Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

14-year old son diagnosed with Hodgkin's Lymphoma - worst feeling in the world

Reanswolf
Posted by

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.

Nick
Thehighlander
Posted by

Hi 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.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi and sorry to read about your son, the are a few parents who's children have had HL who use the site so hopefully they will see your post and offer reassurance.

I had NHL stage 4 and let me reassure you the stage with blood cancers is very different when compared with solid tumour cancers, it is as you mention used to inform the treatment plan and because its a blood cancer and the treatment is to the blood, it goes everywhere where the HL is presenting in his body at the same time. Treatments for HL are well established and normally very successful.

In April it will be 10 years since I had my diagnosis and the are lots of others around to and remember children are resilient and often take things in their stride, so I am sure he will be fine and bounce back after treatment.

Any specific questions just ask

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Daisy42
Posted by

Hi Reanswolf, just want to add my support here.  I was diagnosed with stage 3a HL in March 2015 and finished treatment in September the same year.  Apart from being bit more susceptible to bugs I’ve been fine. Your son is young, strong and fit going into treatment.  And because you were very vigilant it looks as though everything will move quite quickly.  He’ll most likely have ABVD chemo which is the gold standard treatment and has brilliant outcomes.  I know how terrifying this all is, especially seeing your child go through this so hopefully someone will come along soon and give their insight from a parents perspective.  Please keep posting as the folks on here have a wealth of knowledge and can help you and your son through this tough time. Big hugs, Dxx

Reanswolf
Posted by

Hi Mike, John

Thank you both very much.  Really appreciate you both going to the trouble to respond in such detail.

The devil is in the internet, I am really scared because on his letter from hospital it has all his blood readings one of which is HDL that is 633. Looking at one study of kids with HL, where HDL was corresponded to Stage, it suggests the level HDL my son has is between Stage 2 and 3 (nearer to 3), but PET scan may add higher Stage.

But I am particularly worried as higher HDL apparently corresponds to poorer prognosis, which of course correlates to a higher Stage. Such a scary situation.

Nick
Reanswolf
Posted by

Thanks D, much appreciate it.

I also feel we should have taken him to GP much earlier whilst his single lymph node was small and going up and down, only when it expanded did we take him.

I feel so guilty and of course I cannot turn the clock back.

Nick
Minks
Posted by

Hi Reanswolf, 

my husband had Hodgkin lymphoma stage 4a ...he had a huge mass of 10x5 in his chest and some small bit in his spine ...I was exactly like you when I heard his staging ..essentially totally freaked out ! However our specialist explained as Mike and John have said that staging is not the same as in solid Tumor cancers...it is usually very responsive to chemo and the staging is used to help define what treatment to use ..plus a lot of the statistics on the web are not up to date at all  and don’t take into account very elderly patients or ones with underlying health conditions etc ...I’d personally stay away from all that and focus on your own specialist advice..ours was completely un phased by the fact he was stage 4 and said that he was confident the chemo would do a good job. It was a journey full of unpredictability...which turned out to be very positive ( read my bio if you want to know the whole story ) ...anyway needless to say he is cancer free and active and full of energy and staying positive for the future. 

Reanswolf
Posted by

Thank you for your reassurance, very kind of you.

It is great to hear so many positive stories.

Nick
Thehighlander
Posted by

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

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Reanswolf
Posted by

Thanks Mike

I know how I feel revolves to some considerable degree around self-pity and even self-blame (my genes etc).

The most wonderful thing in the world to me is perhaps going to be taken away from me.

That thought never seems to leave me.

I just love him so dearly.

Too young too go, he's only just started his life. He came home from school and since telling a few friends he has cancer, he feels no -one wants to talk to him, just sat by himself at lunchtime in the playground.

But whilst it tears me up inside I do know I have to be incredibly positive for him.

Thanks again.

Nick
johnr
Posted by

Hi Nick, don't get hung up on the blood results as Mike has said we advise everyone they are unique and their version of the disease is unique to them and all that matters is the treatment works and these days the general stats are good if that helps, but we are not stats and if its hard to move on from stats and things you have read, a good friend said to me why should you not be a good stat, someone has to be. So its glass half full or half empty. 

Cancer is scary when we are first told if we allow it to be, as for staging its straight forward, have a look here on this site or the lymphoma action site, it along with bloodwise are good sites for information. read this and it explains and should reassure https://www.childrenwithcancer.org.uk/childhood-cancer-info/cancer-types/hodgkin-lymphoma/

notice no mention of blood test results to inform staging 1 to 4 

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Reanswolf
Posted by

Thank you very much again John, the amount of time you and other posters (Mike) have taken to try to reassure is so genuinely kind.

I know there are no guarantees and I really have no right to expect such a prognosis either.

Nick
johnr
Posted by

Nick, here is another good site for you both, https://www.clicsargent.org.uk

As for school I am sure it will sort itself out once everyone knows, often people don't know what to say, but I have found young people inquisitive and supportive, have you spoken to the school and does his form teacher know? they can do a lot to support him and help if that's what he wants.

As for prognosis when the consultant was talking to you both about cure they meant it, the one thing they are is honest especially with children and parents, the are a number of parents as I said who post and they fully understand your feelings as do we patients just about, as we all hope for the best and prepare for the not so good and shield those around us. Is he being treated at a children's cancer centre as many have special wards/wings where teens can feel more comfortable as they receive treatment.  

try to take things a day at a time at present and don't think to far ahead. 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Daisy42
Posted by

When I think back I had a swelling on the left side of my neck for a good while....my mum in law was really ill at the time so I pushed it to the back of my mind.  When I did go see about it I was told it was most likely infection/reactive node.  Two GP’s initially treated it as an infection of my salivary gland.  A couple of rounds of antibiotics later still no change.  It was a trip to my dentist who then referred me to a maxi facial surgeon when things finally got moving.....  I think a lot of people have a similar experience and worry that the delay means a poorer outcome....My consultant said staging doesn’t really matter in blood cancers.  In fact a lot of people with stage 2 will be treated with exactly the same chemo regime as someone with stage 4.  Please don’t beat yourself up... he is now on the way to getting it sorted.  As for his friends...maybe a gentle word to the kids or even their parents would do the trick? They’re probably a little shell shocked and don’t know how to handle it....You sound like a really brilliant dad and he’s very lucky to have you! Take care, Dxx

Reanswolf
Posted by

Many thanks John, I’ll check the website out.

The school have been great but I think we are just in shock and mourning.

Birmingham Children’s Hospital will be treating him which is a Centre of Excellence. But we will be receiving his chemo over some time more locally.

i hope things get easier over the coming days as your body and mind adjust to the situation.

Thank you John.

Nick