Hi everyone, nice to find some sort of community I can chat with about things. I was diagnosed in May this year with Low Grade non hodgkins lymphoma. I’ve had my six chemo treatments and immunotherapy, and feel good. I went for my PET scan two weeks ago and not heard anything back yet. I don’t know if this is a good thing or not - but I have noticed I have started very slight night sweats again - whether this is anxiety about results as i’m alreay paranoid it hass all come back even before I hear if it went away! Any advice on this would be great - many thanks - ste
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Hi @stevco and welcome to the forum.
I have follicular lymphoma and was diagnosed 7 years ago. Following the end of my radiotherapy I was really anxious. My PET scans varied on the times they came back. Waiting is just horrible isn’t it.
I completely understand that worry the lymphoma returning. However, it could be many things. I’m wondering if you have a clinical nurse you could contact whilst waiting for the PET results. It’s always good to check in with any new developments, if only to put your mind at rest.
Please keep posting and update us on how you are doing x
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Hi @stevco a great big welcome and I think, no matter what our blood cancer is, many of us know the feeling of waiting and not knowing. It is horrible.
In fact I have a friend also going through the same thoughts and feelings you describe and worrying about having a completely different condition.
You say that you were feeling good before your pet scan. and my nurse said to me anxiety can bring on so many symptoms and like for many reasons as simple as tensing up the body.
As @Nichola75 says why not ring up and see if the results are back yet or how long do they think they might be, that is why you have the contact details of your specialist nurse.
The Blood Cancer UK support line is there for you on 0808 2080 888
Just be very kind to yourself and please do let us know how you get on
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Thank you very much for your replies, I feel good in mysekf, people say i look really well, and i’m back to work as well. I think there is a pressure i feel, people asking when scan comes back, mum and dad saying they have bought a bottle of wine to open when i get positive result - everything is pointing at it being positive but i’m nervous about the slight possibility it won’t be. I had my scan at the beginnings of what turned out to be a slight infection and scared that will skew it as well
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Hi @stevco I think family and friends and work colleagues often say things to try and make us and themselves feel better.
My personal number one hate is ‘oh, you do look well’ when I certainly do not think or feel it inside. It now all goes over my head, their hearts are in the right place.
If you are worried about your results being skewed because of your infection do tell your medical team.
Please do let us know how you get on and be very kind to yourself
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Hi, thanks again for the great advice - i did phone them today and got really positive news - the scan is clear all bar a quarter of a centimetre bit - but they are saying it is incredibly positive news, so i feel at ease and now just hope my paranoia of it coming back doesnt get the better of me
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Hi @stevco glad that you got positive news.
Perhaps just give yourself time and be very kind to yourself to come to terms with it all and hopefully the paranoia will subside a bit.
I reckon that you have a very good insight into yourself and I think that is the key.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do keep posting how you are and really look after yourself
I’m pleased to hear this @stevco. Please keep us updated on how you are doing 
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