Hi everyone I had a lobectomy done about 30 years ago then a pneumonectomy done 10 years later which left me with 1 lung after having cancer of different types 4 times in other places in have just been diagnosed with liver carsonoid of which I have 2 I do not drink and I have not smoked for 40 years plus however the consultant was amazed to find out that the tumors were from my lung ops all those years ago they told me at the time no chemo would be required as tumors were all contained within the removed lung lobes obviously there must have been stray cells floating around so had I had chemo I probably would not have liver cancer now.so I would suggest anyone having a lung removed. have chemo as well just to be sure and not to Finnish up like me. Treatments for my tumors can only be done one way I cannot have chemotherapy now as they say I could Finnish up with sepsis also they would normally use surgery but for me it's impossible with 1 lung to have general anesthetic so they are doing an arterial embolisation meaning they will access my liver blood vessels via my groin and feed a tool along and use a sealer and close off the vein to the tumors starving them of blood it's not a cure but will slow the growth and if Needed it can be done again mickmm
Carcinoid cells from lung spread to l... - Lung Conditions C...
Carcinoid cells from lung spread to liver 30 years later even though the lungs was removed
That is a tough outcome mickmm and I wish you all the best with it.
It's really kind of you to take the time to warn other's of this unfortunate outcome Mickmm. I'm also sorry to read how much you've been through and wish you good luck on the treatment. xx
You have gone through an awful time yet still trying to help others . Best wishes for a good result.
best of luck and love to you - hang in xx
Hi Mickmm, greetings from another NETs patient. Who are you under now? Are you under one of the centres of excellence?
NETs can re-occur any time over a lifetime so whoever told you you were cured were wrong. And chemo doesn't work for our type of cancer unless you have/had high grade NETs. I'm guessing if it took 30 years to show in your liver it was low grade and unfortunately the liver is a common site for metastasis. Are you a candidate for PRRT?
Hi many thanks for the reply sorry I don't think they said it was a cure for it the treatment I am gething is artI rial embolisation where they block off the blood supply to the tumors I do think it's low grade type and I have just had an injection to help control the hormones I think they did say it's not a cure but it aye slow things down theyour also said 1 of my lymph glands were at about 8 cm but for reasons knot known it has reduced to 2 cm strange what is PRRTE thanks mick
Apologies, I meant the initial surgery. There is no cure for carcinoid/NETs. You can be NED but are never cured. It's microscopic and in the blood. We can never give blood/donate organs etc. It's a bitch of a disease.
Ah yes embolization is used a lot. Do you have carcinoid syndrome? Have they done the standard bloods etc for NETs?
I'm in Ireland so not sure where exactly Leicester is but here's a link that might help you. netpatientfoundation.org/20...
The Royal Free in London is the longest NETs centre of excellence in the U.K. If you're not under a NETs specialist you should try to see one. Regular oncologists and doctors in general do not know a lot about this type of cancer.
PRRT is Peptide receptor radionuclide therapy (PRRT) is a molecular therapy (also called radioisotope therapy) used to treat a specific type of cancer called neuroendocrine carcinoma or NETs (neuroendocrine tumors). PRRT is also currently being investigated as a treatment for prostate and pancreatic tumors.
Also, they could start somatostatin analogue injections to slow down growth like lanreotide or octreotide
Have you had a gallium 68 scan done?
As I understand things my problem is neuroenocride tumors and they have started me on injections of lanreotide mind you next had the worst migrane and now it's affected my bowels giving me loose stools and wind taking Imodem tablets three told me it's to slow down the growth and check hormone levels as I understand
Yes Carcinoid is the old term they used, NETs is the correct term now. I started on lanreotide last month too and I'm in the horrors. Due my next shot on Friday and I'm for want of a better word, 'shitting it!'
I've had awful headaches too and the diarrhoea has been uncontrollable for over three weeks. My doctors have started me on codeine to try slow it down and it seems to be working. I was eating imodium and buscopan around the clock but it didn't help. They can also prescribe creon (pancreatic enzymes) if things don't improve but from talking to other patients it can take 7/8 months for the side effects to subside.
Do you know the manufacturer has a service whereby you can have a nurse come out to your house every month to give you the shot? I've just arranged it with them. Will save me 55 Euro for that appointment. Thank god!
Hi thanks for all the valuable information and the best of luck with your next injection I am not sure how long you have to have them for information allready take pancriatiic enzymes because I do have pancriatitis so that will help as well thanks
I'll be on them for life if it works. Next scan is in December so hoping to God it slows it down. I have too many tumours in my lungs to have them removed and mine has metastasised too. It sucks! I'm only 41 with a 2 year old so it's pretty terrifying.
If you're on facebook join the carcinoid cafe and loveable lungoids group. Huge wealth of information from fellow patients. Also Ronny Allen is a Uk patient who writes a blog and is jam packed with information. Best of luck xxx
Hi I forgot to ask about these centers of excellence in am at the Leicester royal oncology dept that some who is dealing with it thanks mickmm
Thanks for the heads up Mick. I had lobectomy 8 years ago with no follow up chemo, so in same position. Hope the arterial embolisation gets rid of the tumours. Please keep us updated. All best wishes x
Many thanks it's booked for 11th September I just want to get it all over with and try to get back to some normality we have been hospital that much we have a loyalty card for the cafe ha ha
Do you have NETs too, Dedalus? I didn't realise there are a few of us here
Not sure exactly what NETs covers (looked it up & says neuroendocrine cancers, but have no idea if my lung cancer comes under that umbrella?). I also had right kidney removed in 2008 due to cancerous tumour & have had 2 lots of bladder cancer since then. Both the kidney and lung cancers were primary thank goodness xx
Neuroendocrine cancer is a specific type of cancer. You can have it in eg your lungs but it's a very different beast from lung cancer
Don't think mine was NETs then as I assume it would have been mentioned. Lovely to hear from you by the way. Hope your treatment going well xx
Treatment is killing me lol I've had awful side effects. They said I'm not tolerating it at all but this bloody cancer doesn't respond to chemo or radiation and this is the first thing they try so have to keep on them. It's spread a lot though so living with terror all the time. Just want to see my little girl grown up and happy. Gotta keep on keeping on.
How are you keeping? Xxx
HI I am very sorry ito has taken hold of you at such a young age it just doesn't not seem fair like I've said before ime from a family of 10 and none of them as ever had any illness I got it all I have bronciexis with 1 lung and today is a bad day been coughing all day and it makes my chest hurt I have taken my Imodem and enzymes but still going to the w/c I am not looking forward to the procedure as I have difficulty laying down as my liver is now under my rib cage so my diaphram is pushing up not helping with my breathing I am not on Facebook in was but I got high jacked so i closed it bye mickmm
So sorry to hear that and can't begin to imagine what you're going through, both physically and mentally with your darling little girl. I pray for your recovery xxx
That sounds like a beast of a condition - I know nothing about it, just posted to wish you all the best of luck and the best of treatment.
Living with copd I'm a 62 year old female
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