Hi,
Back in November I was diagnosed with low grade Marginal zone lymphoma, I had a 20cm mass in my thigh which was successfully treated with radiotherapy and two very small areas in my abdomen and chest which were put on active monitoring, I’ve had my post radiotherapy pet scan and got the results yesterday ,there is no longer lymphoma in my thigh hooray and my abdomen has stayed the same, however the one in my chest has grown by 10mm, I spoke to my CNS yesterday who said “ it’s unusual, it’s unclear if it is lymphoma and I need a lung biopsy, has any one been through anything similar as I’m very confused
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Hi @Lesley1.
You must have a mix of emotions with being given reassuring news following radiotherapy but then noticing something else on the scan. I like you would find it all really confusing.
I hope others can share experiences and remember the support line is there if you need to talk things through.
Do you have a consultation coming up to discuss this?
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Hi @Nichola75,
Yes it’s certainly been a roller coaster ride of emotions at the moment, I had a face to face meeting with the radiotherapy consultant last Friday who confirmed the radiotherapy to my leg was successful, and that my chest had grown by 10mm he suspected I would be kept on watch and wait, so I had a good few days, until I received a call yesterday after the MDT meeting, I’m going to see my consultant on Wednesday and hopefully I’ll have a biopsy date by then
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I’m glad you haven’t got to wait too long. Waiting is so hard isn’t it. Take good care of yourself and please let a know how you get on on Wednesday 
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Oh @Lesley1 all I can say is that it must such mixed emotions for you, but what I would say is it sounds as if your medical team are on the case.
I am glad you are seeing your consultant on Wednesday, please do let us know how you get on.
I will copy your question to the Blood Cancer UK nurses in case they can help . @BloodCancerUK_Nurses
Someone might be able to share their experiences,
Waiting and not knowing is horrible, yes, you must be confused and perhaps have a lot of thoughts and emotions, be kind to yourself
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@Erica
Thanks so much for copying my question to the blood cancer uk nurses,. It really is a real mix of emotions and very confusing!,I am so grateful that my hospital team jumped straight onto it and I’ll be seeing my consultant on Wednesday so hopefully I’ll have some answers
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Thanks @Nichola75
I’m very grateful I haven’t got long to wait, I find waiting and the not knowing the hardest of all
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@Lesley1 please do let us know how you get on and be kind to yourself
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Good morning @Lesley1,
Thank you for reaching out on the forum. Firstly I am glad that you have had a good response to the radiotherapy.
The scan results must be confusing for you, it is tricky to understand exactly what is going on and I think your team are doing the safest thing by taking a biopsy to confirm before they move forward. I think it is great that you have an upcoming appointment with the haematology team so you can get a sense of what they think might be happening, Unfortunately there might be a little bit of a waiting game now to get the biopsy done and then get the results through, but it sounds like you team are doing all the right things.
If you would like to have a chat with one of us ahead of your appointment or even after we would be happy to talk through things with you, do call us on 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
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Hi just a little update, I saw my haematologist on Wednesday, she confirmed she would like me to have a lung biopsy to ensure it was still part of my lymphoma process or to see if it was a different pathology.which would need appropriate treatment. I fell well in myself and I am so grateful my team are on the ball and checking everything i had my biopsy yesterday at a different hospital.i do have a very hoarse voice today but otherwise im fine, just got to wait for the results now
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Yes, @Lesley1 it does sound as if your medical team are on the case.
Now it’s the waiting for the results which I know is horrible, but please do let us know how you get on
Take lots of special care of yourself
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Hi @Lesley1.
Thanks for the update. It’s good to know how you are doing.
I’m glad the biopsy went ok but make sure you rest. Things can take their toll physically and emotionally.
It’s really good to hear you have a good medical team around you. I hope you don’t have to wait to long for the results!
Take good care of yourself and keep us updated
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