I received my scan report by email today as my GP surgery is not taking calls. ( I requested this as I had the scan before Xmas & have been trying for over a week for results) ) On my report it says altered bone marrow signal in cervical vertebral bodies. Then, Myeloma screen advised. I am so worried & can’t speak with a GP due to staff shortages. No further tests have been arranged by GP.
Welcome @Jude13 and I am so glad that you have posted, it must be very scary and frustrating not being able to talk to someone at your GP surgery.
The waiting and not knowing are the worst times, I think.
Your feelings of worry and frustration are so natural.
I believe a lot of surgeries have gone over to this new set up.
Everything is on line these days it seems.
The phone system, during opening hours, at our surgery does however say to stay on the line if it is an emergency or you haven’t got access to a computer. I have done that before now.
On line I can request a GP or nurse appointment, although I have not used that facility.
How do you know that no further tests have been arranged by GP?
Have you asked for your practice manager to deal and respond?
We are all here for you and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Be kind to yourself.
Dear @Jude13, thank you so much for posting on the Forum and I am so sorry you have struggled to get through to your GP for some clarity and direction. I would firstly say that ‘altered bone bone marrow signal’ can be seen in a number of conditions, including underlying joint disease such as degenerative arthritis or rheumatoid arthritis, avascular necrosis, infection and some malignant conditions so it is very important to get further tests to be sure of what your condition is. I am presuming you had the test due to pain? I would as @Erica suggests, contact the Practice Manager to request an appointment with either the Nurse Practitioner or GP to ensure a plan can be made and your mind put at rest. You can mention to the Practice Manager that the term ‘Myeloma’ has been used which is a type of cancer so therefore there is a need for investigation as soon as is possible. I really hope you get some response to this and if you do need to talk our Support Services Team are here Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
Thank you so much for posting. I emailed one of the really good receptionists at my practice this morning & she arranged a GP to ring me this afternoon. I asked if he could arrange the tests. I have collected forms for both blood & urine test. I have managed to book an appointment for these for tomorrow.
The scan results had been sitting there since Jan 4th so unless I had emailed I still would be unaware of the findings.
I don’t suppose I will the results fromthe tests for at least a week., but things are now moving.
Oh @Jude13 that is absolutely brilliant news that things are now moving, please upo date us as and when.
I hope you celebrate tonight, look after yourself
Thank you so much for posting. I have a urine test form which I think says a Bruce Jones protein. The blood test form says Myeloma screen & Plasma electiphosis? Can’t really read the Dr’s writing! Ticked on form are the basic renal, bone & FBC. So worried & only wish I could have the results instantly.
My cardiologist wants my yearly cholestrol test. I received this in the post today but he needs me to fast so will that affect these orher tests as my Dr has put on the Myeloma forms I am not fasting.
Hope you’re ok @Jude13 I’m sorry you’re going through this worrying time! As Erica and Gemma have said we’re only a phone call or an email away on the support line
Thank you so much for posting. My stomach has not stopped churning! I have been awake last all night. I don’t know if I can fast to get my cardiolgist test done the same time or if it will mess the Myeloma result. I should have asked the Dr when he rang but couldn’t even think what day it was!
Hi Jude, I am not surprised your stomach is churning, I know the feeling so well.
Wouldn’t it be wonderful if we got instant results.
Since my diagnosis 18 yrs ago I still get anxious before and during all tests and medical appointments.
I also feel out of control and I seem to spend my time awaiting other’s actions and results.
Perhaps for your peace of mind get your urine test and myeloma tests done first before getting your fasting cholesterol.
Be kind to yourself and please keep updating us.
Yes, I will do.
Dear @Jude13, I totally understand that you want these results as soon as possible. Fasting won’t affect the other blood tests so you can have them all done at once. I would avoid fasting when doing the urine test as it just may affect the amount of urine produced so best to be in a ‘normal’ state. Bence-Jones protein urine test and Plasma electrophoresis are both tests that specifically pick up any proteins related to Multiple Myeloma so these and the other tests are essential in the assessment process. I really hope that you get some answers soon and please know that we are on the phones 7 days a week if you need support. Kind regards Gemma
Thank you so much. I am on the way to the lab now to drop off my urine test & then have blood tests at 1.30. Feeling very nervous & hope the results won’t take too long.
Hi @Jude13, glad that you are on the way now. Some results take longer than others so don’t be alarmed, the full blood counts and basic renal, bone will only take a day but the others can take a week or so. All results are needed to conclude accurately. Do you have a follow up appointment or do you plan to call the GP? Take care Gemma
Hi @Jude13 brilliant response from @GemmaBloodCancerUK we are really lucky to have her knowledge.
I guess you are just having your blood tests right now, you have achieved a lot in 24 hrs, good jobs done. Now you have the worst time of waiting
Please let us know how and when you get your results.
Now really look after yourself
I was very lucky that when I was finally diagnosed everything moved very quickly and I didn’t have to wait. It was the getting the diagnosis bit that I struggled with. Completely normal for you to be so anxious. I hope you’ve got someone close at hand for support and of course all of us are here if you need to talk.
The blood tests didn’t happen yesterday after all. I went to an old factory unit that the NHS have recently started using, where they do Covid vaccinations also. It was packed full of people, with most wearing masks under their chins or noses! I am in the high risk group for Covid so after ten minutes of waiting & a few people coughing, I left. Seems so silly to have a booking system in place for blood tests, yet allow the place to get crowded.
I have now booked this Monday lunchtime. I telephoned the lab this morning, they said my urine result will be with the GP by Monday. I will email the receptionist on Monday & ask for a doctor to call me . I want the results and I don’t if that makes any sense. Another sleepless night again last night. Thank you so much.
Thank you so much. How are you doing? Are you having treatment? I don’t really have any support at home so it does make things a bit more difficult. It was also noted on my scan that I have moderate stenosis in the arteries in my neck. I don’t know how this has happened as I have low B/P, don’t smoke, I excercise & I only weigh 7stone 7lb. I eat a very good diet with no junk food so now I have to have a CT brain & neck angiogram also.
Yes, I am so glad for the support here. Thank you so much.
Hi @Jude13 ,I’m just picking up on your anxiety re the urine test and reading all the support you’ve had which is so reassuring. I had a Bence Jones urine test 2 years ago,think that’s what you are having, it was awful waiting so I get that, I was expecting to hear, because it was OK I wasn’t informed so it was a big releif when I chased it up.I have since learned to keep asking!! I do wish you all the best for a good result .
Re the not sleeping ,that’s a hard one ,I find the meditation exercises on the BCUK website really helpful, I’ve practised mindfulness and also the 4 7 8 breathing, this may be useful for you when you just want to run around screaming… or not !
Wishing you well .
Hi @Jude13 I am so sorry to hear about your blood test experience went, it really shows the difference in the NHS services. I hope it goes better Monday lunchtime and don’t be afraid to tell staff how anxious you are because you are high risk.
You put it so well when you say that you ‘want the results and you don’t’ it makes perfect sense to me.
If your GP practise should get your results on Monday, it might be Tuesday before they get a chance to look at them.
Unfortunately the cogs turn slowly sometimes and there is always an awful lot of time for us to anxiously wait.
Please let us know how you get on and be kind to yourself.