That Dirty C word!

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This topic contains 9 replies, has 4 voices, and was last updated by  Saoirse 1 week, 6 days ago.

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  • #54263

    Saoirse
    Participant

    C for Carcinoid
    Well 2016 for me was when my appendix burst to reveal a stage 2 2cm tumor inside , leading to a right hemicolectomy
    the complete removal of the right side of the bowel and aprox 25 lymph nodes i was told, goblet cells were present,what made it hard was one doc said it was cancer another said it wasn’t, i rushed ahead under pressure and had the right hemi, no one even advised me that dietary changes may be needed, i couldn’t even get two answers the same so confused until now, almost a year on, but heres my dilemma…
    i still have pain, in my left upper quadrant under the ribs and low down on right side where the op was done also, alongside urgency and diahorrea the hospital i am attending has a terrible reputation the care i was given was scared first time round doc refuses my request to see a specialist in London, no one has mentioned octreotide or any follow up I’m only being scanned tomorrow due to my persistent symptoms i know how inadequate these can be at detecting tiny tumors
    Im not scared of Cancer Im scared of bad health care and lack of knowledge if they don’t pick up the cause of my problems tomorrow am i doomed to another incorrect diagnosis of IBS
    Please Advise

    #54279

    Nikie Jervis
    Keymaster

    Saoirse – here are our information sheets for appendices NET & Goblet Cell : given your history we would strongly recommend specialist follow up.
    GCC :https://www.netpatientfoundation.org/wp-content/uploads/020-NPF-GOBLET-CELL-CARCINOMA-v6.pdf nb this is being updated.
    Eating after surgery :https://www.netpatientfoundation.org/wp-content/uploads/guide-to-eating-after-surgery-grab.pdf
    Appendiceal NET :https://www.netpatientfoundation.org/wp-content/uploads/Appendix-excluding-Goblet-Cell-carcinoma.pdf
    You may find this information helpful – especially for symptom management – You could also print this information off and take with you to your doctor. You don’t say where you are – we don’t need to know the hospital name – but there are 10 Centres of Excellence within England as well as expert clinics across the UK . . .it may well be there is care nearer home than London (depending on where you live). http://www.ukinets.org/net-clinics-research/ is a link to UKINETs – the medical society for NETs – this link should take you to their list of clinics/hospitals.
    I hope that you are able to get the support and care you require
    Take care
    Nikie

    #54289

    Saoirse
    Participant

    I live in Buckinghamshire I was operated on in Berkshire I’ve asked doc to see a specialist in London as I had read that that’s where they specialized nearest me but when I asked she just laughed and said I quote “I’m sure all patients would love to go to London for treatment if they could choose” so what do I do? It’s been a year since they found it I had the hemi last June I’m in pain still they gave me a second ct no octreotide, no dietician, no follow ups this ct only happened because I presented again with weight loss palpitations dioreha and pain… I’ve only ever seen one bowel surgeon no one else no oncologist nothing?

    #54290

    Saoirse
    Participant

    Dear Nikki Jervis thank you so much for your invaluable booklet which I’m pouring over now xxx

    #54298

    jennyl
    Participant

    Welcome to the forum Saoirse and sorry to hear of all your trouble. As I understand it, everyone is entitled to a second opinion which is what we did and I know that several patients on here have done that. If your hospital isn’t a Net Centre and won’t do a referral to one, then you can ask your GP. It’s my husband who has Nets and we went for a second opinion as it was clear at the time that he was not being given the correct treatment at his local hospital. I just insisted (nicely) that we have a referral for a second opinion. We only went the once but at least we had the backup should we have needed it. As Nikie has already suggested, look at the various Net Centres listed and choose one nearest to you – it doesn’t have to be London as all Net Centres usually follow the same procedures.

    I hope you can get sorted soon and perhaps you will let us know how you get on.

    Jenny

    #54303

    Nikie Jervis
    Keymaster

    Gov.uk – patients rights re healthcare incl services of Moniter. As Jenny has said – if this wasn’t your GP – then ask your GP. If it was and your hospital team will not help – check out your rights on gov.uk – also how Moniter can help.

    #54304

    dabber
    Participant

    Hello Saoirse, so sorry, I have only just seen your posting, but hopefully you can get something sorted now. It makes me a little sad sometimes, and I am glad you have shared your experiences with our forum. I am one of the patients who asked for a referral, I was being looked after by a hospital, that wasn’t a net centre, but they were excellent in my care and surgery I had there, my treatment was super, and I was very well looked after and my oncologist did work with a net centre.
    However, after talking with others, I realised that I needed to be referred to a specialist net centre, and this was done very quickly, very kindly, and I was not made to feel guilty at all. They added, that even though I was going to the net centre, I was very welcome to go back there for any treatments I may need. In fact, when I had my first appointment, the consultant actually shared some of the referral letter with me, because it said many kind things, I was very well blest it seems, made to feel special, which is something we should feel, you are special. I hope you will let us know how you get on, lovely to chat to you, Carole.

    #54419

    Saoirse
    Participant

    Hi guys, your replies and links had given me hope but guess what… I had the ct without mention of octreotide on 11th April and its now the 5th of May have rang doc twice asked for results they rang back said call direct line at the colorectal team I did so this morning and was told there was no report there! I have been wandering around eating painkillers like theres no tomorrow I don’t know what to tell my dependents I have no other family no support no control over my symptoms i just feel like I’ve had parts of my body snatched tested and being ignored its the helplessness the powerlessness of not knowing how can this be right I am so sorry for complaining but I have been quiet and patient throughout a year on Im supposed to be “cured” and theres this..no choices no answers no nothing, am running out of sanity and dignity
    Answer me this : Why make me wait until the 16th of may in person? I’ve had good results over phone? It doesn’t take a month for a ct scan result in uk?
    Torture

    #54446

    jennyl
    Participant

    Hi Saoirse,

    There’s always a waiting game with these tests and you’re right it doesn’t take a month for a ct scan result. However, our local hospital have never given us results over the phone for anything so you may well need to wait just that little bit until the 16th of May, it’s only another 10 days. The waiting is difficult for everyone. My husband, along with most patients on here, have to wait around 2 months to get results at the appointment because a CgA blood test takes around 5 to 6 weeks to come back, then there is the 24hr urine test and then results of scans. Patience is something that we all have to learn to cope with and it is difficult. Dave is going for his results next week but we started his testing back at the beginning of April and it’s been an anxious time. Dave has never had any of his scans with Octreotide but they found his tumours easily without.

    Did you have to change hospitals by the way as was recommended if you were not already attending a Net Centre? Not that the waiting would have been any different of course. Also remember that generally Nets are slow growing tumours so to wait a few weeks is not going to make any difference to the outcome of treatments.

    Meanwhile, try to calm yourself down and think positively, again that can be difficult to do and I’m dreading next week so I don’t always take my own advice!

    Keep in touch and let us know how you get on.

    Jenny

    • This reply was modified 2 weeks, 3 days ago by  jennyl.
    #54502

    Saoirse
    Participant

    Hi there Jenny
    Thank you for your most sensible advice. I have since been unwell and admitted to hospital again, I have moved area and registered with a new doc. These Tumors are slow growing and it’s not that that scared me it’s the powerlessness and lack of choice lack of knowledge amongst professionals (some) in healthcare sector that scared me, I am resigned to fact that I’ve got to wait and that’s fine, I’m not scared any more please god the new hospital will follow me up and f they do I will feel like I’m in good hands, thank you for taking the time to reply , I do wish you and your partner the best of luck in these tedious times
    Many thanks again
    Xxx

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