Connect
Mother might have neuroendocrine tumors, is being told she has IBS
Maybe this is rant post, but my mom aged 56 has been having diarrhoea and flushing since past 7 months and I've seen three gastroenterologists, one endocrinologist and one medical oncologist with no avail other than it's just ibs.
They did one cect abdomen in June, two times endoscopy and twice colonoscopy and one fdg pet ct with all normal study. But the twist is her nodes in abdomen, chest and neck are enlarged, not big enough to biopsy apparently and they are fine with it because it didn't show activity on fdg pet.
My mom almost landed up in sepsis during one of these watery diarrhoea episodes, was admitted in ICU this September and discharged after her blood pressure was above 100/70.
These diarrhoea episodes are associated with nausea, cramping, epigastric pain, joint pains and first it starts with increased stool frequency with full blown watery diarrhoea.
They still refuse to get atleast the 5hiaa and chromogranin test done saying even if 5hiaa is marginally elevated we will just end up in a wild chase for it and they make it seem like it's super impossible to catch. A lot of people who live long with it also seem younger. Are there any older survivors of the disease? Also i live in India there's no one called net specialist:/
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
Sorry to hear about your mother's issues. I'm curious what led you to even suspect NETs which is uncommon. Did one of her doctors suspect it at one point?
If there are no NET Specialists, are there Ga 68 Dotatate PET/CT scan available in India? On the NIH website (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6661311/), it says "Safety and efficiency of 68Ga-DOTA-conjugated-peptides PET scan has also been demonstrated (14). In a recent meta-analysis, the estimated sensitivity of 90.9% and specificity of 90.6% have been reported for 68Ga-DOTATATE PET/CT ". I hope this scan is available/accessible to your mom, and wish the best to your family.
-
Like -
Helpful -
Hug
2 ReactionsI’m so sorry to hear your mother is having these terrible symptoms, , I’m 61 and I’ve been living with this disease since 2011 when I had surgery to remove a tumor from my small intestine, prior to the surgery and discovery , i had a carcinoma tumor I suffered for years with digestive problems, I knew it was more that the ibs so I continued to go get another opinion at this point I had breeding and finally my 4 doctor gave me a pill with a camera and noticed the tumor , I notice your very educated about this disease , don’t give up
Please contact Dr. P. Jaganath at Lilavati Hospital in Mumbai. You're correct that this disease is not well tended to in India, but there are resources. Also, Tata Memorial hospital in Mumbai have resources. I don't know where you are in India. P. Jaganath is also available at Continental hospital in Hyderabad. All the necessary scans ARE available in India. But you will certainly have to travel to some big metropolitan center.
-
Like -
Helpful -
Hug
1 ReactionWe took her to Apollo hospitals in Hyderabad. They did a chromogranin a test and that came elevated at 1094. But doc said possibly due to proton pump inhibitors too, so we are waiting for the urinary 5hiaa too so we can get a gallium dotatate pet which is available in their centre. And maybe I'll push them for mri or endoscopic ultrasound of pancreas too.
But isn't dr. Jaganath a surgical oncology doctor? Will he directly see the case without knowing where the tumor is?