Life after childhood cancer – long term support and follow up (UCLH web chat) 

UCLH and Great Ormond Street Hospital work as a unified centre and together make up Europe’s largest centre for the treatment of childhood and adolescent cancers. The long-term follow-up service at UCLH is now the main referral centre for adult survivors of childhood cancer treated at Great Ormond Street Hospital, University College Hospital and The Royal Marsden Hospital.

UCLH will also host one of only two NHS high energy proton beam therapy centres due to open in 2020.
As survival after childhood and adolescent cancer improves the focus moves from intensifying treatment to reducing long term effects. Not all treatments are associated with significant late effects but it is currently national guidance to follow up all childhood cancer survivors long term. According to the British Childhood Cancer Survivor Study 66% of adult survivors of childhood cancer suffer from at least one treatment related adverse effect. Late effects can occur many years after treatment is finished and are dependent on the drugs and modalities of treatment used.

Our specialist multidisciplinary team provides long term follow up and advice to survivors of childhood and adolescent cancer after their cancer treatment has finished. Transition from Great Ormond Street Hospital and The Royal Marsden Hospital occurs at around the age of 17/18years. The focus of the UCLH service includes surveillance and treatment of late effects, lifestyle advice and prevention of late effects as well as emotional and psychological support.

Our experts, Susan Mehta, lead clinical nurse specialist and Dr Victoria Grandage, Adolescent Haematologist with an interest in Late Effects lead the late effects multidisciplinary team.

The conversation will focus on physical and emotional health issues that can arise a few years after treatment has finished. We will be able to answer questions about the issues that may be experienced following treatment for childhood cancer and how patients may be supported to deal with them.

To put your questions to Victoria and Susan, simply visit this page on 29 September at 1pm. Alternatively, post your questions in advance to and we will endeavour to answer them on the day. You can set your web chat email reminder in the box below.

12:23 UCLH: 
Good afternoon and welcome to our web chat.

We will begin at 13:00 (1pm), but you can submit your questions now in preparation for the chat. Please note: your questions will not appear in the main chat window until after 13:00 (1pm)

Our experts, Susan Mehta, lead clinical nurse specialist and Dr Victoria Grandage, Adolescent Haematologist with an interest in Late Effects lead the late effects multidisciplinary team.

They will be able to answer questions about the issues that may be experienced following treatment for childhood cancer and how patients may be supported to deal with them.
1:05 Susan and Victoria: 
Hello from Susan Mehta and Dr Victoria Grandage, our experts today.

We are looking forward to answering your questions about the late effects of childhood cancer. We anticipate that many of you will already be attending a late effects service. This is the national recommendation for childhood cancer survivors.
1:06 [Comment From Louise: ] 
Hello, My daughter had Retinoblastoma aged 18 months which responded to chemo. She is now 13 years old and healthy. She still seems to be more tired than her siblings and we have been told she will need to tread carefully with her liver when she is older. Are these normal effects from chemo amd are there any other long term symtons I should be aware of? She has also not started her periods yet. At what point should this concern me?
1:07 Susan and Victoria: 
Thank you Louise

This is a very good question and treatment for childhood cancer can sometimes cause late effects even many years later.
The national recommendation is that all childhood survivors of cancer are followed up long term.

There are many different chemotherapy, surgical and radiotherapy treatments for retinoblastoma and the effects depend on the specific treatment and chemotherapy drugs your daughter received.

The liver can be affected by some treatments, but we would need to know exactly which chemotherapy your daughter received. However it is unlikely your daughter will have a problem with her liver all these years later unless there was a problem at the end of treatment.

Some chemotherapy can cause a problems with the hormones and puberty, but it is not likely after treatment for retinoblastoma. If you are worried about your daughter, she should probably have an assessment by a doctor just to check she is beginning to show signs of puberty. The normal age for starting periods is between 10 years and 15 yrs. As she is 13 years old, she is still well within the normal range.

Some young people do complain of fatigue even many years after chemotherapy and it is difficult to know whether it is always an effect of childhood cancer treatment. Teenagers and young adults do generally need a lot more sleep than adults. If her fatigue is significant and stopping her doing things, it is a good idea to rule out any medical reasons for it. There are a lot of support services for fatigue and your GP can direct you to the local service.
1:07 [Comment From Anonymous: ] 
13. Hi, I was diagnosed with a Wilms tumour in 1987 and have been clear since 1989. I suffer from back pain and I can’t seem to put weight. Is this normal? Also I found out several years ago that the radiotherapy left me infertile is this normal also. Thanks for your help
1:07 Susan and Victoria: 
Thanks for your question. It sounds as though you had intensive treatment for your Wilms Tumour and without the exact details of your treatment we can only answer your questions generally.

The predicted late effects of a given treatment very much depend on the chemotherapy drugs used and the dose, together with the area of the body treated with radiotherapy and the dose.

Commonly with Wilms Tumour, the muscles on the side treated with radiotherapy area do not grow normally and this can cause bending of the spine (scoliosis). This in itself can cause back pain.

From a fertility point of view, if the ovaries were in the field of radiotherapy, this would certainly affect the ovarian function on that side. However, women are often fertile with one ovary. Chemotherapy can also affect fertility. But more usually, this leads to an early menopause, rather than absolute infertility. If this is something you want to explore further, we would suggest speaking to a fertility expert.
1:20 [Comment From Jane: ] 
Hello, My eldest son had cancer when he was two. He is now 8 and we have had two more children. They don’t really know what happened but know that their brother has some extra health issues. How much should we tell them about what happened without making them worry?
1:21 Susan and Victoria: 
Thank you for your question – this is a really important issue for some families. We know that when a child has cancer, the siblings in the family are often affected and sometimes need additional emotional support.

