That Dirty C word!

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This topic contains 17 replies, has 4 voices, and was last updated by  Saoirse 2 weeks, 5 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 1 month, 3 weeks 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

    #54607

    Saoirse
    Participant

    Hi there I really want to update you guys as Its your great advice and support that has helped me through this guess what? As you know the background with my tumor, its removal, the right hemi, and then the return of my symptoms after my docs refusal to see specialist i changed doctors and moved, well I’ve since been sick and in hospital released again and returned as an outpatient at a London Hospital, well thank God!
    Theres good and bad news but Im elated still, because now I know I was right. The new Doc says that this screams of neuro endocrine and that she will send me for another ct this time using Octreotide which should have been used in the first place at the hospital where I was my symptoms started 2 years ago, also on being released I was told my bloods were all perfect I says so how could I be sick? Well basically, they have been doing all the wrong tests! Thank God for a doctor that knows what she’s doing I feel safe now….. will keep you updated and thanks…at last

    #54608

    dabber
    Participant

    Hello again Saoirse, so glad you seem so positive now, and I am assumig the hospital in London does have a net clinic, so glad you feel safe now, and do not ever feel alone,, there is usually one of us on here, inbetween our hospital appointments, scans etc. but the good thing is, we are still here, and enjoying this gorgeous weather, let us know how you go on, so, yes, please, updates!! take care, Carole.

    #54631

    Saoirse
    Participant

    It;s been a long haul, 3 years of pains and other weird symptom, last year the 2cm carcinoid at the base and the right hemi, recovery and then the recurrence of symptoms, Today finally I go to Kings and yes they have an NET clinic thank god, I know Im lucky and Im in the right place I should be happy but am not, Im in pain, and have been fasting two days to prepare for todays colonoscopy? Why all this bother I think? I mean I don’t have colon cancer? My problem in in the abdomen? I have little faith in these types of tests,they found nothing last time? However that was at the old hospital whom i won’t mention but are notorious for their failings… its all over the internet was a scandal, quite worrying i let them do that op? and I can’t believe that they have been doing all the wrong tests?
    When I am well, well, when this is over I should say, I will raise awareness and money for this cause not just because I have this condition but because my granddaughter was born with all these strange lumps in her neck also….some have been removed no ones said what they are and she has more….
    But whats worse is that you feel isolated enough for having such a strange disease, so when the old doctors such as the the GP i sacked know and say so little it leaves you feeling like you are mad like its all in your imagination, meanwhile slow grower or not, time is ticking for us patients…. enough is enough you will see and hear more of me re this condition …
    I won’t get mad Il get even, i will raise money i will post info on my Facebook twitter start a cause something
    Excuse my rant but I’m starving waiting to go in for this colonoscopy whats more Im alone because i didn’t know what to tell my family, and well I guess this is my anonymous moaning and update hotspot for now, until I write my book.
    Stay strong, I will be back x

    #54632

    Saoirse
    Participant

    MEN1 gene? given my family history i think there is something in this!

    #54634

    jennyl
    Participant

    Hi Saoirse

    I hope today’s colonoscopy went well today and I know you have asked why you might be having this since your problems seem to be in your abdomen. My husband Dave was diagnosed from a colonoscopy because he was anaemic, had lost weight, was flushing and had diarrohea. They found 5 polyps which were removed (non-cancerous) but they also found his Net in the ileum (small bowel). So the test was well worth the discomfort and anxiety it caused because from that we found out what had been wrong for probably around 8 years when he first had extremely high blood pressure which increased with every medication they tried.

    It’s good to see that the hospital is an excellent Net Centre and they are obviously being very thorough. You know you are not alone with this disease, it’s treatable with a good long term outlook for many patients so you must keep positive. I would also strongly recommend that you tell your family why you are having tests if you haven’t already done so. You will gain their support I’m sure.

    Let us know when you get your results, which possibly will be the first of many test results that you will get over a period of time. Stay strong.

    Regards to all
    Jenny

    #54636

    Saoirse
    Participant

    Well basically they found few polyps one was 3cm so was worth the colonoscopy however was worrying that he wouldn’t remove or biopsy it I don’t know what to think I’m still in shock, they did this prob because i had pain and rectal bleeding. Octreotide next week, thanks for asking Jenny x

    #54666

    jennyl
    Participant

    Hi Saoirse

    They normally remove any polyps at the time of the colonoscopy but you may not have been aware of it being done. You will find out at your next appointment. Dave was told at the time about his polyps but each hospital is different. Once all your tests have been completed, then you will be in a better position to know what might be going on. Meanwhile, keep positive.

    Jenny

    #54698

    Saoirse
    Participant

    Hi there
    in response to your last message Jenny they definitely did not take any biopsy or polyp out at the time, today i had my first octreotide scan long long awaited they told me nothing but i saw some! Also had a call back re a surgical operation in my sigmoid? No discussion no explanation nothing just your booked! Efficient yes, however, a conversation or explanation would be lovely! I don’t necessarily want more surgery? I mean do I have to and why? Are all patients in the dark with this disease or just me?

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