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SLL lymphoma

Misty1617
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I was diagnosed with SLL Small Lymphocytic Lymphoma slow growing ( Indolent)on 16th Nov 2022.  

I have no symptoms except on 8th September I had a very sore right breast.  It was hot and painful  to touch. I also had a red patch just under my nipple and my nipple was inverted.  

I couldnt feel any lumps, and called the doctor to make an appointment which was 2 days later.   By the time the appointment came, all those symptoms completely dissapeard.  The doctor recommended I have a mammagram. 2 weeks later I had my mammagram and they asked me to have a scan which I did.    The sonographer said we have checked your mammagram and cannot see anything , but have noticed your lymph node in your armpit is enlarged,  but we don't think it's anything to worry about so won't do a biopsy.   The consultant came into the room and the sonographer told her what she said to me.  The consultant said we will do a biopsy just to dot the i's and cross the T's The biopsy was done there and then .

After approximately 8 days, they called me in to come and see them.  16th Nov The doctor said you have a very slow growing grade 1 non hodgkin's lymphoma. We have found some cancer cells in your lymph node, but nothing to worry about as this is quite common.    She showed me my history of blood tests which showed I have probably had this for about 5 years already.   They don't want to treat me until I present any symptoms such as drenching sweats, loose weight without trying, or I get swollen lymph nodes in my neck.  

I am currently on "watch and wait" I could be on that for years hopefully, but I am happy knowing that I will have blood tests every 3 months for a year and then hopefully be once a year. 

I cope knowing that if I do become unwell , I won't have to go months with trying antibiotics  and the doctors not knowing what's wrong with me only to find out I am already stage 4.  

 

So, the purpose of this message is, if anyone like me has been diagnosed with grade 1 SLL Non hodgkin's lymphoma , then at least you are being looked after and monitored by the Haemotology Team and given the correct treatment if the time came - hopefully not though.   

  • Hello Misty1617

    I'm sorry ot hear about your recent diagnosis of SLL. I wanted to post to say thank you for sharing your experience through diagnosis and how reassured you're feeling by the hospital team. 

    Often when people are given a cancer diagnosis it's easy to feel overwhelmed and anxious about what the future holds. Hopefully your post will help someone in the future who has a similar diagnosis to feel a little more reassured about things. 

    I hope that you remain stable and well for a long time to come. Don't forget that we're here if you ever want/need to chat and our team of nurses are available in you want to talk to someone. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline

    I was diagnosed with slow growing lymphoma but they are douing a pet scan and ct scan to see if they can find another location to do a second biopsy to find out the type as there are about 60 before they decide on treatment I don't have any other worrying symptoms either do am unsure why they are sending me for more tests and biopsies if they can't find another site to do a biopsy they may do a bone marrow biopsy 

  • Offline in reply to Janie1234

    Hi Janie1234

    Sorry to hear of your recent diagnosis.  

    You are right in saying there are over 60 subtypes of lymphoma.   To get the correct treatment for you,   they may  want to check if any other lymph nodes are affected before they decide on the treatment?  

    The Haematology dept give you a number to call if you have any questions , so maybe phone them to ask?   They are really good at making you feel at ease.  

    When I got told, I cried.  After speaking to my Haematology doctor, she was so good at explaining that slow growing meant just that,  it's slow growing and mine could have been there for the last 5 years after looking at my blood tests since 2017 (for other things and nothing to do with cancer of course) so right away, she made me feel so much better. 

    I am sure it is a worrying time, but you are in the right hands now and at least you are getting the full check over that you so rightly deserve!  

    Keep your chin up and keep me posted.  If you need to offload on someone outside family and friends, please feel free to write to me. 

     

    I wish you all the very best! 

     

  • Offline in reply to Misty1617

    Thank you it's just very worrying I had my pet scan and get my ct scan next Friday and my results on 9th jan to see what the next steps are.  

  • Offline in reply to Janie1234

    Of course you are worrying, it's the unknown.  

    Try your very best to concentrate on the slow growing as the doctors said.  They know from the previous biopsy that it is slow growing.  I am sure they just want to check all the other lymph nodes to see if you have any more and will treat them accordingly.    Hopefully, like mine,  it will be in one place only and you will just need to be put on  "watch and wait".

    The only advice I will give is to not Google it, as everyone is unique to their own cancer and as you and I know , there are so many sub types and so many people have different symptoms .

    Easy for me to say, but try and not worry until you get the results.  I am sure 9th January cannot come fast enough.  

    Good luck for Friday,  my fingers are crossed for you.  

     

     

     

      

     

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