This topic contains 21 replies, has 8 voices, and was last updated by 
sallyw 10 years, 11 months ago.
hi im George, age 51.
9 weeks ago i snapped my upper arm which did not heal properly so i was sent for x-rays, ct scan, isotpbe scan, blood tests and urine tests.
after the bone doctor referring me to the blood doctor and then being refered to the oncologist 3 weeks ago i was told i had tumours and lesions in my bone and one blood test shown myeloma but would not diagnose myeloma until he was 100% sure so he has referred me to another bone doctor and then i have to go see the blood doctor in 5 weeks time,
my question is, how long is nornal to wait for a diagnosis and who will tell me for certain because if it is the oncologist i will have to wait even longer than another five weeks?
many thanks
George
Hi George, Myeloma is a blood Cancer and as such you will be under the haematologist. Normally they confirm that you have Myeloma with a Bone marrow biopsy. How long is it normal to wait for a diagnosis is like asking how long is a bit of string I am afraid.
kind regards – vasbyte
David
My collar bone fractured due to the myeloma gremlins chewing through it on 31 March this year and I was admitted to Ealing Hospital London. Because it was a pathological fracture (no fall etc etc) they immediately started tests, blood, urine, CT scan (looking for other primary cancers) MRI scan, skeletal survey and bone marrow biopsy. Within days they started muttering about this cancer i had never heard about called multiple myeloma. Haemotology consultant appeared around 4 April suggesting myeloma. Bone marrow biopsy confirmation came on 11 April. 12 days from fracture to diagnosis and I have no other symptoms-AMAZING! Now I know people knock the NHS and disparage Ealing Hospital, but in my 3 weeks there and subsequent treatment with radiotherapy at Charing Cross and now the CTD (cyclophosphamide, thalidomide and dexamethasone) drug treatment I have only praise for the whole system. If I were home in Australia there is no way I would have received this service free via our public health system. I think it is time for you to stand up and shout loudly….or try tears-they work too sometimes! Excuse the wordy reply but today is a 20 steroid tablet day….can't shut me up even on the iPad!
I was just about the same as Carolsymons I think any more than 3 weeks when they first suspect MM is too long,you don't say which hospital that may make things different I don't know. I am at Leeds St. James's. Ted
George, was your initial fracture due to a fall or other impact or did it just break with no real impact (a pathological fracture)? When I presented to A&E on Easter Sunday the X-ray showed no break. Without looking at me or the huge lump already evident in the middle section of my collar bone, he said they would just give me a collar and cuff and send me home to return in 6 weeks. Now I damn well knew something serious had happened so in my brash Australian way and despite being in excruciating pain, I whipped off my shirt and basically said "You have got to be kidding…look at this, I am not going home!" So he finally looked at the massive lump on my collar bone, called another doctor and within the hour I was in the Clinical Decision Unit, had been seen by an orthopaedic doctor, dosed up on oromorph and spent the night awaiting admission. That meant I was admitted on April Fool's Day -see myeloma already having the last laugh at my expense! Confession here …….there were a few tearstoo, mainly of frustration as we had been sat in A &E with no pain relief for more than an hour before any treatment.
The moral is don't be afraid to speak up, ask questions, shout or cry if you must, but without my loud mouth I would have been sat at home for 6 weeks waiting for a collar bone to heal, which never would have happened as it was being devoured by myeloma gremlins.
Hi George
Welcome,from being fit,you find yourself wondering how an earth could all this be happening,well it does and its a big big learning curve!!!.
Many people like you show no extra signs of Myeloma,at least they look if they have picked it up early enough,the way they start to diagnose Myeloma is with blood and urine test,there is different types of myeloma but all treated the same. The only way to confirm 100 percent is a BMB. As you are showing no other symptoms,I suppose they do not consider you are urgent, I would go back to your doctor and ask for a referel to a Heamatologist .
My advice is to ring Ellen or Maggi,or if you cannot wait until Monday,go to the section on here,that will tell you all the facts about myeloma !!!
The other thing about your bloods,is there are lots of related diseases ,Amyloids ,walderstomes ,they are looking at your Paraprotein ,Myeloma starts in the bone marrow anything over 10 percent,plus extra damage,Brocken bones,kidney function,will lead to a BMB this is the most important marker to diagnose Myeloma.
