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Thread: Worried I have multiple mylenoma

  1. #11
    Super Moderator Top User po18guy's Avatar
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    You have a good plan. We are not trying to push you away - it's just that we would rather that you had no reason to be here. I think that once the anxiety is well controlled, much of this will fade. It will take time and effort to fight the anxiety, but the results shall be worth every moment spent.

  2. #12
    Hi

    So ive been for my xray. They only did one knee as thats all the form said. I was a little surprised when she took a third scan but im hoping she didnt get a good enough scan on the 2nd so took another. Just got to wait a week now. I rang the gp to see if i could get an urgent referral but the doc said no as i wasnt an urgent case..... I told her i was a mess and had bad anxiety and explained my worries but she said it wasnt a good enough reason for an urgent appointment so i'll have to see her next week when i get the xray results. The nhs is a great institution but it can be so hard to get an appointment as its stretched to the limit.
    Stage 2 of my plan is When i have my appointment im going to ask for a full set of bloods done again as its been a year. I have a list.

    Thanks

  3. #13
    Moderator Top User
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    Hi, I have been following this but not posted as the advice from Po was sound and the was little I could add.
    However I can now, re the GP refusing an appointment thats is not something that should happen as the surgery has a duty to have you seen if you ask for an urgent appointment, many do do screening these days but as its classed as mental health then they should see you, but it may not be the normal GP. Another option could be a drop in centre if you have them in your area.

    Also don't expect an urgent referral as my understanding is the is a waiting list so you might want to look at options like Mind if you have one near by.

    You do need to take control and push these thoughts back, our mantra is no one has cancer until you are told you do.

    good luck and hope you get the help you need and you have no need to return here
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #14
    Senior User
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    Hi,

    Please consider that your GP is very likely right in saying this is not an emergency. That doesn't mean that the final diagnosis might not be "serious' (nor that it is) - at this point, there is no way to tell. Rather, that whatever is ailing you is not life-threatening to the point of rushing medical appointments.

    My advice at this point would be to try to relax and let the diagnostic process take its course. Put some trust in the medical professionals and give them time to find out what is going on.

    I believe your best shot may be if you can manage to nudge your GP into referring you to a rheumatologist on account of your bone or joint pain. However, it can still take several weeks or months to get a definitive diagnosis, and you've got to keep breathing until then. So, look up yoga classes or other such relaxation methods, and be PATIENT. Your doctor has studied a long time and knows what she is doing. If there is anything to be found, she will find it, or will find someone who can. It may or may not be "sinister". Some very commonplace and "benign" illnesses can give you a lot of discomfort - it doesn't need to be cancer. Do not be afraid to ask your doctor for explanations as to what she thinks is going on and why - and do believe her. She is working for you - not against you.

    I hope this helps. Do keep us posted.

    PBL

  5. #15
    Thanks guys.

    Yes i was a little surprised she wouldnt see me as im sure she could tell by my voice that i was very anxious and needed help. Having said that from reading about anxiety medication, maybe she didnt want to get me started on them. The thing is, if this is bad news im going to need anxiety and depression meds to cope anyway as i know im already very anxious just at the thought never mind on hearing if my fears are correct.

    In all honesty, knowing my body and how bad my fatigue has become in this last year and all these continuous bone pains that never go away i have a bad feeling its myeloma. I really wish i knew this disease existed 2 years ago when all this started and i could have got it checked then. im surprised my gp didnt link multiple bone pain with myeloma but i guess i was only 46 at the time. It may be a long and painful road ahead. Ive read its incurable.

    I m going to keep busy and try and put it out of my mind best i can and see what happens next week. Its hard to forget when youre in pain.

    I'm not supposed to drink because of my liver but tonight im going to have a few pints at the pub.

  6. #16
    Moderator Top User
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    That will be true about meds as they try not to get people on them unless really necessary and when they do in cases like yours its only for a short time so cognitive therapy tricks may help you.

    From your posts it clear your anxiety is driving your gut feeling, it could also be exaggerating some of your symptoms making them worse in your head than they may be and whilst you won't see this we have seen this many times on the forum.

    good luck with seeking answers and managing your anxiety
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  7. #17
    Thanks Johnr
    I really hope youre right. Ive been having these pains for a long time now. They are deep aches that just wont go away even with ibroprofen. The pain in the centre of my back on one of the vertabrae hurts alot due to me breathing. (I actually thought it was my lungs at first) The pain isnt as bad when i'm laid down so maybe its because its not bearing any weight. I just got on with my life thinking it was just my age but now i think about it they have been there for so long with no respite. You are right im very worried, its hard to think about anything else.

    Ive rang my docs this morning to see if i could book an appointment to talk with my doc regarding the x-ray results but they didnt have any appointments until october. She said if there is anything wrong the doc will contact me next week as it takes 5 working days.

    When i first read about myeloma and it dawned on me just how much of the symptoms i have, i was thinking its good that ive had these pains for so long as it probably means its not mm. However, on further reading i realise that it probably still can be mm and the fact its gone on so long would mean its very advanced. There is just no simple reason i have the pains in so many bones, especially in my spine, shoulder blade and sacrum.

    I know that i should quote the cancer mantra but its so hard when you have so many pains and feel so weak.

    I think i may have gone crazy by the time i get a diagnosis. Think i'lk check out the nhs CBT site.

    Thanks
    Last edited by Brittlebones70; 09-14-2018 at 04:22 PM.

  8. #18
    Moderator Top User
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    We caution internet research and diagnosis for a good reason until you do get a diagnosis as its going to be hard for anyone now to persuade you it could be something else as has already been mentioned, hence PBL's advice, as polymyalgia is not to dissimilar to what you describe. But we are not doctors and would never try to diagnose, as thats the role of the doctor, I use that as an example in the hope you understand it could be anything causing your issues and on some occasions people never ever get a diagnosis.

    I am going to close the thread as you don't have a cancer diagnosis and the is no more we can do to help.

    If you ever do end up with a cancer diagnosis then we are all here to help, advise and support.

    best wishes
    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

 

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