Dear all. I have only just joined this forum with the hope it will help my anxiety as have been feeling so distressed as I’m sure many of you can empathise. My 23 year old son was diagnosed with 2A Classical Hodgkin’s in August 2022 .. only symptom being a swelling on his neck ( no other symptoms and generally very healthy). He began ABVD treatment a month later and coped very well with minimal side effects and remained positive throughout . Both scans showed he was responding well to the treatment albeit the metabolic response on his interim PET scan was not complete for reasons unknown. Nevertheless the swelling completely disappeared and no other lumps appeared since. Following his end of treatment scan had the consultation today hoping we.d get the all clear and put this nightmare behind us only to be told there was a hotspot ( lit up) on his tonsils!!.. apparently was there on both scans but we knew nothing about it and has never been mentioned. Other than that no lymphoma detected in his body . Consultant said ihe doesn’t think it is sinister as is symmetrical but can be lymphoma and sending off for a biopsy. We are all so broken as we were praying it was over as my son is desperate to get on with his life and is distraught. We need to be strong and positive for him. Has anyone heard of it lighting up on tonsils or had any experience as I keep researching and can’t find anything. Dr is adamant it’s not another type of cancer. We are praying it’s just an inflammation. I welcome any comments.
Hi Distressedmum 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 Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Many many people have hot spots appear on their end of treatment scans. Some find that there is some residual cancer remaining and this can be mopped up using various other treatments….. often some radiotherapy.
For many the hot spots are scare tissue or unexplained areas.
I had a lump appear on my lung after all my treatments were complete. A CT guided biopsy was planned but by the time I went to have this done the lump was all but gone so nothing was done……. That was 7 years ago and the scar still shows up on my scans to this day but I remain in remission.
I had no cancer anywhere near my lungs but the area was showing….. chemo (I had many other treatments) plays with the body so unexplained ‘stuff’ happens.
It is an anxious time but all you can do is trust in his clinical team and look for a positive outcome soon.
Always around to chat and answer questions ((hugs))
Navigating the post treatment world is hard and takes time to develop the ability to separate ‘normal’ life stuff and post treatment ‘left overs’
As my journey was long and complicated (see the link below fir my cancer story) I have a number if left overs but nothing that stops me living life to the full.
You will come to realise that Scanxiety is a real word.
I found this article very helpful ((hugs))
What Is Scanxiety and How Can You Manage It?……. Choose Hope
The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments 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 scanxiety. 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 scanxiety.
Looking for a positive way forward to be found and that he can start his job.
