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 Reanswolf and welcome to the Online Community but sorry to see why you ha e found us.
I am sorry to hear your son has been diagnosed with HL, this point in time is a whirlwind but once all the treatment details are finalised the noise in your head will start to calm down. I have lived with my rare type of Non Hodgkins Lymphoma for over 20 years now and when I was diagnosed my consultant said that it would get me in the end.......fast forward 18 years I am now in remission - so be encouraged.
The waiting time in a Lymphoma is normal as it is very hard to diagnose and get correct but once treatment starts it does work very effectively.
As you have said - the staging in blood cancers should not be seen in the same light as in sold tumor cancers as the staging helps the Haematologists pinpoint the type and length of treatment.
I was stage 4a2 and all my Consultant said was “That is useful information and just confirms the treatment we need to use - now forget about it”
No amount of wishing or ‘what ifs’ can actually change this. The only way forward is to face this head on - it is what it is.
You will be surprised how resilient your son will be. The main challenge will be for you and the rest of the family to fight the actual battle that is going on between your ears. Once you control this, the road will get that touch smoother.
Make sure that you clear information about the lengths and types of treatment and come back with this as the HL folks can help you from their own first hand experiences.
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)
We are all around to walk this with you.
I think John would agree with me in that this is all about being an individual journey, one size definitely does not fit all and your son is a statistic if one.
As I said before about the stages my consultant was rather dismissive with regards them and said “ your job is to concentrate on getting through this and keep the end goal in mind - leave the rest to me”
When my team were positive that the treatment they were looking at could move my condition in a positive way then we would be delighted and we would move forward with some confidence. If it did not work out that way (that happened a few times) we just asked what was next and we started moving forward again,
My Respiratory Consultant is also a good family friend and he will always say that a positive atmosphere during a treatment journey will add a good 20% to the positive outcome of the treatment journey.
xx
