Hello there @Pollyp777, welcome to the forum. I’m sorry to read of your diagnosis last year with Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))), and of losing your husband to cancer.
Although I live with a different diagnosis of Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))), I can empathise with your concerns. From my non-medical perspective, it helps to understand our diagnoses and our doctors should be able to support us in that.
Perhaps this Blood Cancer UK information about Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))) might help and offer ideas for what to raise with your doctor—you never know, it might even teach them about your diagnosis: MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
Hope that helps a little @Pollyp777, do please keep looking around the forum for others living with Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS))) as you’re not alone.
Thank you for replying to me, I’m sorry to hear of your diagnosis and hope that you are managing fairly well. I know a small amount about your diagnosis as I was tested for so much last year as so unwell and that was one of the things being looked at. It’s all so confusing and I like to think I’m pretty on the ball with things but nothing my gp is coming back with makes sense to me, and she admits she doesn’t understand what haematology have said either. Today I called blood cancer uk, myeloma uk and Waldenström macroglobulinaemia (WM) uk and none of them have heard of what’s been said to me so I’m at a loss at the moment. I did call the haematology dept where a lovely nurse did attempt to look at my results but also said she didn’t understand them but couldn’t refer me to anyone as I hadn’t actually been referred by gp. She advised me to call gp tmw and ask for her to request the haematologist she spoke to, to explain to me either over the phone or in writing and that I’m perfectly within my rights to request this so I will try that. I can handle waiting if I understand the situation but what I’m told is making no sense to me presently and I don’t want to get six months down the road to a completely different scenario because of an error. I’m sure this gp thinks I’m a total nut job asking all these questions, I’ve never spoken to her before this week, it’s another new doctor, none of them seem to stop long enough these days to get to know like years ago with your family GP lol showing my age!
I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) in 2010 and like you was monitored every 6 mths via blood tests. It was always a bit stressful waiting for results, but I managed to stay clear until July this year when it finally went to Myeloma. I started chemo -DVTD- in August and hopefully will be having a stem cell transplant in the new year.
You’ll find that you will be more susceptible to viruses etc going forward, but at least you are now in the system and can be treated accordingly.
Note - I used to have to explain my condition to healthcare people not connected to haematology.
No treatment for you yet, so make the most of your time and good luck going forward x
Sorry to hear you have had to start treatment and hope that it is going well for you. My immune system has been bad the last few years, and I ended up diagnosed with Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) after infection on top of infection last year. I’m very careful now to not burn the candle at both ends and take supplements etc and am much healthier than last year. I have some symptoms but could also be flares of fibromyalgia and also peri menopause although my bloods don’t indicate menopause. My worry is I have igm lambda paraprotein and have had no light chain involvement until now but the strange thing is I have high Kappa and high ratio which just seems very odd with igm lambda unless 2 things going on. Doctor is saying haematology say this is separate and to wait 6 months to check light chains again as could be due to inflammation - odd when not been ill recently and I can’t find any reason anywhere why I would have high kappa?! Unless I have biclonal gammopathy in which case is 2 separate things going on which increases risk and should be monitored more frequently. Totally confused!
sorry to hear this, do you have two different findings? I saw my new doc yest she’s absolutely useless and I won’t go to see her again. Has told me to make one appmt a time per symptom, given me cream to stop nose bleeds and agreed at a push to retest in 3 months. I’m told bruising can be more so in Monoclonal gammopathy of unknown significance (MGUS) and the pains I have in hips elbow and knee, put me forward for physio. I asked why certain areas get a bone marrow test and she said that’s how it is and when I said it’s hard enough to get your head round initial Monoclonal gammopathy of unknown significance (MGUS) diagnosis and where it could potentially go and I may have 2 different plasma disorders/Monoclonal gammopathy of unknown significance (MGUS) - one and that can change things future outcomes, she said hes it is another curve ball! Real help lol!
Hello again @Pollyp777, I’m so sorry to read of how your specialist doctor has been communicating with you about that Monoclonal gammopathy of unknown significance (MGUS) diagnosis. How frustrating I’d find it, you’re doing well not to lose your temper!
