Hi , my name is Clive living in Portugal
My story started on 11/11/2024 with a large lump removed from under armpit, eventually getting the result after Xmas witha few question marks from biopsy, but generally a strong possibility of T cell angioimmunoblastic lymphoma.
As I had no B symptoms at all they suggested doing all the necessary tests before deciding on final treatment, which doctors say according to biopsy results is not an option. HOWEVER, all the tests are basically comin back negative with no relation to a any agressive activity of any kind .
Early stage ? Possibly a rare benign incorrectly diagnosed due to some inflammatory activity?
At the moment we are waiting for 2nd biopsy report and have already had second opinion on my current tests ( bloodwork , CT ,bone marrow biopsy and lastly PET scan) I am 62 healthy and fit ,
feeling 100% and although there are a couple of 1cm nodules left in armpit , they don't show any activity on PET scan.
Unfortunately in Portugal almost impossible to discuss testing and results and further testing such as molecular etc. if possibly should be considered in biopsy etc.
Once I get 2nd result I am waiting for details from one of your local UK institutions Royal Marsden Hospital which has excellent reviews where I can present my paraffin slides with whatever they deemed necessary to give me a final conclusion.
Anyway, just writing this down makes me already feel better and also knowing I will get some sort of advice from your forum.
I am also fully aware of how aggressive AITL can be and that stem cell transplant etc. would / could be in the pipeline to prevent early recurring problems.
Unfortunately Im clutching on to possibly false hopes as its now almost 3 months and Im still 100% , even put on a kg or two !
The PET scan was going to be the deciding factor , as the local hospital did not deem necessary rechecking the biopsy, as they believed PET scan would point the direction, but I actually sat with the PET scan doctor afterwards and was as happy as can be with my PET results!!
How do we make time pass by faster ? Thanks for listening as Im sure theres a lot of folks out there in much worse situations thinking how lucky I am to be feeling 100% fine .Thank you
Hi Portosanto and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your ongoing Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups.
I don't have Angioimmunoblastic T-Cell NHL (AITL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
Could I suggest that you join our dedicated.......
..... support group.
This group is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Click on the link above……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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