wonderfully supportive place this is. I need a bit of advice.
So I’ve received a letter with a confirmation of a follow up appointment on the 13 th of September. The consultant said I would need more blood tests and a skeletal scan before then. But I’ve heard no word of them? When or where they will be. How do I chase this? I only have the contact details of central appointments at the hospital. My GP is in a different health trust so they can’t really help. Does anyone use the NHS app ? Does that show test results etc . I also have hypertension which is why the investigations started, sticky blood was shown in a test result. Are they related?
I know no one can give medical advice on here but wondering if anyone else has both?
Grateful for any advice people can give.
Hi @Yvonne1. Good to hear from you.
Although a different diagnosis, my bloods are usually completed a couple of weeks before the appointment and appointments for these, and scans, have often been sent in the post. I was wondering you have a number for a clinical nurse specialist? If not I’d call the hospital and go through to the haematology department or ask for your consultants secretary just to put your mind at rest.
I can’t help with the questions regarding a relationship between different conditions but there might be somebody else who can share their experiences.
Are you keeping a list of all the questions you have? I find this really useful for my consultations. Is it a face to face appointment on in September? I was allowed to take my husband this time and that helps because he makes notes of information as I never take things in.
Let us know how you get on with chasing things up.
Now, most importantly, how are you feeling about things? X
Hi @Yvonne1, I cannot add to @Nichola75’s reply because I agree with every word.
I have learnt to chase and ask questions, I think it is your approach and the way that you word it is the trick.
Does your letter give any other contact details, mine sometime do, otherwise when you get through to the main hospital switchboard perhaps ask for the department that the person (consultant) that signed your letter is in and ask for their help.
Please let us know how you get on.
Usually the consultant will arrange these and the appointments come through the post
I usually have my bloods done at my appointment
I have to arrive half an hour before appointment to have bloods then my consultant reads them when I’m there
Protein readings are usually a month behind
My recent bloods I went to our cancer unit the night before and my blood results were already there on the day
Your blood results will need to be explained via your consultant rather than the NHS app as that’s what they monitor
Your skeletal scan will show any bone damage that you may have I’m not sure what else
It’s called multiple myeloma because it can cause problems with other organs for example when your bones break down at a faster rate than it can repair the calcium has to be filtered via your kidneys and they can become blocked over time
Thankfully your being kept an eye on because of MUGUS
I’m not sure about hypertension that’s a discussion for you and your consultant
Myeloma is very individual to the person and one size doesn’t fit all.
I think of it as My myeloma
I was given a clinical nurse specialist CNS at my diagnosis and a number that she was available on. I have a folder with all the numbers I need
Have you got any thing like this?
Thank you for the reply
I don’t have an official diagnosis yet.
I don’t have a nurse assigned to me.
I still don’t have an appointment for a scan and the not very sympathetic receptionist just told me there is a back log of thousands and they might have to put back my appointment to see the consultant and find out if I have cancer.
I don’t know what to do. How do I make this happen?
Surely they can’t expect me to wait endlessly. She kept saying it’s not her department so she doesn’t know how the appointments for CT scans work or how they would contact me to let me know.
She did say she would phone them and then phone me back. Is this normal is the quality of care to expect?
I don’t know what to do.
This must be an endless, anxious, scary time for you @Yvonne1.
Obviously this is all happening at just the wrong time with Covid continuing to impact hospital services and waiting lists.
It might be worth you contacting the PALS (Patient Advice and Liaison Service) at your hospital @Yvonne1 and see if they can help.
Look after yourself and please do let us know how you get on.
I’m really shocked at the way she spoke to me Just kept saying she had no idea how other departments worked and there was no point in seeing a consultant if I hadn’t had a scan. But no idea when I might get a scan where in the lists of thousands waiting I might be. I’m devastated I thought at least in this nightmare of waiting for a diagnosis I would be able to rely on the hospital. In an absolute panic that I have to make this happen myself now. But I don’t know how.
Hi @Yvonne1 you must be in an absolute panic, but perhaps PALS is worth a try, what have you got to loose.
Perhaps it might be worth seeing your GP and tell them exactly how this is all making you feel and seeing if they can help your panicky feelings, and although it is not for everyone, some form of relaxation or counselling help.
Although they might not be able to, ask for help to get you your appointment and as we say anything is worth a try.
Look after yourself you must be so exhausted.
Hi @Yvonne1. I agree with @Erica. I have found PALS really useful and I think they would be a really good start in trying to get some support with your situation.
I completely understand your anxiety around this and hope you manage to get a little closer to sorting it out.
Please let us know how you get on and take good care of yourself X