Second change of diagnosis - Lymphoma

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Hi,

I thought it best to come back to the beginning to see which group I should join.

I've just been told after 2 reversals of thinking that I now have a complex lymphoma with secondary tumours in the testicles (not Testicular Cancer as they thought recently).  I have had the Orchidectomy and had according to the surgeon a huge tumour removed but after 3 weeks they still haven't been able to complete the histology, which may take a further two weeks.  In the meantime I'm to be referred to a Haematology Oncologist.

I have no idea whether i Have NHL or HL?  I'm alo not sure whther having a 'complex lymphoma' is a thing or they just mean its difficult to decide what type of lymphoma I have.

I would welcome some guidance on which group I should join or should I wait until I know more?

I've not formally left the Testicular Cancer Group because I now have some experience with Orchidectomy that might be helpful to somebody..

Many thanks for your help

Charles

  • Hi again Charles  Lymphoma is Lymphoma where ever it turns up in the body………  and it can turn up in multiple places in the body at the same time and still be Lymphoma……. so in reality there is no real  secondary cancer in Lymphoma…… but people with Lymphoma can develop ‘second’ cancers….. time will tell……. Lymphoma is at times very hard to diagnose.

    There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.

    Hodgkin's Lymphoma

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    T-cell lymphomas

    CLL, SLL and HCL

    ……. but as Lymphomas are ever so different, until you have a clear diagnosis then I suggest you stick to this discussion thread until you have that clarity.

    I have a rare (8 in a million) type of T-Cell NHL….. and it took rather a long time ( a year and 6 biopsies) to get the histology to proved the answers….. but that was 25 years back, my treatment journey was complicated but you can have a look at my story ……. and the encouraging thing is, 25 years on I am still here living a great life at 68.

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, Your story is encouraging.  Did you have to wait a year before receiving treatment? I'll take your advice and hang around and wait to see what my diagnosis is.  Many thanks Charles

  • Hi Charles.... my very experienced Dermatologist was 99% sure as to what I had so we started some low level UVB treatment quickly.

    I am just going out for the morning but do come back with any questions you have and I will pick up on them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi again Charles…… delving into the world of Heamatology you are going into a very scientific world as unlike solid tumour cancers Lymphoma is at its basic form a liquid cancer….. so where the bone marrow and Lymphatic-System goes so can Lymphoma and on the whole Lymphoma can’t be cut out.

    Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available if and when required.

    Getting clear information is very important so can I recommend you stick to the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

    You may find these two links helpful as they help you get the best out of your Heamatology appoiments.

    Top tips for getting the best from your appointments

    Questions to ask your medical team about Lymphoma

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Many thanks Mike,  I've followed your direction and joined their site - there are some useful questions that will certainly help my first appointment.