My husband was diagnosed with cracked vertebra,s plus osteopenia ,by a radiologist ,he was having othe symptoms feeling sick weakness,over a period of 6 months the doctor took blood test and gave him calcium tablets to take telling him,given time it will heal,after constant visits with no results,and the look from the doctor (stop fussing women), I saw another doctor in the practice,I explained my husbands problem,straight away she said there is a disease were calcium leaves the bones,the proper blood test was done,husband had AKF plus hypercalcma ,dur to calcium 10 day urgent referel . The rest is history.
When anyone is first diagnosed,you just want to get on with treatment,but it does not work that way unless treatment is urgent,the disease would have been there for awhile,so its not urgent.
We call this a roller coaster ride with good reason,and it lasts a life time,so there is no rush to join it.Eve
Eve, my having a pathological fracture with no other symptoms (my PP is 18 plasma cells 10% lambda light chains 526) has pushed me straight into treatment so I would worry that if George's fracture was pathological he should be receiving radiotherapy at least, if not the full treatment. I guess if it was a normal break then there would be less urgency to treat but the fact that the break hasn't healed in a relatively young man is worrying with myeloma talk in the background.
Hi George
Like you guys my partner Colin was fit and well right up to diagnosis, other than back pain starting about 6 weeks before a diagnosis. He was diagnosed within a month having had full skeletal survey, bone marrow biopsy, blood and 24 hour urine test! It a roller coaster alright! I don't thin now that you are on the radar George, that a few weeks will make a difference either way. They will plan and assess and then find the right treatment for you.
It is doable though, so be strong and hit this mm on the chin :-). We'd never heard of it before, now Colin has had front line treatment and a stem cell transplant!
Good luck with your treatment 🙂
Vicki and Colin x
Hi Carol
Any cancer patient should be referred to a consultant with in 10 days.
As I was saying,when you start chemo your immune. System is low,they will want the break to heal.
They only usually give radiotherapy for pain or if there is a danger that more damage is going to happen for example spinal cord compression.
This is why I told George to go back to his doctor and ask for a referel,as a patient who shows all the signs of M M he should have an appointment within 10 days BMB with in the week.
I was just pointing out that this roller coaster is for life,plus only one blood test showed Myeloma,it could be smouldering Myeloma or a one off plasmatoma or a related disease. They have not diagnosed it and until he has a BMB and they look at the bone marrow ,they do not know!!
My own husband is non – secretor so the only way of monitoring the disease is a BMB every 2 months,plus how he feels,so we know all about anxiety and worry,Yes George needs advice Ellen can give him some peace of Mind,yes he does need to see his own doctor,also his own doctor should have on computer,the consultants verdict,if he is not happy he is the one for an immediate referrel. Eve
Ps just looked at your profile ,so understand we're you are coming from,I am known for being blunt,do not take it to heart,
What regime are you on ,may be we can give you some advice about coping with the drugs and side effects.you sound very Dexitude,my family often wonder if I am on them,because this whole disease after 2 1/2 years non stop leaves you worn out and I am just a carer:-P ,so welcome Carol.Eve
thanks,
great reply, thats the sort of answer i was hoping for, its sounds like im at the stage of waiting or arranging a biopsy.
MANY THANKS
George
i have attached a pic of my x-ray if anybody can put any light on the situation, it happened whilst arm wrestling and the pic is about 12 days ago,which was about 7 weeks post fracture
thanks
Hi George
Well the break is very clear,but if you have a look around the fracture plus further down by the elbow you have round cloudy bits,I am surprised the radiographer did not do the whole arm,if you go into video. Plus scanning on here you will see different pictures of lesions,my own husband has them on his skull and shoulder blades,its were cells have gathered before it becomes a tumour,chemo will take care of it.
They will want your arm to be on the way to recovery as chemo will effect your immune system,you cannot afford any infection,
Please ring Ellen or Maggi,I think Elle iis at the Bournemouth. Conference,she is very good at explaining things,which will put your mind at ease..Eve
Hi George, I have Smouldering MM and it is 6years+ since I was diagnosed I had a BMB at my first appointment. I have no symptoms and no treatment ,I go to the consultant at the hospital every 3 months and have tests. As you see from all the people who post on here this is a very personal disease, and every one is different.Ted.
Hi George
The person you were arm wrestling with,I hope you bought him a pint,in away he has done you a favour.Eve
The topic ‘how long to diagnose’ is closed to new replies.
