November 15, 2013 at 3:03 pm #848
Hi I am Dawn and I live in Kerry. In June 2012 I had a lower left lobectomy for what was diagnosed as a carcinoid tumour. Prior to surgery I had been having periodic CT scans, since a first CT scan, 2010 for lung problems revealed multiple bilateral nodules. The resected tumour had been noted as changing and growing hence the surgery. The carcinoid tumour was’typical’, the best type to have so I am informed and although the lobectomy was tough going I have thankfully made full recovery. Unfortunately my lungs problems continued to be most troublesome especially the awful cough and inflammation. Long story made short I recently had the please of being seen by Professor O’ Toole. It has been brought to my attention that I have in fact got a very rare lung disease, I believe my lung biopsy confirmed this. It is called DIPNECH which stands for Diffuse Idopathic Pulmonary neuroendocrine Cell Hyperplasia. The accompanying lung nodules now being termed tumour lets. I joined your wonderful group as I felt the diagnosis of lung carcinoid would qualify me to do so, however I now wonder as I am thinking the lung carcinoid I had removed may not be the same as the carcinoid your members have ?? sound confusing….well I most certainly am. I wonder if any member here has heard of DIPNECH. I have found some information and I have been placed into the care of Dr Derek Power. I do feel somewhat over whelmed by it all though and find strength in listening to others sharing their journey. As of yet I have not been informed of any possible treatments, I am aware it is a progressive slow growing disease and with it being so rare it can be a bit scary. I would love to hear back from anyone, and if I should not be posting in here please just let me know. many thanks DawnNovember 15, 2013 at 4:37 pm #849
It was a pleasure to have you and your sisters at the patient day last Saturday. You are a credit to your father. It was a great day and I think people went away more informed about our disease and what options are available. I have no experience of chemotherapy for NETs but hopefully others can give their experiences, as Jackie already has.
I hope that your Dad feels better and that he receives good advice on his treatment.
All the best,
MarkNovember 15, 2013 at 4:48 pm #850
There are many different types of neuroendocrine tumours, of which yours is one. Please continue to be a part of this community that we are trying to build and continue to post on the forum.
You are in great hands with your doctors. Prof O’Toole has been appointed as the National Lead for NETs Ireland and Dr Power is part of the NETs Centre of Excellence being established here. Both are excellent clinicians and are very empathetic and approachable.
I hope that someone with your form of disease or something similar can post with their experiences.
Good luck with your treatment.
All the best,
MarkNovember 15, 2013 at 7:09 pm #851
thank you for reply and it is nice to know I can stay. Yes both Prof O’Toole & Dr Power were very nice and I await further follow up.
I will keep you all informed of my experiences and I thank those of you who have already shared your stories. It does help, a lot, to have a patient forum like this. Our wonderful Dr’s have enough to do treating our condition, emotional support and some light heartedness too, during what can be scary times helps as well. I would especially like to hear from any member who has confirmed DIPNECH.
Thanks again Mark
DawnDecember 5, 2013 at 11:25 pm #858
Hi My name is Cliona. I was diagnosed in early October this year with a large mesenteric tumor 9cm in size. Luckily it was not attached to any organs and I had surgery to remove the tumor and part of the small bowel. I had several investigations to try and locate a primary. No primary has been found. Hence it looks like I do not require more treatment at the moment I go on a surveillance program I think? As I dont need Chemo, the oncologist doesnt seem to be the correct person to follow me up so from what I know an endocrine specialist is to follow my case. I have to meet with my doc again next week. I’m not sure if any of you have had a similar experience and follow up? Its all quiet new to me and Im still struggling to come to terms with all that has happened to me in 8 short weeks. Any tips on how to handle this ‘big stuff’ mentally is welcome! 🙂December 19, 2013 at 3:52 pm #863
I was diagnosed in 2000 and found nobody to talk to, as mine is not Carcinoid Syndrome family and friends found it difficult to understand just why I was bothered. My Doctor wanted to put me on anti-depressants which I definitely didn’t want but eventually I was sent to see a Therapist at Cavan Hospital and what a good thing that was. She didn’t tell me I was fine or lucky or anything like that. She just let me cry, yell and talk until I could finally cope..I would really recommend that as you can say hurtful things that you wouldn’t want to say to loved ones.
