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Oddone
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My daughter who is 19 has recently been diagnosed with Neuroendocrine Tumours. This is a very rare form of cancer and is almost unheard of in anyone her age. We have been told that it has spread and therfore palliative care is the only option in regards to treatment. There is no previous evidence as to what to expect next or in the future and i feel lost. I have looked on other forums and not found anything useful. I have amazing friends and family who have been really supportive but we are still waiting on tests to see where it began either the bowel or pancreas as to what is the best form of treatment. we have been told to just take things one day/step at a time which i understand but i feel like i am in limbo unable to make any plans or anything. i have 2 other children aged 14 and 4 aswell so it is just so difficult trying to carry on while everything has been put on hold. I dont know  when or if things will ever go back to normal. As this is such an unsual thing even the hospital staff cant really advise us so i just feel so confused.

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    Hi Oddone,i too am in a similiar situation as yourself,my son has been diagnosed with CUP am typing while at his bedside,i am going through all the emotions you are im numb lost and in disbelief what is happening,there is no cure but am desperatley looking for anything that can help his condition he too is 19 years old.was also told to take each day as it comes,but it is very hard as a mum i want to protect him but this is something that has been taken out of my hands :(..I have 2 older children and yes it is hard to focus on ANYTHING as i can only describe it its like you think of something then BAM your back to the reality.I am trying my best to hope that things will get back to normal but for me i dont think it is an option...My son is also under the pallative nurses and just hearing that is a dark cloud that will never be lifted...i do hope that you can find answers as like you am walking the same path x
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    my husband has this they think his started in his bowel spread to pancreas then liver unoperable ,their is a clinical trail undergoing at middlesbourgh hospital search clinical trials for pancreatic cancer hope this helps xxx

     

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    Hi Oddone, My husband has neuroendocrine cancer in his Pancreas with spread to the liver. Whilst I can't begin to know how it must feel to hear your daughter has this, I do understand the panic you go into when you first hear the diagnosis of someone you love. Have you been in touch with the NETS foundation? This is who we were advised to contact for advice and support. Also, make sure your daughter is referred to a nets specialist unit. My husband was first diagnosed December 2015, he has monthly injections and although does get tired, he works full time. His last scan showed disease stable, review in 6 months. There is a NETS conference at the Queen Elizabeth Hospital Birmingham, in May, you need to book a place if you wish to go, it may help to answer some questions. Best wishes for the future to you and your family.
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    Hi again, 

    I have just found ( on the Nets foundation site) a suggested site on Face book for young people with Nets ...... net whippersnappers. 

    Thought your daughter might find this helpful.

    Denise

     

  • Offline in reply to Doness

    Doness, thank you for taking the time to reply i am sorry to hear about your situation, i dont really have any words that will be of use to you and please dont think i am being careless by not offering you words of sympathy etc. i am sure you are probably sick of hearing them at this point. I know i am not becuse i dont apreciate it but i personally dont find it helpful maybe im just an ungrateful cow but im not at the stage yet where i can take these things in properly, if that makes sense. The only thing i can say is please feel free to message me if you want a chat or rant etc. if it helps i am more than happy to be at the other side of the internet. I know you have probably got endless offers for that in person i certainly have, but i feel better actually talking to someone who doesnt know me and i dont feel like i have to put on a certain persona towards (again i hope i make sense and you understand what i mean). Please dont feel you have to, but just be awar if you want to i am happy to, if happy can be used in this situation, i dont even know what words are appropriate anymore it really does send you crazy doesnt it, take care and thank you again x

  • Offline in reply to denise01

    Denise

    Thank you i will let her know about this,

  • Offline in reply to denise01

    Denise

    thank you this is really helpful information we were told about the NETS foundation but advised it maynot be that helpful as it is aimed at people who are older than her, but we will certainly take a look now, we are under a consultant who is very good and has advised that it may be necessary for her to go to london for treatment. Of course this is what we will do if that offers the best possibility it is just the travel will be a stuggle i know this sounds selfish but i have to arrange childcare etc. sorry if i am ranting its all just so frustrating still. Thank you though this shows that with treatment there is a possibility of some quality of life and it is not an immediate death sentence as we first thought when we were given the initial diagnosis of cancer that has spread so widely. Thanks again for replying x

  • Offline in reply to debeny

    Thank you i will  look into this and mention it to her consultant x

  • Offline in reply to Oddone
    Hi again, If you get referred to the Royal free in London, embrace it, their unit is one of the best in the country , if not Europe, you will be well looked after. Take everyone's offer of help, that was one of the first decisions I made, don't try to 'just manage' If your daughter does have the monthly injections, these can be done at your own GP's, you can even be trained to administer them y'self if you wish. You won't need to go to London each time. Make sure you look after y'self too, you are going to be drawn in several directions. A 1 hr coffee break with a friend recharges your batteries, you can go a long way on an hour recharge! Xxx
  • Offline in reply to denise01

    Hi Denise,

    Thank you so much your advice and information it has been so helpful, it is more than we have been able to find or been given even by the hospital staff, i know they are atill learning themselves as we keep being told that they havent come across a case like this before. But knowing these things certainly sheds light on things and makes things seem a tiny bit easier if that makes sense. xx

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