Hello Mel,

A warm welcome to our forum. What you experienced as a child is bound to have left a deep mark both on an emotional and physical level and it can help to talk to other adults who have had cancer as a child and share experiences with them of how it all affected you.

I thought I would go and look on the forum for other adults who have mentioned before on here that they have had cancer. I hope you will hear from [@Rach28]‍ who posted a while ago on this thread and mentioned she had melanoma when she was 18 months old so hopefully she come and share her story with you.

I also found another member [@Simchip]‍ who had Hodgkin's Lymphoma as a child over 40 years ago and posted back in 2013 on this thread so may no longer be checking the forum regularly, but it would be great for you two to connect and get chatting here!

I am sorry to hear you have been feeling anxious about the late effects of chemotherapy and that you have been feeling very tired and suffering from aching bones and memory issues. Perhaps it is something you might also wish to discuss with your doctor? It is always worth if you are worried about anything bringing it up with a doctor or asking for a second opinion just to get reassurance.

I will now let others who have experience of childhood cancer come and say hello and share their story with you.

Best wishes,

Lucie, Cancer Chat Moderator

Hi. you are not alone. I had treatment for ALL. so although iv had a different kind to you I went through chemotherapy and have also suffered some possible long term effects, mainly the memory issues ,pain and fatigue. Was diagnosed cfs and possibly have pots, may or may not be an after effect, certainly other possible causes in my case but wanted to let you know you're not alone with dealing with these things after being a childhood cancer suruvivor. I think its poor your oncologist has dismised you so much. its a known thing that these treatments can cuase effects in the long run and they should be open with you about that. feel free to talk to me on here . I think the main support us survivors can get as a whole is supporting each other as we know what its like, best wishes x

Hi

I had hodgkin's lymphoma aged 16, 29 years ago in 1991. I had chemo and radiotherapy to the chest and neck area. I have since had problems with my lungs,  chest infections,  breathing problems; I have not been able to eat without a drink since then as my oesophagus is constricted and I have trouble swallowing; I have a dry mouth,  frequent cold sores and lots of cavities/fillings (a dentist once insulted me,  despite having my medical history,  I left, but now have a fab dentist); my sister had the same at 15 years old, five years before me, much more advanced and has had a lifetime of illness/late effects ever since,  including not being able to have children. We are both truly,  eternally grateful to the medics and the NHS and agree that living with the late effects of cancer treatment is still living... I do however wish I had known more what to expect. I'm only just putting 2 and 2 together, the issues with my health that have emerged.

I have thyroid treatment, thyroxin, anti-depressant medication for hormonal changes and breast screening every year. I'm 45. I have two healthy teens (praise God).

Hi sorry to hear about your late effects , I to am a childhood cancer survivor I had leukaemia in late 80s , I am now suffering  with late effects I was given cranial radiation to central nervous system and methotrexate which together was shown not long later to cause (toxicity ) I too have been insulted by a dentist for cavitys. I only found out about late effects decades later when I developed heart problem only then did I start to find out the reason my health has been going down hill , when a consultant said to me we dont see people like you living full life , only then did things become a reality I said what do you mean people like me he explained survivor s of ALL  , I have always been in contact with my hospital I was treated in since a child and I'm still reviewed by them , your hospital who treated you can hopefully if you contact them give you a long term medical plan of things to look out for things that could possibly get and what gp s need to be aware of , I found the charity CCLG  had information on care plans and late effects , unfortunately there is nothing they can do about the damage to my CNS from cranial radiation the toxicity , and my life has changed dramatically and  I have struggled and still struggling to get my head round it and I'm still trying to get my answers which I am slowly getting there but they say i will only decline and one thing about this which shocked me was this accelerated ageing that I could be 20 to 30 years older because of my treatments. I recommend looking into that charity and contacting the hospital that treated you as there are late effect teams in some hospitals now . Also everybody's late effects are different it's based on age wen had treatments , dosage and combinnations ext.. so not all people who had ALL will get same late effects there are many different protocols and treatments improved in the 90s and kept improving only a late effects doctor knows your own specific risks. Unfortunately I had those two treatments together which are now well known to cause toxicity and were stopped 2 years after I had them. St judes s hospital in America did a lot of studies in to late effects. Macmillan wrote an article called ( A cure but at what cost ) it talks about late effects , I hope you find the answers you need and keep fighting till you get them. 

Thanks for your encouragement and advice. I think I will get back to the hospital that treated me and the late effects team there, though with everything that's going on perhaps not soon! I was under xxxx hospital  and they were fantastic. Unfortunately, I chose to transfer my 'case' to where I live to avoid travel and seem to have been lost - that said, xxx hospitals are fab, especially with the breast screening.

I imagine you were shocked when the consultant said that to you, but equally it helps to put a cause your health problems in some way.  

I will also look into the charity you mentioned.

I'm also thinking of getting my medical records so that I can be knowledgable about the drugs I had.
Thanks again

Bx

p.s. Although we've not been tested, myself and my family/household have had COVID-19 virus and thankfully recovered. Was worried that my chest problems would really be an issue with this but, although it was really hard it wasn't bad enough to seek medical attention, again thankfully.