I have no primary but attend the Endocrine Clinic at St Vincents annually, it used to be Prof. O’Shea but in future will be Prof. O’Toole and I would suggest your Oncologist refers you there.
Best of luck in the future.
JoanDecember 21, 2013 at 2:34 pm #867
Thank you Joan, I have taken your advice! 🙂 Happy Christmas everyone! 🙂December 21, 2013 at 2:43 pm #868
It’s Joan again. Been thinking about you and your remark about the emotional side..one thing I would like to add is that reading about you has helped me enormously as I had thought that I was on my own, with no Primary and no C.Syndrome but still with emotional baggage. Intellectually I believed what I was told but emotionally it was a different matter and there was nobody the same as me, ‘low level cancer’ but not too serious so, as sorry as I am of your story, I am really pleased that you are there. Maybe if things get you down you would like to use me as your sounding bag..just maybe I will be able to help.
Best wishes for Christmas and the New Year
JoanDecember 22, 2013 at 2:34 am #869
Just thought I would let you know what’s going on here, pulled my back out , weak from chemo and back problems do not go together, I had not been upstairs for three weeks, back yard became the loo, kitchen sink my shower and the couch my bed, but of course my aunt copped on and a nurse bought in, within days I had a chair lift installed so normality back TG, then the nurse saw how sick I was and got palliative care in to look at me, I am on new anti sickness, new bowel meds, new pain meds and new stuff stopping reflux thing going on, and for first time in months I can say I am not sick, I am looking forward to Xmas, my kids home with me, oh and I also met with dr powers in cork, a great man who explained about my nets, and know I am not for any cure or treatment beyond chemo, and for what I went thru to how I feel now I will not be doing anymore chemos, this 6 was so hard on ones body, will take me months to recoup and knowing I won’t get much more help from chemo I will live my life as best I can, I am glad to get out of house over last few days, even in pouring rain myself and my dog go for it, I don’t feel sick so won’t act sick,, just look sick, but that to will pass with loads of fresh air, wishing ye all a merry Xmas , and thank you for being there in my confused time as I looked for help, ye are wonderful, helpful, thoughtful and compassionate, and have helped me more than any of ye know, I was so lost, so wanting some good news, but have had every question answered, thank youApril 1, 2014 at 12:40 am #964
well my cancer is back and i dont feel i can do another chemo, i am now under palliative care and know my cancer is 90 percent active and had oncologist from overseas tell me it would be back within a year, well i only finished my chemo in dec and back already, so dont think the sickness from chemo is worth it with my cancer, i am having surgery this week to make things more comfortable, and only bad thing about nets i have to say is i was never told or referred to a net specialist, i know its not the done thing with drs, but to hear of st vincents, to hear of all the specialists, and not to get to one, that is the most disheartening part of all my fight, will go with me to the grave, even if they only mentioned i was talked about, and their is a net specialist working out of hospital i was treated in that never knew of me, when i went to him for a 2nd opinion got all my records, met him in another hospital, was in my notes at next chemo and said to me,, that was inexcusable in my books, but those things go to the grave, i knew i had not much of a chance, as i did send my records overseas, and was told the truth, and honesty i needed, and was told here would shorten my life,, shorten to me was ten years so maybe make it to 60, now will be lucky to see 50, yep i am angry at some things some people, but guess they all do it by a book, as most people are told of life expectancy shortening, have met so many and so many same quotes from oncologists its funny sometimes how we can quote or even write a book for them,, but thats the irish way, i prefer the honest way, one can google in their chemo treatment and see outcomes in tests, maybe years ago they got away with their half answers, but dont think its quite fair anymore, well i googled today how long and maybe 5 months is my limit, will let ye know what the dr says lol, god bless google,, so thats my rant and rage done, so sorry but i have to say it,, if nets is such a rare cancer they should not be to busy to see us all,, or oncologists let people be aware their is a speciality place in ireland for this, cheers jackie, and i will never to able to thank you all for all your help; ye have been a blessingApril 1, 2014 at 8:42 pm #971