From our experience, talking to adults who survived childhood cancer, they seem to cope better psychologically when parents and healthcare professions have been open and honest with them from the start. This should continue as your child gets older as he won’t necessarily remember his experience.

It is also important that this openness includes the siblings who will be aware that your son is still attending hospital appointments and might want to know why.

We don’t know what age your children are, but if they ask questions, it is always best to answer honestly at an appropriate level of understanding. There are written resources for siblings of childhood cancer survivors that might help. You can ask your health care professionals to provide these for you.
1:27 [Comment From Guest: ] 
My son was diagnosed with osteosarcoma in Sept 2014 . He had an amputation above knee left leg Jan 2015 and completed chemo in Oct 2015 He also had mifamitide until early Jan 2016 . Although all scans and X-rays have been clear , his weight has continued to drop. He has a mickey button for booster feeds and still no prosthetic due to the fact the first starter prosthetic dropped off , he walked out of due to weight loss. He continues to not eat breakfast due to mucas every morning , that clears by about 10pm but this is too late for breakfast when he attends college. He struggles with apetite as he feels full after a small amount of food. Is this normal. The prosthetic provided by the NHS originally is o.k. As a street but we were told our seventeen year old son will never run again.
1:28 Susan and Victoria: 
Thank you for your question – it is clear from what you have said that your son is having a difficult time of things.

As he is still so close to treatment, it is important that you contact the treating doctors and ask them your questions. They are in a better position to answer them than we are.

We lead the late effects service and patients are usually referred to us five years after treatment has been completed.

1:36 [Comment From Anonymous: ] 
Hello I was wondering, given that late effects it seems can present many years after treatment? Can they continue to emerge? This question is maybe to open ended. I have heart damage from my treatment. Is it possible I may develop further late effects?
1:37 Susan and Victoria: 
Thank you for your question.

The research tells us even many years after treatment has completed late effects can emerge. Your predicted late effects will very much depend on the treatment you received. You may have already received a treatment summary and care plan. This will detail the treatment you received and your possible late effects, as well as any monitoring necessary. If you haven’t received this, it might be worth asking your clinical team for more information.

With regards to your heart damage, we would recommend that this is followed up either by a heart specialist, or a late effects team. We can’t be more specific than this, as we don’t know the details of your treatment, or the degree of heart damage. Hope this helps.
1:44 [Comment From Anonymous: ] 
I had Retinoblastoma and am worried about having children – what can I do?
1:45 Susan and Victoria: 
Thank you for your question. Clearly there are several aspects to this question and without knowing the treatment you received, we can’t be specific.

However, retinoblastoma can be hereditary in some cases and your treating consultant should be able to discuss with you whether your children may be at risk. When you were diagnosed, your genetic mutation (the genetic abnormality that caused the retinoblastoma) will have been identified.

With regard to fertility, this depends on the stage of disease when it was diagnosed and the intensity of treatment received. Your treating team should be able to advise you about this.
1:46 [Comment From Guest: ] 
We have not been referred to a late effect service . Our son attended Alder Hey and two years almost to the day of diagnosis ( Osteosarcoma )
1:47 Susan and Victoria: 
Thanks for getting touch.

Usually referral into late effects service occurs five years from end of treatment. However with osteosarcoma, it is not uncommon for patients to stay under the care of their acute team for longer.
1:53 [Comment From zahra: ] 
I am a parent and my child had thalamic astrocytoma when he was 12. How do I make sure he knows what to look out for, without making him really worried about his health?
1:53 UCLH: 
Thanks for the question – this highlights the importance of preparing young people who have had childhood cancer for adult life.

This is a big transition point and it is really important your son has the opportunity to discuss his treatment and risk for late effects with his medical team. This should include advice on health eating, exercise, how to be self-aware and to access help when needed. This should be given to him at a level that he understands.

Here at UCLH we have developed specific nurse-led transition clinics for young people moving to adult care and we discuss these types of issues at those appointments.
1:54 [Comment From Anonymous: ] 
Hello this is great thank you, I am under a cardiac team for the heart issues, I have a treatment summary, in a way I suppose I just wondered If I / we might develop or encounter further late effects? Is there any evidence for instance to suggest if somebody develops a late effect if they are more predisposed to developing others?
1:56 UCLH: 
Thanks for replying. The development of one late effect does not necessarily mean you are at risk of other late effects. But we know that with some intense treatments, it is not uncommon to develop more than one problem. It very much depends what treatment you received.
2:02 [Comment From Anonymous: ] 
Sorry for some reason I couldn't complete in one box. As an adult I have always suffered gastric problems (abdominal pain nausea) those kind of issues I now wonder if they could be because of chemo. I also wonder given the scale of the issue is or are there plans to raise awareness with GP 's etc my experience suggests they are generally unaware of the subject. Finally I would like to thank you for running this hour
2:02 Susan and Victoria: 
Thanks for your question.
From a treatment point of view, the gastric problems could be related to your treatment, depending on what drugs you received.

You make a very good point about GP awareness and this is certainly on our radar. The problem being that a single GP may have only one child hood cancer survivor on his records and it is difficult for them to gain expertise in this area. We are trying to provide all our patients with treatment summaries and care plans to share with their GPs to help make sure they are aware of the predicted late effects for individual patients. This can also empower patients to get the appropriate advice.
2:04 Susan and Victoria: 
Thank you for all your questions - afraid we are now out of time now - hope you found the chat useful.
2:07 Susan and Victoria: 
We would like to reiterate our starting message to everyone that if you are five years following the end of treatment for childhood cancer, you should be in a late effects service where these questions can be answered. UCLH provides care for young people and adults in the London area. There are other services throughout the UK. Thanks again for all your questions and sorry we could not answer them all.
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