katherine well done. clare 1361-i can tell you that a bowel op is worse to get over than the liver one. look back at what we have said/advised about liver ops. bless you all.

Thank you everyone for your good wishes.

Mike, they are keeping me on Sando injections until at least next scans in mid May even though no tumours visible at the moment. I was told that this is because it inhibits growth and I think the idea is to stay on it for a year following surgery

Best wishes to all

Dear All,
Just wanted to post that I got good news from Leeds last Thursday. They had removed primary from my intestine and some further spread there. Also 14 lymph nodes of which 3 were infected. Said they got good coverage around the liver tumour. Tumours were 'well-differentiated'. Anything else I should ask next time?
Am being followed up at Leeds with CT scans because they did the op. Also said they would do an otreoscan after a year. Referred back to Hull though for 'carcinoid follow-up'. I guess that means urine and blood tests. I would be really grateful if anyone could let me know what follow-ups they are on and how useful they find these?
I was completely knocked out the day after the visit just through the tension the day before....drive over to Leeds, waiting an hour to be seen and the consultation.
Anyway. free for 5 weeks now until the first CT scan and results.
Please get back about your follow-ups!
Thanks and very best wishes to all.
Mike J.

Hi Mike

Good to hear that you are doing so well! I had a liver resection 2010. Since then I am checked every three months - chromagranin A, Gallium PET or CT. For me this has been invaluable only had one all clear - Nov 2010 found lots of tumours in womb so had a radical hysterectomy, and on two other scans found had tumours in liver so had liver ablations. Have just had CA done again and that has gone up from 180 to 447 - having an octreotide scan on wednesday/thurs this week and will get results on Monday. Have everything crossed but cant help feeling that something must be going on.

Keep posting!

Regards

Bonny

Hi Mike,
Really good news well done. We must have been sat in the waiting room at Profs at the same time. Got called back as some blood tests taken by my GP indicated a possible water retention problem. They did an Ultra sound no fluid, just a liver growing nicely in they void created by the removal of the damaged right side. Biopsy showed a total of 9 tumours removed 8 from the liver and 1 from the diaphragm. They seemed well happy and like you have scan and follow up in 6 weeks.

Regards

Roger

changed my mind about going for all scans yearly i want every 6 months still as a long time if get any problems-dont you think?

Hi Boony

Seems that we are very similar would love to speak privately as have had the same surgery and RFA in September 2011 which has left 8 tumours they can see with only 1 growing at 1mm per week. My CA has trebled and urine up 50% awaiting further scans and possible LU-177 treatment. My email is mays2@talktalk.net.

Thanks all. I'll make sure I get the CgA and 24 hour urine tests as well as the CT I'm already booked in for.
Very best wishes for your Octreotide scan and results Bonny. Let us know how it goes.
Glad your progress is so good now Roger. Prof. Lodge certainly knows his livers and I think we do well to stick close to Leeds just in case any more treatment should be needed.
All the best, Mike.
Incidentally , I noticed on the web that you can get CgA and 24 hour urine tests done privately, with very quick turn round of results. About £120 for the blood test and £180 for the urine. I'll stick with the GP but it might be worth considering for anyone having problems getting the tests through the usual channels. There are places all over the UK that do this.

Hi Mike,
Just a quickie (which makes a change for me) lol
How are you feeling today?

Claire
xx

Dunno Claire because my wife started worrying about recurrence last night ( my gut was all over the place). As a result spent all afternoon reading some 'nordic guidelines' on treatment. Figures made me nervous but otherwise feel ok. So just don't know!
All the best, Mike.

Stop that reading on the net always messes your head up....my guts still all over the place and so far no recurrence....know how you feel though as I worry about recurrence but I guess we just have to get as involved in living as possible. I get really anxious following scans but between times try to enjoy as much as I can.

All I can say is we hope and pray that our situation will stay stable and in the event that any tumours do appear they will be managed quickly and there are many options available. You have done brilliantly so far and it is still really early days so the chances of regrowths are remote.

If I am over anxious I ask for an extra blood test, when I hear that my liver function is improving I feel better

Warm wishes

Katherine

When I am feeling unwell with the carcinoid, I find I can't read a lot on this or any other noid site, it makes me very anxious and I talk myself into having everything anyone says. My first worried port of call is my consultant.

Take care
Sally

Hi Mike, I can understand how your Wife is worried (& you too), but you've been through alot recently and it'll take time to settle down & get back to "normal" (as normal as it can be). I'm not a Doctor, but I'd say you have nothing to worry about with reoccurence, it must be too soon, considering how slow growing carcinoids generally are. But I know regardless of what treatment you have, it's always going to be front of your mind and playing on it, "what's going on in there" (tummy). I think like Sally says, if you have any doubts, or worried, to set your mind at rest, can't you ring your consultant or part of your hospital team for reassurance?
Our Consultant told me to stop reading (on the internet, said I'd done good research, but it's too much & time to stop, he said if I want something to read to come on here, that's how I found this forum) It's worked, as when I want to know something or looking for reassurance, I come on here and read what others are saying.
Try not to worry, give your wife a big hug & say together you'll both be ok!
Thinking of you
Claire
xx

Hi Mike (and others on this thread)

I'm a big fan of the Leeds surgical setup too - though my consultant surgeon is Mr Menon rather than Prof Lodge.

I'd like to put my size nines into this delicate area of how much information about NETS to research on the internet. Now I'm one of those geeks who wants to know everything about it - BUT you have to devote a lot of time to it; it helps to have a science degree and unless you can follow some of the more complicated stuff as you drill down into the detail, it can confuse rather than illuminate.

It's also important to hold onto the fact that every case is different and science has a convenient cloak for this inconvenient diversity, called statistical significance. You are not a statistic anymore than I am.

I'd advise that unless you or someone close to you is capable of understanding a lot of the medical detail, then leave the interpretation of research to your medical team. If you have unaswered questions or concerns, go armed with a written list of them at your next consultation.

It is never a good time to have cancer but, based on hundreds of articles and papers I've read over the last seven years, I do believe that we are heading into a period of greater optimism for cancer patients (especially NETS) than any time in recent history. Even if you do get further metastases, as happened with me, there are current and future therapies that will be brought into play to knock them back. The fact that you, Mike, are on somatostatin therapy is a big plus too.

"Keep calm and carry on" was a WW2 poster slogan which you see on "Past Times" mugs in the shops - though strangely it was never actually used at the time. It still seems like a good strategy to me.

Best wishes
Tim

Thats such a sensible reply Tim, if anyone needs to know more about nets and carcinoid, then Tim is certainly the man for a good and unalarming answer.

One thing that always puts things in perspective is medication. If you read on the product information about the side effects of this certain tablet, the percentage of what you may suffer puts you right off and often I think you get these symptoms because you have read that you might. After all these years I now wont read them, I ask my husband to read them and tell me if he has any concerns, but before that I have quized my consultant until they are fed up with me that this tablet is not going to cause me a problem.

If not I have found myself getting totally wound up and worried.

Sorry it's off topic, but seemed to slide in quite well with Tims information.

Take care
Sally