Hey

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Recently discovered I was BRCA2 positive and was going through the process of DMX, due to my BRCA2 it required me to have regular Breast MRI and mammogram. Had these 4 weeks ago and got called back for a biopsy which revealed I had follicular lymphoma. Not related to my current BRCA2 - anyhoo due to the consultant being a breast specialist I have not yet had any discussions about what this means, very scared but also trying to be positive as I would have never of known if I didn’t have BRCA2. Anxiously waiting for a full CT Scan 

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

    I don’t have Follicular Lymphoma (FL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin's Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    Your journey to diagnosis is actually not that unusual and often people can well have been living with their Low-grade non-Hodgkin lymphoma and have no idea. Being diagnosed with FL along with having your BRCA2 is very unlucky and would not have been seen as a secondary cancer but a second cancer.

    Lymphoma is the 5th most common cancer in the UK after Breast, Lung, Colon and Prostate cancers but most people just don't know much about Lymphoma and it's important to 'get' in these early days that Lymphoma is rather different from most other cancer because it is a cancer of the blood and on the whole very very treatable.

    The CT scan will help help stage you but unlike Breast, Lung, Colon and Prostate where getting a high stage of say stage 4 would be a poor prognosis it's just not when it comes to Lymphoma. Remember I was stage 4a back late 2013 and I am still here doing great.

    Staging in Lymphoma is 1) used to identify where the Lymphoma is presenting (it can show up anywhere) 2) what is the best treatment for that specific type and your presentation and 3) how long the treatment should last.

    You will find that most if not all folks with low-grade Lymphoma would take a Lymphoma diagnosis over a solid tumour diagnosis.

    Could I suggest that you try and understand Lymphoma so the links above and this link Lymphoma are good starting points.

    Please don't do random google searches as it is not helpful.......as there are over 60 types and sub-types of Lymphoma with some being aggressive..... FL is not.

    You will most likely now be referred to a Hematologist and this link will help you to start getting your top questions down in a notebook ready for these appointments Questions to ask your medical team about Lymphoma

    Always around to help more or just to chat and answer questions ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike, your words and obvious knowledge on this topic have give me comfort. Thank you for the links I will review now and write down the questions suggested. Thank you so much for your time.

    Kindest regards 

    Gem