Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
I haven't been on lately so just saw your post.
Has your son had a colonoscopy? I am making an assumption here, but I would have thought that if he is passing blood, something would be visible on either colonoscopy or capsule endoscopy (when you swallow a camera so they can see into the small intestine - a common place for carcinoid).
Blood serotonin was the only marker for me that was elevated.
Claire, I agree with Tine1, definitely keep pursuing doctors and get to a specialist.
MRI is not good at visualizing carcinoid (that is written extensively in the literature), so MRI should not have been used to rule it out. If they wanted more confirmation than the Octreoscan they should have referred you for a Gal 68 PET scan (I am not sure how hard it is to get referred for one of those where you live).
Obviously there are probably a number of possibilities for your symptoms, but I think you are wise to consider carcinoid. In other words, don't want to worry you that you might be right, but also think it is important not to ignore it. The fact that you are already searching for possibilities online tells me that you feel something is not right.
I first started flushing around the age of 18yrs, so must ...
Hi Kathy, I have different looking flushes depending on the trigger. One of my most dramatic flushes is triggered by leaning forward. My hypothesis is that I am squishing something causing it to do a hormone dump.
It is still worth doing a colonoscopy - it is just that a clear colonoscopy doesn't guarentee no cancer. I still get one every few years. The last one I had the gastroenterologist (who had initially told m...
Also just seeing this message for the first time.
Where are things up to with you now? It is such a horrible and confusing time when you don't know for sure what is causing what is happening to you. Of course it is going to make you emotional, which might also make your symptoms worse.
There is a wonderful support group in Sydney called the Unicorn Foundation. I would recommend that you look them up beca...
Sorry Kathy, I have not been on in a while so only just saw your message.
That post was from several years ago and Tassie is where the labs in Queensland used to send them. Now I think they do most of the carcinoid tests locally.
Sorry I did not see your post sooner to clear up that confusion. A lot changes in the medical field in a couple of years!
Kind Regards, Lauri.
Hi Karen, I haven't been on in a while and am just catching up. I read your post. Since I was last on here they still have not found my tumours. What I will tell you is that the only thing that has made these past 5 years bearable for me is being on Sandostatin injections. I have had to have some dosage increases over the 5 years, but when the levels are right I can be almost symptom-free (as long as I don't have alc...
Is the doctor putting you back on the Sandostatin injections? That is all that I can suggest. Even after all this time, and multiple Ga68 Dotatate PET scans, my tumours are still hiding. Injections of Sando are my only treatment option at the moment. If I were you I would be asking to be put on long-acting Sandostatin, and having short acting rescue shots for in between as needed. The only other thing I c...
Hi - haven't been on for ages and just saw your post Hanginginthere.
There are carcinoid specialists who would disagree with the decision not to operate - they have found that, unlike other cancers, removing some if the tumours, even if it is not possible to get it all, will greatly improve symptoms and life expectancy. If you would like more info let me know and I can direct you to an online presentation ...
Have not been on for a very long time so only just read your posts. I got diagnosed with syndrome in 2010, but they have not been able to locate my primary despite me having had 6 Gal 68 Dotatate PET scans in that time (meant to be the best at finding them). However in 2012 my Mum was having surgery to remove an ulcer from her small intestine and while in there the doctors discovered by chance that sh...
I have Carcinoid Syndrome but no tumours located. I am being successfully treated with Sandostatin LAR. I am very thankful to God for the many miracles that resulted in my diagnosis.
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