Perhaps it’s time to contact NHS PALS to seek support in getting a second opinion? Apologies if you’ve contacted them already, but from what other forum members have said PALS can be super helpful in situations like yours: What is PALS (Patient Advice and Liaison Service)? - NHS
Your self-care is impressive so try not to let all this get you down while you await some clearer guidance from specialists.
Hello @Duncan thank you for taking the time to reply and for your kind words. This is just my gp, I’ve not seen or spoken to a haematologist. Last week I called haematology and the nurse told me to ask my gp to ask the haematologist to write to me to explain their findings but she shrugged me off, when I asked. She said she can refer me but I won’t get appmt until after 3 months so may as well wait until next blood test first. I appreciate others have worse than me and I apologise if I seem a whinger, I don’t want to be I’m just someone that’s better with knowledge and I just can’t find anything anywhere that explains my results, so it’s causing me severe anxiety. My only theory is that I have two types of Monoclonal gammopathy of unknown significance (MGUS) which I’ve heard of rarely, but not without the m protein in both or with conflicting light chains. I made the mistake of telling my GP about my husbands rare cancer and she then questioned my psychological state implying I’m being ridiculous, which went down like a lead balloon I can tell you! I have spoken with PALS in the past regarding the care of my mother who has dementia, I don’t know if they deal with GPs or just hospital.
Oh you’re most welcome @Pollyp777, and apologies for misreading that it was the latest GP complicating things—their collective confusion is definitely confusing! I know exactly what you mean about the days of expecting to see your own GP being long gone. Personally I would not tolerate a doctor making the insinuations yours did.
You seem to be getting the run-around from doctors. Unless your GPs are private, PALS should be able to support you receiving the care and diagnostic tests you’ve been seeking. It should not fall to us to chivvy all this into action, it’s stressful enough!
Although a slightly different situation, my first haematologist just kept getting stuff wrong in what little advice he offered about me being stuck with Polycythaemia vera (PV) for life, and worse yet he forgot what treatment he’d prescribed me (chemotherapy!). So he had to go, and it was only after I changed to a different, caring doctor that I came to feel less stressed by it all and my treatments began to stabilise.
Perhaps you’re fortunate to have a different GP practice locally that you could change to? I understand it can be a lot of hassle to swap, but maybe worth it for peace of mind in future? My dad got tested after my Polycythaemia vera (PV) diagnosis and his local GP took so long to give him back his gene mutation test results that he had to contact PALS, and lo and behold his doctor suddenly shared them (thankfully negative).
You can always call the Blood Cancer UK nurses who are specialists and lovely in my experience, their free number is 0808 2080 888.
Do please let us know how it goes @Pollyp777. If it gets too much try to take a break and then you can always resume your efforts another day.
Thanks for the info @Duncan Im sorry to hear about your doctor, that’s pretty awful but I’m sad to say I’m not surprised following things I experienced with my husband. I did speak with blood cancer uk who hadn’t heard of my results, sent me info on Monoclonal gammopathy of unknown significance (Monoclonal gammopathy of unknown significance (MGUS)) and suggested I speak to speak to gp again. I’ve spoken to myeloma uk and wmuk and neither of them could help either. It is just a local gp surgery but it’s moved and got so much bigger to accommodate local army camp and families and I simply think they have let things slip terribly there and as for this new gp of mine, they didn’t even tell me old one left - well she can do one! My son is absolutely fuming telling me to put complaint in but think I’ll ask for referral to haematology first so hopefully at least on the ladder. It’s him I feel the worst for l, hes only 23 and only has me after losing his dad, and several other family members, and things like this really don’t help in already difficult circumstances. I’m trying to speak with a private haematologist but closest 2.5 hours away and in honesty I don’t have the money but will find it if they think bone marrow biopsy warranted. I accidentally sent details to wrong email address for the clinic today so hopefully will receive a response after next weeks clinic. Again thank you for taking the time to reply to me!