Tumor w/ minor grow with no Octreotide & larger growth w/ the shot
I was diagnosed with metastatic neuroendocrine cancer in the liver 4cm x 3.1 cm in Sept. Grade 2, non-functioning, well differentiated KCI 6-8%. My MRI in Dec measured it 4.2 x 3.4 when I received no treatment. Very minor change.
My March MRI after receiving 4 shots of Octreotide showed the tumor measuring 5.2 x 2.4 3 months later. The 5.2cm showing 30% growth with treatment. Other side of the tumor declined 30%.
Another tumor was .8 x .9 in Sept and .9 x .9 in Dec and 1.5 x 1.3 in March. 36% and 44% larger.
It seems to me that there is more growth now with Octreotide than when I was not receiving treatment.
I wonder if anyone else had the same experience. The PA simply said it might have been even been more growth if I had not had the treatment.
Wondering how the decision is made that Octreotide or any treatment is effective.
My glucose has gone up every month I have taken the shot, and now is 50% higher than when I started. Bilirubin has gone up the same amount and I am low on iron and % saturation for iron. Known side effects.
I intend to discuss with the dr on my next appt. Interested in others experience. Thanks.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Are you also getting PET scans with these MRIs? If so, what do they show? Sometimes it can be really hard to say what affect a treatment has on tumor growth. 30% up on one side of tumor while 30% down on the other side??? That seems weird. I'm questioning repeatability on imaging technique or some other factor at that point. So far my images/dimensions are trending slightly larger with each scan since surgery 2 years ago.
Is your liver the primary NETS site?
They could not determine the primary or origin. Pet scan only lit up in the liver as metastatic. No evidence of tumor anywhere else. Doctor told me it was not uncommon to not know the location of the primary.
I have not had any follow up PET scans. I agree that the numbers do not seem to be logical. I also had one image read with one set of numbers at the beginning and a different measurement at the end of the report. I will ask the doctor to return them to imaging and reread. The quality control is lacking.
Maybe try the Lanreotide injection