Anyone had a significant difference between a CT and MRI reading?
My precious wife of 39 years has grade 3 NET in her liver and pancreas (also in the ileum that was removed). She is receiving Monthly Lanreotide injections and has been stable for 6 months. Her last MRI in October showed right hepatic lobe lesions measuring 1.7 x 1.3 cm in her Liver. Early November she was in the hospital with an infection which she had an unrelated CT scan with results in the same area of the liver showing a mass in the right hepatic lobe measuring 4.1 x 6.0 cm. Nearly 3 times larger. She will be going in for another MRI on Thursday (a month earlier than scheduled). I realize MRI's are more detailed for soft tissue than CT scans, however, has anyone else had a such a significant difference between a CT vs. MRI? Thank you all for your support.
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@chaplaindan: I was dx NET, grade 1; stage4; KI67< 1%; well differentiated, non-functioning in Oct. 2022 with metastases to liver (multiple lesions). I have a NET Specialist now at City of Hope and have learned that MRI with and without Eovist Contrast (Dr must be specific to order) results in the clearest test. This allows for more precise measurement and location of liver lesions and best treatment decisions!
Thank GOD that NET researchers & specialists have developed many procedures to help NET patients live WITH this disease. Do your research, join more than one NET specific group and ask questions from patients who have had many treatments on their NET road.
I finished a 4session PRRT Lutathera treatment last year which shrunk my tumors! There is good quality of life for me for now!
Those of us with advanced stage of this disease have to accept that lesions are fickle and can appear anywhere, but we must have hope and remain strong. New treatments are being developed and we have a team of really smart people aiming to find a cure. Be hopeful, be happy!
dbamos1945
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12 Reactions@chaplaindan
In addition to the previous post (well done) -
Based on my wife's battle with NET metastases from pancreas and ileum (2014) to liver and bones (since 2018):
1. Ensure a NET team is established with her NET oncologist as the "quarterback" supported by other providers with NET experience e.g. radiologists, etc. etc.
2. A case review /second opinion can be considered especially when a new treatment (beyond initial treatment) is recommended and if you are unsure
3. Be your own best advocate - intimately you and your wife are the ones leading the team
4. In conjunction with your NET team, be updated on any clinical trials that could be appropriate.
5. Research, Research, Research
God bless both of you
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6 Reactions@chaplaindan
Additional thoughts applicable to imaging (to eliminate variables) you may consider:
1. Use the same scanning device
2. Use the same contrast agent
3. Regarding multiple NET tumor locations: We have found in general, radiologist reports are lacking in identification of specific location and size of tumor(s) over time; without this information from scan to scan it is not possible to determine true treatment efficacy.
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5 Reactions@chaplaindan
Consider having the CT scan done at the hospital read by your wife’s radiology team
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2 ReactionsI decided to get my primary care from a center of excellence for neuroendocrine cancer so I went to the Mayo Clinic in Rochester Minnesota. My team feels the best imaging for NETs is a CT scan with contrast plus a PET-CT dotatate scan. I recently underwent two embolizations for my liver metastasis and these scans did a good job of showing the results of those in good detail. I get my monthly lanreotide injections at University of Michigan Medical Center, which is only about a 1.5 Hour Dr. from home. But, I get my primary care from Mayo Clinic in Rochester Minnesota. It’s a full days drive from my home but the level of expertise and experience is worth the extra time and cost for lodging, gas, meals, etc. I wish your wife all the best of luck.
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5 Reactions@chaplaindan, what did you and your wife learn after the follow-up MRI? How are you both doing?
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