Painful groin lymph nodes in remission and honestly spiraling a bit
I am writing this in the hope that it doesn't come true. I often read stories here from people being afraid of relapse and then never updating on it. I intend to update this post and hopefully come back with a negative result, so that others who look this up feel relieved, and so that I can look it up myself in the future to reassure myself that my mind can play tricks on me (hopefully it's just my mind).
I was diagnosed with Stage IV Hodgkin’s lymphoma in August 2024 with literally no symptoms at all. It was just a random find during a chest x-ray. I had bone marrow infiltration and got BrECADD treatment. After 2 cycles I was PET negative and got 2 more cycles, so 4 in total. Since January 2025 I’ve been considered in complete metabolic remission (DS3).
Since then I only had checkups every 3 months with bloodwork and sCD25 levels, which correlated with my disease before treatment (elevated before treatment, normal during and after treatment).
I often feel paranoid and anxious about relapse and get worried when I feel lymph nodes become palpable or hurt a little bit under my jaw for example. Funny thing is that I’m a cancer researcher myself, so I also know that a painful and movable lymph node is usually more reassuring than alarming. In the past, nothing ever escalated and I could calm myself down again.
In 2 weeks I have my next checkup planned (it’s been more than 6 months since the last one), and I honestly don’t know whether this is my mind going insane because the appointment is approaching, or whether this is something real. But the lymph nodes in my groin (both sides, though more on the right) have been hurting permanently and are palpable, and I genuinely can’t think of a single reason why. I don’t have any infections or anything else going on from my waist down. It’s driving me insane because I can basically feel them every second of the day without even touching them, just because they hurt so much. The stupid thing is that I NEVER had ANY symptoms from my cancer. Ever. Not a single one.
But now I feel completely paralyzed, unable to distract myself, and I already catch myself mentally preparing for chemo again, stem cell transplant discussions, and all the therapy options that could potentially be ahead of me. I feel like my life was finally going uphill again and I have so many ambitions and plans for the next years. Sometimes it feels like the universe is teasing me, giving me the feeling that life is becoming normal again just to potentially bring the disease back.
I’ll contact the clinic today and hope they can see me sooner than my appointment in two weeks so that I can hopefully (please please please) get a negative result and just move on with my life. I don’t want the uncertainty anymore, but at the same time I’m terrified of getting a bad result.
I’ll update this post and hopefully all of these anxious thoughts will look ridiculous in retrospect and remind us how much we can overinterpret small changes in our bodies.
TL;DR: Been in remission from Stage IV Hodgkin’s since January 2025 after BrECADD. Now dealing with painful groin lymph nodes right before my next follow-up and my brain is spiraling hard about relapse. Posting this so I can update later... hopefully with good news.