neuroendocrine tumour in the small bowel

[candle76]

hi I'm Karen had a operation 21st dec 2016 to remove a grade 1 tumour in small bowel had 2 cancerous lymph nodes removed being reffered to royal free anyone else offer any support I'm shocked scared and don't know what to do for my future ?

[Jennymary]

Hi Karen, not able to offer advice on bowel cancer, i had breast cancer, but I can send loads of love and hugs your way for a smoothish journey, put any questions here or possibly browse HU communities to see if there's a bowel cancer one, stay strong xxxx

[candle76 in reply to Jennymary]

Thank you very much wishing you well prayers & hugs have found it hard I must admit waiting on royal free appointment have loads of questions feel I'm in limbo at the moment not sure how you felt ? thank you for your reply

[Robinet]

Hi Karen, I had the same operation in September, also a grade 1 Neuroendocrine tumour in my small bowel which had spread to two lymph nodes. I am at a NET centre of excellence which the Royal Free also is I believe so you are going to the best place. At the moment I need no more treatment but am on 6 monthly scans to check for recurrence. In Dec I had baseline scans done CT and MRI, I also had several scans prior to my surgery including a Gallium PET/CT. The NET patient foundation has lots of information leaflets and a forum for NETs or Neuroendocrine tumours if you look online netpatientfoundation.org

Good luck

Clare

[candle76 in reply to Robinet]

wow Clare that's brilliant news yer ive been on the net website I speak to Nikki their specialist nurse & Macmillon website not much known about these tumours my GP hadn't heard of this,waiting on referral to a daycare center hospice in st albans where I live to offer support found it hard to process the information and be positive seriously need to get help with this how did you cope???

[candle76 in reply to Robinet]

hi how are things going for you at the moment ive had my appoint for the hospice here in st albans went well said the thoughts I'm having are fear? and I start classes with them from feb ..........

[Jennymary]

Hi Karen, I had a ten day gap between my biopsies and diagnosis and during that time I reconciled that yes i had breast cancer, felt quite numb and would have been more shocked if I had been told at the hospital that I didn't have cancer, my advice would be take a friend with you to listen in, keep a note pad and pen handy at home, write down any and all questions no matter how silly to you they may seem, take it to your appointment ask your questions and write down the answers, I expect you'll be given contact details of a specialist nurse you can contact, if you're not, ask for details on who to contact with any issues you get, when you go the Royal Free what sort of appt are you expecting, is it too discuss chemo and or radio or don't you know yet, xxxxx

[candle76]

not sure my specialist nurse said the royal free specialist may want to offer some treatment or may decide to just monitor me with scans ? they wasn't sure what they might do got my appointment tomorrow at the local hospice here in st albans to join their day care center & for support from them also yes ive found with information its going over my head I try to make sure I have someone with me the questions ive asked they carnt say yes or no to them but I hope the royal free might be able too I to had biopsys done of my small bowel I hope you have support too thank you for replying

[picklescat]

Hi Karen,I wasn't a member until I read your post and signed in to say being frightened is totally NORMAL my friend.I have what' called a 'life limiting' autoimmune illness myself that took an unbelievable 14yrs to diagnose and I was only in my early 20's when it started.I went to hell and back and everything in life marriage,job ,friends because non of them could cope .If you can and I'm not being glib try and be kind to yourself and realise what an incredibly strong woman yo are.One method I find that massively helps that out of control feeling of feeling frightened is to do 'guided meditation' ,if you go to You Tube there are some great ones for deep sleep etc ,all of these things is another tool for getting on the next rung of the ladder and you WILL be OK.As I said I signed up because your post touched me ,can relate to it totally.Sending you a big hug and if you ever need anyone to just listen ,well I'm around.You are strong Karen ,please know it..keepgoing girl .Sophie Wilde xxx

[candle76]

hi Sophie thank you very much for your reply I'm feeling a little lost trying to be strong for my family as its hard for them seeing you in well,went to a hospice Friday 13th jan they said the same as you have be kind to your self I'm going to doing yoga with them come feb yes meditation sounds good need to distract my self, yes life is the next rung of the ladder would like to send you a big hug to as its not been easy for you, you also a very strong lady Sophie & I feel for you,i may feel more settled once ive been to the royal free depends what they choose to do? but I'm determind to hold my head up & stop being scared hospice said its normal getting councilling as well so this helps stay in touch Sophie lovely to hear from you

[jeanjames]

Hi Karen

allow yourself to be scared but also try to remain positive. I has bowel cancer threes years ago. Now left with much smaller bowel. But I'm fine. And look to the future with hope in your heart.

Love and healing thoughts coming your way. Stay in touch

Jean xxx

[candle76 in reply to jeanjames]

thank you Jean yes things been a bit scary as they must be for many just cant get my head round things guessing you felt the same I'm attending classes soon at the local hospice here in st albans until my app comes from royal free hampstead you must of had follow ups too? thank you

[Shellvet]

Hi Karen , my mum has just had her lymph nodes removed and part of her colon after finding cancer . I know it's a horrible time . Please try and not worry to much . The doctors and nurses are very good in these units . They work fast and any worries are explained to you till you understand. My thoughts and best wishes are being sent to you . Good luck Karen .

Michelle

[candle76 in reply to Shellvet]

thank for replying just such a worrying time care been brilliant mostly they cant answer my questions but with me its part fear part the unknown & I need to get a grip hope your mum is doing well my surgery wemt ahead on 21st dec 2016 so still recovering