1. < Neuroendocrine Tumors (NETs)
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New spots showing up

Posted by cindypat1 @cindypat1, Feb 23 10:57am

Just an update….I am 72 years old with stage 4 grade 2 neuroendocrine cancer (functional but no symptoms ). Primary in my small intestine with metastasis to my liver. I am seen at Mayo in Rochester with Dr. Hobday. In April I had surgery. Removed the left lobe of my liver which had a large tumor, and removed 3 small ones from the right lobe, the tumor in the small intestine with some lymph nodes and took out the gallbladder. It was a rough recovery. Last month I had my first 6 month CT scan. I already have 5 new spots in the remaining left lobe that probably came from the large one. I know we will always have this cancer but I didn’t think I would have it this fast. Dr. said since they are small we will just watch them for now. Will do the injections later if need be. I guess I’m not quite as positive about it now with this quick reoccurrence. Wondering how it has gone with the rest of you.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Turkey, Volunteer Mentor | @tomrennie | Mar 16 10:08am
In reply to @debbieg99 "@colleenyoung thanks for asking. The one larger tumor is to be ablated and continued Lanreotide treatments..." + (show)
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@colleenyoung thanks for asking. The one larger tumor is to be ablated and continued Lanreotide treatments for the smaller lesions as none has grown since November. Also of course, regular monitoring by CT every few months. Very good news in my opinion!

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@debbieg99 Congrats. Getting good news is always an awesome feeling. Is there a time table for the ablation of the larger tumor?

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debbieg99 | @debbieg99 | Mar 16 10:45am

It sounds like it would have been within a month, but our son is getting married in the UK (I am in Canada) on May 15, (and I want to attend) so they don't want to do it before in case there are complications that might require hospitalization. Otherwise, it is expected to be outpatient treatment. They are confident that the procedure can wait because the Lanreotide appears to be doing its job and no growth has been detected in 4 months.

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Turkey, Volunteer Mentor | @tomrennie | Mar 16 11:16am
In reply to @debbieg99 "It sounds like it would have been within a month, but our son is getting married..." + (show)
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It sounds like it would have been within a month, but our son is getting married in the UK (I am in Canada) on May 15, (and I want to attend) so they don't want to do it before in case there are complications that might require hospitalization. Otherwise, it is expected to be outpatient treatment. They are confident that the procedure can wait because the Lanreotide appears to be doing its job and no growth has been detected in 4 months.

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@debbieg99 That too is awesome. Consciously delaying treatment can be gratifying unto itself. It means you are comfortable with your treatment, you are on the same page with your care team, and you have a plan moving forward that has already shown success. You can now prepare for the wedding without the additional stress of treatment. I am happy for you. Hopefully, the wedding is somewhere fun in the UK?

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debbieg99 | @debbieg99 | Mar 16 11:57am
In reply to @tomrennie "@debbieg99 That too is awesome. Consciously delaying treatment can be gratifying unto itself. It means you..." + (show)
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@debbieg99 That too is awesome. Consciously delaying treatment can be gratifying unto itself. It means you are comfortable with your treatment, you are on the same page with your care team, and you have a plan moving forward that has already shown success. You can now prepare for the wedding without the additional stress of treatment. I am happy for you. Hopefully, the wedding is somewhere fun in the UK?

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@tomrennie Thank you so much! Yes… London

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Turkey, Volunteer Mentor | @tomrennie | Mar 16 5:01pm
In reply to @debbieg99 "@tomrennie Thank you so much! Yes… London" + (show)
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@tomrennie Thank you so much! Yes… London

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@debbieg99 Enjoy London. Have you ever been there before?

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debbieg99 | @debbieg99 | Mar 16 6:25pm

Thanks you. Yes, several times

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