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 again Paul Portosanto and well done navigating across to this little corner of the Macmillan Community
As I said in your post in the New to Community area I don't have Angioimmunoblastic T-Cell NHL (AITL) but I know the Lymphoma journey rather well as I was diagnosed way back in 1999 at 43.
My first type of Lymphoma is 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) …….
Then eventually I reached 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.
When I was diagnosed back in 1999 my consultant was 99% sure as to the type of Lymphoma I had but it took a full year, a few scans and 6 biopsies to actually confirm his suspicions…… at times Lymphoma can be difficult to pin point.
My story (LINK) had me have significant treatments over the years….. 14 years of skin treatments, 45 radiotherapy zaps, around 800hrs of chemo and finally 2 Allo (donor) Stem Cell Transplants….. and although my lymphomas are/were rare….. I am 9 years out from my last treatment, I turn 70 at the end of this year and I am still living a great life.
As for how you deal with the waiting…..
In the early days I sat with my great CNS (Cancer Nurse Specialist) and she was very honest “Mike, you can stress and fret as much as you want when you are coming up to scan time but the reality is you can throw all the stress and anxiety in the world at this and it won’t make any difference to the outcomes but the one certainty is - stress does make you ill…… control the battle between the ears and only worry when you are told there is something to worry about”….. and she has been spot on over all these years.
I found this article very helpful
What is Anxiety and How Can You Manage It?……. Choose Hope
When you are going through diagnosis the process can take a significant toll on your emotional and mental wellbeing.
Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.
Acknowledge your Feelings
Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your anxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.
Talk about It to the Right People
Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.
Practice Mindful Living
Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.
Distract Yourself
Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you laugh. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.
Ask Questions
Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything – from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean - don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.
Plan for the Worst Outcome…
Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help you regain your power as well as your optimism.
…but Visualise the Best
Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your anxiety.
