My 14 year old son has just been diagnosed after biopsy.
Originally he had a small raised single under arm lymph node on and off for a few months, but just before Xmas it seemed to increase a lot and become tender, so took him to GP who offered "wait and watch" or refer to hospital, I opted for the latter. We were seen the following day but physical examination confirmed the single node and blood tests revealed nothing.
But a follow-up scan of the underarm node 5 weeks later on 27 January also revealed concerns with another swollen node in his neck nearby on his collar bone. Both about 3-5 cms. Small nodes less than 1cm also in groin, and a small one in chest according to CT scan. NO abdominal adenothapy (?) found on CT scan, though spleen enlarged with echoic (?) lesions. Biopsy confirmed it was Hodgkin's Lymphoma when we saw specialist in the week, but I am worried sick to the point I cannot function easily.
I guess its clearly at least Grade 3 as nodes now swollen on both sides of diaphragm, though the specialist did not tell me which stage it is, only that she feels we have a "very good chance of curing it". But my son was present so perhaps she was bound to keep us positive.
Awaiting PET scan now which could reveal it is at an even worse stage (Stage 4) if it picks up more cancer, which PET scans often do.
He has been referred to Birmingham Children's Hospital - we have an appointment next week - where he will get excellent treatment I am sure, but I feel everything is so slow, and over the last month it seems to have changed from perhaps a Grade 1 (single node underarm) to potential Grade 4.
It is terrible to watch as he seemed so well, loving his football etc, but now has a nasty cough and cold which may or may not be related. He still seems well apart from the cough and cold.
I know HL in some ways is a good cancer to get (if you can ever say that), but Stage 3 or 4 prognosis is often reported as relatively poor. Some people say that nearly all teenage HL can be cured or put in remission, only that the Stage will dictate length of chemo these days, not so much prognosis. Other reports suggest 95% of teenage HL have a 5-year survival rate, overall. Anyone else have experience of Stage 3 or 4 HL in children?
I just wish I could swap places with him, I feel so low - if someone literally offered me the choice of being decapitated right now to free him of it, I would do it with absolutely no hesitation. (PS I am not suicidal, just feel so low). I can't show weakness or have a cry as he is with me all the time, yet the future for him just feels so grim right now.
Hi Nick, progress is being made but these pre treatment times can be exhausting but once treatment starts a rhythm will start and life will settle down.
No, not all raised lymph nodes are cancerous, our lymph nodes are the bodies safety valves and can be up and down when the body is going through illness. So not surprised that they are clear.
It is important to take time out, I always said that my wife had a worse and more stressful time so I did insist that she had time out, I even contacted friends to make arrangements to get her away from the hospital as this is a marathon not a sprint.
Hi Nick, this truly is a safe venting place as we all know the times that it was good for the soul to vent.
In my book every person living with or caring for someone with a blood cancer are special, and yes blood cancer is bizarre......I lived and worked for 10 of the first 14 years at stage 3-4 before I needed Chemo, Radiotherapy and Stem Cell Transplant.
Even more bizarre is that 20 years back I was told that my condition would eventually kill me......but 30 months back my team said the goal posts have moved and they expect I will die of old age - I will take that.
