New,confused and worried.

4 Posts | Page(s): 1 

New,confused and worried.

by daisy47 on Sun Mar 22, 2015 09:16 PM

Quote | Reply

Hi,i am a mum of a 26yr old son who is currently going through the diagnosis process for carcinoid syndrome.  

He has been ill for about 14months and was thought to have lymphoma.

Here is a quick review of symptoms ....

In january last year he has loose stools with blood,they did blood tests and sample test but nothing found.

About march time he had a couple of enlarged nodes in groin,had antibiotics that did not work. Bloods for viral,bacterial and std's all negative.  His nodes continued to grow and new ones appeared,again antibiotics not work and all bloods negative again.

By june he was getting full body pain.night sweats and fatigue plus weight loss,doctor now suspected lymphoma and he was sent to heamatologist . He was seen in july,yet again all bloods done and ok .  He had a biopsy in september but it came back as reactive so was put on watch and wait.  Was seen by rehumatologist ,had tests to rule out lupus and other things.

By now he has a red spot rash on his arms and legs plus his face,neck and chest goes red like a bad sunburn. He is sent to dermatology,has biopsy to rule out lymphoma in skin. They decide to do tests for carcinoid due to his flushing.Seroto nin levels were a bit raised and he was asked to do the test again.

He goes for his appointment to heamatologist who is worried as he has many swoolen nodes all over,some very large and abnormal. In january he has another 4 matted nodes out and again they were reactive. His carcinoid tests showed raised seretonin ans dopamine ,the lab wanted to do a more detailed test which we should have results in next week or so...been 3 wks since they were done but they take a while.

His loose stools have been getting worse with more blood. Also its noted his BP is high.

Sorry,its so long. I have a couple of questions.

Do you have or is it common to have general lympthendopathy with carcinoid cancer?

Do you have loose stools and bleeding?

Do you have a red angry rash on limbs or body?

Do you have pain all over your body ?

Also sometimes night swaets?

After going through every channel and tests it is looking like carcinoid given his symptoms and high seretonin/dopemine levels.

Thank you for your time.

RE: New,confused and worried.

by mystinen on Fri Apr 24, 2015 10:11 PM

Quote | Reply

Carcenoids are a very touchy subject because is so rare, doctors don't even know what are they looking for...runny stools and blood means usually colon, intestines, stomach or anything like that ...I would go to an oncologist and ask for a PET, CT Scan or an MRI and make sure they do it with Contrast

...I am not a doctor but I do have carcenoids for the 2nd time the first time 11 nodules in my lungs and now over 50 (15 yrs later) 

RE: New,confused and worried.

by daisy47 on Wed Jul 08, 2015 08:55 AM

Quote | Reply

Hi,thank you for your reply.  Since that post my son's tests still show increased seretonin levels. At the end of may he had very severe diarrhea and was hospitalised as he was dehydrated .  He straight after got cellulitis in one leg which has not fully gone...he was on 15 days IV antibiotics .

They have ruled out everything and the seretonin tests are the only thing showing something.  His deep nodes are enlarging and they found on his last appointment 2 weeks ago he has a mass on one side of his lower abdomen ,they are going to scan him.   He is waiting to see an endocrine doctor.

Its taking so long to get a diagnosis but i do know it can be the case with this type of cancer.   We are getting closer at least.   Thank you again ,your experience with enlarged nodes has been helpful.

RE: New,confused and worried.

by LauriG on Fri Aug 28, 2015 12:42 PM

Quote | Reply

Hi Daisy,

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.

Wishing you and your son the best.

Blessings, Lauri.

4 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.