I have had numerous tests and scans for an enlarged spleen and other symptoms. My recent CT PET scan showed the enlarged spleen but not much else. In my appointment this week the Hematologist said the only cause is likely to be a blood cancer, BUT that my bloods and scans didn’t show anything sinister, so she would do something called active monitoring? Does this mean I have blood cancer and she will wait until it gets worse before starting treatment? I forgot to ask anything as I was processing it all.
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Oh @CONFUSED, all I can say is are sound confused
It is so difficult when so many conditions share the same generic symptoms.
You mention that you have been put on active monitoring.
This means regular checking up on you to see the progression, or not, of any symptoms you might have.
I was diagnosed 20 yrs ago and I have been a very lucky girl and been on active monitoring, or watch and wait, ever since being monitoring by my haematologist or GP.
You now have the opportunity to write down all your fears, questions or practicalities that you want to ask and perhaps be pleasantly assertive.
I still get anxious, before, during and after all tests, results and appointments.
Personally I think the not knowing and waiting is very confusing and anxious making.
Look after and be very kind to yourself and please do keep posting
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Hi @CONFUSED I was just wondering how you’re doing and whether you’ve got any further answers! We hope you’re doing okay - we’re here on 0808 2080 888 if you want to talk things through with one of our nurses at any point! Take care, Alice
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@CONFUSED Hi.
Firstly I’m not medically trained/qualified but like many on this Forum I’m a patient with experience.
Not knowing if it is malignant or not is not always easy to accuratly diagnose and therefore refine the best treatment if it is.
Having an acute condition means fast developing and the treatment is likewise. A chronic condition is slow developing and it is not unusual to be monitored periodically to determine if there is progression and if there is when to commence appropriate treatment.
I’m under treatment for a Lymphoma of which there a over 70 types and subtypes. I was put under ‘active monitoring’ or ‘watch and wait’ for 10 years before the condition was affecting my QoL. During that montoring I was diagnosed with a Monoclonal gammopathy of unknown significance (MGUS) which is a catchall for there’s something in the plasma/blood but the U is for unknown/undefined. In fact I was initially considered by some to have a Myloma, something treated by different therapy.
To extend this point further during the Covid vaccination programme those with Monoclonal gammopathy of unknown significance (MGUS) were/are not classed as having Cancer and therefore not immunosuppressed and subject to priority / additional care.
Until they know what is going on they are reluctant to give specific diagnosis and when they do they give it it’s medical name. They very rarely use the the word cancer.
I do hope they are thorough in their lab tests, in clinical Haemotology and Immunology and get to the bottom of the your issue. Not knowing if things are potentially getting ‘worse’ is a mental torment I know many suffer. That’s why forums such as this can help.
If it’s in your character be a self advocate and be politely assertive for answers from Doctors and Nurses, but don’t self analyse via Dr Google, that can be even more worrying. Support and advice from BCUK and other such dedicated groups is far better.
There are folk on here who have been on ‘Watch and Wait’ for over 20 years.
All the best and hopefully they get you sorted.
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Hi @CONFUSED
I feel for you ! and your need to get the most out of your appointments with your medical team. That’s completely understandable, especially when needing to understand a potential diagnosis.
I would try and get in touch with your team:
- Prepare your questions beforehand: Write down all the things that are unclear and worrying you. This helps you stay focused during the appointment/ call as that time can fly by.
- Don’t hesitate to ask for clarification: It’s common to miss details during appointments. If something doesn’t make sense, ask your doctor to explain it again.
- Consider talking to the BloodCancerUK team: They are a fantastic resource and can help you understand complex medical information. They can also help you formulate questions for your team. @BloodCancerUK_Nurses and the Blood Cancer UK support line is there on 0808 2080 888
Do let us know how you are doing.
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I have Chronic lymphocytic leukaemia ('CLL') on watch and wait i have no treatment yet but i am worried of what is to come
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Hi @Hill17, and welcome to the Forum - though I’m sorry to hear you’re carrying that worry.
You’re definitely not alone with this feeling as someone in active monitoring. But as lovely @Erica and @Iain have shared in this thread, many people live really well with Chronic lymphocytic leukaemia ('CLL') on active monitoring for a very long time.
There’s an inactive but lovely supportive thread here that might be worth a read, and if you’d fancy posting in it then there’d likely still be a number of people in it who are active. And if you scroll to the bottom of this thread you’ll also find the Related section, which shows other conversations that might be useful.
We also have some information specifically about CLL and watch and wait on our website, which might be helpful.
As @Jules linked in response to someone earlier in the thread, if you’d like to talk any of this through with one of our fantastic Blood Cancer UK nurses our free Support Line is always there on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Keep posting whenever you need to.
Ceri - Blood Cancer UK Support Services
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Hello @Hill17 I am so glad that you have found us.
I can really understand your feelings and thoughts, I felt very similarly when I was diagnosed with Chronic lymphocytic leukaemia ('CLL') 22 yrs ago now. I have actually been on Watch and Wait ( or I like to call it active monitoring) for that time. I could not get my head round that if I had been diagnosed with a blood cancer why was I not having treatment straight away, My work definitely could not understand it either.
You don’t say if you have any symptoms but my main one is fatigue and I have learnt to manage it over the years. I have realised that nobody in this world knows what the future will bring so I now make the most of what I do have.
However for me all this took time so In would say be ever so kind to yourself, look after yourself and give yourself time.
I am now going for a walk to see lots of children play football.
@Ceri_BloodCancerUK has given you a great response and we are here to support you and I look forward to your posts
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