Back in May my GP received a letter from my spinal surgeon to say I needed an urgent Oncology appointment, since then these are what they definitely know,
I have paraproteins in my blood
The Pet scan showed an uptake of cancer cells in my spine and pelvis (Lesions in 2 areas of spine and several on pelvis)
Initial bone marrow biopsy did not show myeloma
Pelvic bone biopsy showed abnormal cells
Haematologist now suspects Multiple solitary plasmacytoma
Nurse called to say the advanced biopsy showed a Plasma Cell disorder. They now want to repeat the pet scan, biopsy the spine and redo the bone marrow biopsy. To me this seems to be taking so long, has anyone else had experience of this? There seems to be weeks where I don’t hear anything, I’m assured there is MDT’s going on in the background, surely 6 months is an incredibly long time for this to be going on?
Hi @EmK72 a great big welcome to our forum.
You got me thinking and I have had some heart problems and loads of tests, some repeated, and yes, waiting for results and appointments and it has taken over 6ths to find out the way forward, I did not realise it had taken so long.
What I am in favour of is MDT meetings as I feel it is like second opinions on all aspects my case.
I am not a medical person and I do not know if my response has helped.
Perhaps you might ask the question of your medical team.
Others might have other thoughts and there is always the hospital PALS (Patient Advice and Liaison Service) if you wanted a more formal route.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Look after yourself and please do let us know how you get on.
Thanks Erica, I will do. There seems to be no information anywhere regarding Multiple Solitary Plasmacytoma, if I knew what I was dealing with I think that would help a little. I know it’s a strange case, as they tell me, but jeez, I’m needing the patient of a saint!
I, as many of us seem to be, are inpatient patients @EmK72
Please do use us on here to offload your impatience.
Look after yourself
Dear @EmK72,
Welcome to our forum.
I am sorry to hear about your experience. It sound like a really difficult and challenging time for you. Unfortunately from my experience as a specialist nurse I know that results can often take time especially when they need to be repeated. However, 6 months is an incredibly long time to wait and still not have a confirmed diagnosis. I would reach out to your Clinical Nurse Specialist (CNS) to let her know your concerns and frustrations. They may be able to speed up your repeat scans and biopsy dates and also discuss with your Haematologist.
I have enclosed some information on Solitary Plasmacytomas from Myeloma UK here which I you will hopefully find helpful Solitary Plasmacytomas
We would be very happy to talk over your concerns via our free support line on 0808 2080 888. It is open until 7pm this evening.
Take care and let us know how you get on.
Fiona (Support Services Nurse)
Thanks Fiona, I’ll have a read. I’m in touch with the Specialist Nurse, she’s been great, I think because multiple consultants at different hospitals are now involved this is why it’s taking the time, and I do know there are lots of meetings behind the scenes. One of the things that is really frustrating is the timeline which I sent to the oncology consultant and my GP to see if they could speed things up. This all started with a routine appointment with my spinal surgeon, the time taken to write to the GP, deliver the news to me, refer to oncology and first appointment is crazy. All of the tests point to a Plasma Cell Disorder, in my view the quicker I start treatment the better. Here is the first part of the timeline, what’s your thoughts?
8th May – Clinic with Spinal surgeon, need to be referred to Oncology and for a Pet-scan (He didn’t tell me this, just asked how my ongoing spine problem was)
18th June – Letter from Spinal Consultant to the GP asking to refer to oncology
27th June – Call from GP stating possible cancer diagnosis, fast track referral made
15th July – Awaiting MDT Response / advice
17th July – Call from Specialist Nurse at Hospital advising I need ct scan, ultrasound, Pet scan and blood tests.
So from initial need to my first contact with Oncology was almost 3 months, sorry if that’s a little rant, I just don’t know if any of this is normal.
Hi @EmK72,
I am pleased to hear you are in touch with your Specialist Nurse and she is supportive. As you say, when multiple consultants and different hospitals are involved, unfortunately this can slow down the process.
Looking at your timeline, I can see that the delay appears to be from your clinic appointment with your spinal surgeon to your referral to Oncology. Please can I ask if these departments are based at the same hospital? There is a delay in your GP receiving the letter to refer you to Oncology but I am wondering if this was due to the fact you needed to have a pet scan first?
As @Erica previously mentioned, you might find talking to the Patient Advice and Liaison Service (PALS) within your hospital helpful. These services exist to support people to resolve concerns/problems they’re facting with their treatment and care within the NHS, and should act as an advocacy service for patients. They can also support you with the complaint procedure, if needed. You can find your hospital’s PALS using this webpage here - Find patient advice and liaison services (PALS) - NHS (www.nhs.uk).
No need to apologise for ranting, This is what our forum is here for!
Take care
Fiona ( Support Services Nurse)
Yes the departments are kind of at the same hospital, the spinal surgeon works privately and at the nhs hospital, the oncologist via an email I saw did question him why he hadn’t referred directly but I didn’t see the answer. The pet scan was ordered via the Oncologist I had that in July, I had the ct scan (with dye) and mri’s in June. I will continue to be patient 
I’m just waiting on another pet scan and another bone marrow biopsy, hopefully they will come through quickly, thanks again for listening