Scanxiety re relapse 4 years off treatment

[Howdoesitend]

Hi - hoping I can post here. My son was diagnosed with NLPHL back in June 2020, and relapsed a few months after surgery with stage 4. He had 6 rounds of r-chop chemo and has been ok at all checkups since, and I’ve consciously stayed away from this section as I just couldn’t cope with any reminders. We are all moving on with our lives and trying to forget what he’s been through. but he’s just come to me to say he’s found some lumps - one behind his ear which the doctor checked at his last clinic back in July and said it wasn’t of concern, but now there are three that I can feel in his scalp. He’s due in clinic for his 6 monthly checkup at the end of January, and I know I could ask for him to be seen earlier but I’ll wait a few days- my sensible head says it’s probably just a reaction to a haircut the other day, or maybe a few spots brewing, but at the same time I’m completely freaking out and googling ‘signs of relapsed lymphoma’. I don’t want to say to anyone IRL as the likelihood is that it’s nothing, but just wanted to reach out to others who understand the fear.

Oh you poor thing. For me I'd contact the clinic and explain what you can feel and see if they want to see him earlier. They probably will. Just try to remember that what you do doesn't change what the lumps are. It probably is still nothing. But if it is something you will kick yourself if you've waited. Best of luck x

Thank you. I hate this feeling - I got used to living with it and gradually it has moved to the back of my mind, so it’s been a shock for it to come roaring back to the front. Now I’ve slept on it (well, if you don’t count the hours spent fretting overnight 🙄) I’m reasonably sure that we don’t have anything to worry about but I’ll keep checking him over the next few days - I think he’s just reacted to the clippers where he had his hair cut rather than it being anything sinister. It’s a delicate balance between keeping an eye and giving my son reasons to worry when he just wants to get on with living. Clinic is scheduled in a couple of weeks anyway but I’ll call them if things change significantly between now and then. Thank you for understanding- only people who’ve been through this get how the smallest things can send you into a panic.

The spiralling is unreal - it just holds your chest and squeezes. All the best to you and your son x

I can completely sympathise. Its not quite the same but due to immuno deficiency my son is at high risk of developing lymphoma and leukemia in particular. I've done a lot of 3am revision on the signs and symptoms and what slight changes to his overall condition could mean. I've sat there debating in my head whether to contact his consultant because he's come up in some new bruises or do I wait until our next appointment because i dont want to be irrational or a pain in the arse. However, I've made a promise to myself that from now on I am going to make that call and chase up any new symptoms because I couldn't bare the thought of 'what if I hadn't left it so long'. If it turns out to be nothing at least we'll have that reassurance.
I know you said you want it all in the past and to move on with life but please contact the doctor. You'll drive yourself mad between now and his next appt with worry and panic. You've got nothing to loose by making that phone call. I hope he gets on OK and it turns out to be nothing. I also hope you can get the peace of mind you need x

Thank you so much for your kind messages. I know I need to make the call, but I’m so frightened. He had a dentist appointment today and I kept looking at his neck while he was lying back in the chair, wondering if I could see lumps or if it was just scar tissue from his surgery. It is probably just the anxiety getting to me in the run up to his appointment, but I guess at least if I let his oncologist know about my worries then he will make the decision for me. I hate this 😢

Quick update - I ended up emailing his consultant who wasn’t particularly worried so we stuck with the original clinic appointment., Saw a different doctor today when we went in, who also wasn’t particularly concerned but took bloods and is scheduling a U/S just to put our minds at rest. Bloods have already come back and they are all normal (although they always were). So everything is more than likely to be ok, and we will just wait for the ultrasound to confirm.

Sounds like really positive news OP, keeping fingers crossed for you and your boy

Sounds like it'll all be OK 🤞 glad you've got an ultrasound booked.
Its so daunting isnt it, I know how easily the mind can spiral so remember to look after yourself too x

Quick update - he had his ultrasound this morning, and while we could see the node that he’s feeling, it’s perfectly normal and nothing to worry about. So relieved but also so glad we got him checked.