This is Carmel here, I’m one of the NET’s committee members. I was diagnosed in late 2007 with carcinoid syndrome and primary in the small bowel metastases to ovaries, womb, abdomen. Thankfully I had the good fortune after similar experiences to yours of being put in contact with Uppsala and then insisting the guys in Vincents (back in 2008) send me there for 2nd opinion. In spite of having had 3 surgeries I was completely stunned to find out the extent of the further metastases and that I needed surgery within 9 months otherwise I wouldn’t have the use of bladder or kidney function. No mention of that in Dublin. Before I got to Uppsala, I had to have emergency surgery and unfortunately had 3 ops in the same place in 10 days. So I was in a pitiful state 6 months later when I got on the plane to Sweden. Thankfully Uppsala did operate twice as it turned out and then pneumonia set in. What a battle it was to get there but I’m doing OK now so the fight was worth it. The truth is for alot of people with this disease it is a fight to get the expertise they need and the right treatment. In this climate good doctors with attention to detail who will take the time are indeed a rare breed. It shouldn’t be that way for any one. So please don’t apologise for in your words ‘rant’. Everything you said is heartfelt and true. Your story will resonate with many people, I know it certainly did with me. The more people spell this out and say it as it is, then we just might have a chance of trying to make things better for those who come behind us. Thanks for posting this. My thoughts and prayers go with you. If there is anything I can do for you please let me know. Again, thanks for your honesty and your courage. CarmelxApril 1, 2014 at 9:11 pm #972
Thanks Carmel, just a real rough day yesterday to hear it’s back so soon, but much better today , I go for surgery tomorrow as in a lot of pain and bleeding, so two weeks and I should be perfect again and strong enough to fight for longevity again, I will not go back to oncology as have no faith there at this time, just take my chances and live a fulfilled few months in quality , and advice for any oncologist watching this space be honest, I myself am black and white and don’t deal with grey areas, I needed answers not plamasing, so in midst of everything going on, having to get records send abroad to find out, that is nuts, please be honest it’s our lives our choices, I am on a tv show about all this in a few weeks, I so want to make a change, I could write a book on all the story’s lol,, but just sticking to my own, thanks again, hard for one to think they are leaving kids and family but maybe I can help others who have this battle ahead of them, and I am as honest on documentary as here lol,, so maybe we will get change, I have over 2000 following and want to get to the minister, to dr sand nurses, and just say listen to us, inform us and have cancer co ordinators if ye don’t have the time, and they will have our records and answer our questions, it’s in England, Australia USA loads of country’s we are lacking with cancer such a high rate here,April 2, 2014 at 11:54 am #973
I hope the surgery brings you relief from the pain and bleeding.
I agree with your comments. Seems to be an endemic problem with people not having the courage to admit they don’t know something, ask for input/advice or admit that they’re wrong. Integrity seems to be long gone. Unfortunately when it happens in the medical environment there are frequently tragic consequences for the patients and no one held to account.
Communication and common sense are worryingly absent in many cases. A long time ago, the person who pointed me in the direction of Sweden told me that everyone had to be their own warrior. I hadn’t a clue what he meant at the time but I wasn’t long in learning. The fight for what you know are the most basic medical requirements has to be seen and experienced to be believed. So, Jackie tell your story. The reason I joined this committee was to try and make a difference for others as well as be my own warrior. That’s what you are doing.
If you could tell us about the TV documentary and when it will be on, that would be great.
In the meantime, I know you have the thoughts and prayers of all on this site so everything crossed that your surgery goes well and you get that well deserved respite. CarmelxxApril 10, 2014 at 10:36 pm #977
My name is Chris and I had a carcinoid tumour removed from my ileum in 2009.
It was detected during investigations following my kidney transplantation.
My liver has been treated with trans-arterial chemo-embolization (TACE) and
I am on 28-day Sandostatin LAR 30.
In 2005 I developed end stage kidney failure as a result of surgery to remove an oncocytoma
and was on dialysis for 18 months. I have an interest in behavioural medicine.May 13, 2014 at 10:34 pm #983
My name is Garry and I have Carcinoid Cancer of the Liver. My cancer was diagnosed in 2000 in the S.I. After emergency surgery it was discovered that I had secondaries in the Liver . In Novermber 2000, I had a Liver section with my Spleen and GB also removed. Scans over the years were clear but I was shocked in October to be told that it was back in my Liver.
Currently having treatment, scans and follow-up
You must be logged in to reply to this topic.