Neuroendocrine carcinoma

hi my name is andy and i am 45.i have just had my pancreas removed because of a large cycst 1 month ago .the cycst i am now told was cancer in the form of neuroendocrin ,i am now going for more scans at oxford to see if it is anywhere else a bit of a shock as it was only monday .

Hi Andy, I'm so sorry to read of your diagnosis. If I can be of any help at all by telling you our story, then please don't hesitate to ask.
My very best wishes.

Not my 1st visit, but now I have finally decided to register.
I am really sorry to hear about you husband, you are all in my prayers.

I was diagnosed last April 2007 aged 35 with an aggressive Neuroendocrine Lung cancer with small cell features. I was given chemo mix of Carboplatin and Etoposide, but I only 4 sessions before they stopped it. As the cancer was continuing to grow. At which point I had about 2 weeks of palliative radiotherapy, which has shrunk the tumour a little and eased the symptoms (thank you Jesus). I also had an Octretide scan and a Depreotide scan test, to see if Radionuclide Targeted Therapy treatment may work for me. But the tests showed low uptake so that also hit a dead end. The doctors say that they have tried, but have failed to cure me, so I am also terminal. The doctors have 1 remaining chemo course for me but its only palliative and not designed to cure me. Which they are planning to give me (I assume) when the going get tough.

Its in God hands now, he has kept me so far. Many do not last this long, I know it is difficult but hang in there.

I also want firstly to say hallo to fraggles: I think about you a lot and how you must be feeling. Mangoandy: that's not the best news about your diagnosis. You must be a state of shock. You look such a lovely friendly person, and I'm so sorry. I hope that you will find lots of support on this site. There is a chat room, and, despite everything, we sometimes even laugh there (probably proving we are mad but it does help - the laughter with others in same boat, I mean, not being mad!). I will try to catch up with you later, so keep us in touch with what is happening. Shawn, I think there are several Christians on the site, and I think if you have a look around you will find someone on the same wavelength - eg I think there is a chap called John whose wife had thyroid cancer. All the best to all of you xxxx Penny

Hi Shawn,
I'm so sorry you have to be here at all, but hello nevertheless. You have exactly the same type of cancer as my husband had, neuroendocrine carcinoma with small cell characteristics. They never did find the primary site....possibly because there wasn't one, but that would make it a very very rare cancer, or alternatively the primary was so aggressive it burnt itself out. Nothing was ever found on ct scans, x rays etc., so it could have been a primary in the liver. So little has ever been written on this, as it's so rare, that they didn't even contemplate it. As it was, the small cell features meant they prescribed a chemo regime of Etopocide and Cisplatin. He had 6 in all and although at first it did shrink the tumours and made his breathing easier (the liver tumours were compressing his lungs), by the time they had done 6, they felt that there would be no benefit in continuing. He could have had 8 in total, but they said that further down the line, there may have been a possibility of CAV chemo.
Unfortunately, we never got that far and following the last chemo in February the cancer came back with a vengeance and he never got to his follow up appointment. He was 46 when he died earlier this month.
Neuroendocrine produce some peculiar symptoms...my husband had hot flushes, food cravings and hiccups a great deal. Towards the end of his life he experienced panic attacks. All of this was due to the hormonal nature of this type of cancer, but the medical team were able to control both his pain and his symptoms.
I sincerely hope that they manage to control your cancer a little longer. My very best wishes to you.

To Penny, Fraggles, Shawn and all on this thread...

Not all members of the Forum will share my Christian faith but of course you are all in my thoughts and prayers anyway!
I sent a message to Alex yesterday asking if there might be a Section entitled either 'SPIRITUALITY' OR 'PRAYER SUPPORT'. This would facilitate postings from members who have a faith - whether Christian, Muslim, Hindu, Seek etc..." I also contribute to a C. of E. site where my Reader colleagues make specific prayer requests.
Do you think others would find such a thread useful?

John

By the time he had gone to the doctor with symptoms it was to late the cancer had spread. He died within a month and I have no answers as to why. All the doctors seem to say is this is a rare cancer, it's like their way of not really treating it. I truly believe my son didn't have to die by a cancer eating away at his insides. Chemo didn't help. Just two months prior he was vibrant, happy, young man full of life. And within weeks he was gone. I don't really hear about this cancer in the young so I am hoping of educating myself for his sake.

I am new to this site, having had my partner recently diagnosed with neuroendocrine cancer on the head of the pancreas. I came across your posting by accident.

I am so sad to hear about the tragic and sad death of your husband. How are you doing? Do you have children at home with you?

My partner was diagnosed after experiencing pain in the stomach, an operation revealed 2 grapefruit sized tumours on each ovary and fallopian tube, which were then removed. The primary tumour was found on the pancreas.
She is due to start radiation treatment this Thursday. They talk about it being life extending, and life enhancing, rather than being a cure.

I guess what scares me is that it is all so uncertain. I have the feeling I am waiting for the cancer to pop up in another place.

I am aware, that I have just dumped all this on you, and you have your own grief to deal with.So please, don't reply if you can't face it or are just too tired from it all. Maybe you want to leave all this behind you now,I would understand that.

kind regards,and thoughts to you.
Sally

I think this is a really good idea. Have you pursued it with the moderators? I hope you do.

thanks for thinking of this.

kind regards

Sally

Just wanted to say hallo, and that it must be a horrible shock for you and your partner to have found out about this. I hope that the treatment has a very very good outcome, and that although they are saying now that they might not be able to completely eradicate it, you never know what new treatments may be along within the next couple of years. Sending hugs to you both xxxx Penny

Hi Penny

thanks for your kind words. Yes, all hopes and prayers and wishes for a good outcome from the treatment.

thanks

Sally