My husband found a lump in his left testicle early February but didn’t tell me for a couple of weeks.
I managed to get an appointment for him with GP on the 15th Feb. He was fast tracked for an urology appointment which was early March.
The consultant thought it was non malignant, a hydrocele but referred him for ultrasound to confirm. It actually confirmed there was a mass.
CT scan done and bloods taken. The CT showed it was cancer and had spread to liver and lungs.
An orchiectomy was arranged for middle of April.
We finally got called in for results and were told that he has Primary large B cell lymphoma of the testis.
I think even the urologist was surprised by the results.
We’re waiting for an appointment now with haematology.
I have found quite a bit of information on primary large B cell lymphoma, but not of the testis.
I have joined several forums now and the posts I’m reading have been very helpful
Hi Mumonamission and a warm welcome to this corner of the Community although I am sorry to hear about your husband. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of low-grade NHL (CTCL), then in late 2013 another type of more aggressive Lymphoma came along (PTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
The journey to your husbands diagnosis is not that unusual as at times Lymphoma is very hard to diagnose and can often 'look like' other cancers..... so not surprised that the Urologist was surprised.
I would guess that your husband 'type' is one of the group of different Diffuse Large B-Cell Lymphomas...... but in simple terms... the word 'Primary' in relation to Non Hodgkin's Lymphomas (NHL) is that the NHL can turn up anywhere in the body and 'all' the areas will be one in the same thing....... Lymphoma....... so when treatments are used they are often used to treat ALL the body..... apart from Radiotherapy where it is more targeted.
So in Lymphoma we don't use the word 'Secondary'........ Lymphoma is Lymphoma where every it shows up. I have a rare skin NHL and my skin was 70% covered with tumors at one point, it was in my neck lymph nodes and in my bone marrow..... but 8.5 years out from my last treatment I turned 68 last Nov and I am living a great life.
The Testing, scans and staging can take time but this is very important as one specific treatment regime does not fit all 60 types and sub-types of Lymphoma so even although you have been told Primary Large B- Cell Lymphoma there may still be some more digging to be done.
The world of blood cancer is very complicated so you may find the appointments with the Hematologist interesting but also challenging so preparation is important so you may find the 2 links below helpful.....
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
The most important thing at the moment is that Lymphoma on the whole is very treatable with great results....... the waiting part unfortunately goes hand in hand with blood cancers.
Always around to chat or answer questions as best as I can...
Hi again Mumonamission …… getting clear information is ever so important.
24+ years back before Google…… this was an advantage as we were not getting mixed information……. we used good old fashioned note books
Our note books go back all these years, with notes about what was said at appointments, treatments, meds i was on with dates and information basically covering all these years…….. like a very detailed diary……. but it had all the questions we wanted to ask and the answers we got.
It used to sit beside our bed and it was used at silly-o-clock to mind dump the thoughts that were buzzing in our brains…… there was nothing we could do about them at the time so dumping them on paper help d our sleep.
We had notes of all the clinical team names, contact numbers and email addresses…… and the back pages was used to right down our hopes and dreams for post treatment life.
We look back through the note books and see a lot of hopes and dreams ticked off…… there us life post treatment.
All the link I use are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
If you have any questions regardless how small or large do ask them.
