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.

Turkey, Volunteer Mentor | @tomrennie | Mar 2 9:01am

@cindypat1 Other than your surgery, have you had any other treatment?

cindypat1 | @cindypat1 | Mar 2 5:12pm

Not yet. Dr. said we would monitor it. I go back to Mayo in May for my next scan. I’m sure the new lesions will have grown at least a little. So don’t know how long I will be able to go without starting the injections. Like I had said before I was expecting to be able to go a little while before having new lesions show up. Thank you for responding!

Turkey, Volunteer Mentor | @tomrennie | Mar 2 6:10pm

In reply to @cindypat1 "Not yet. Dr. said we would monitor it. I go back to Mayo in May for..." + (show)

@cindypat1 Let's see what happens in May. Keep positive thoughts. A grade 2 isn't the fastest growing. I am a stage 4 grade 2 pancreatic primary myself with liver metastasis. It can be a mental and emotional roller-coaster of ups and downs, so enjoy any treatment break whenever you get it. How are you feeling overall?

cindypat1 | @cindypat1 | Mar 2 7:59pm

I am feeling good. So do you have treatments on and off? How are YOU doing?

jlsgt | @jlsgt | Mar 3 5:07am

I would suggest that what your tests reveal is not a reoccurence, but rather imagining picked up more in your recent scan due to any number of factors including who is reading/analyzing the image. It is not an exact science if you will. I've had a closet full of these tests and all kinds of findings come and go. Best of luck to you.

vinnie694 | @vinnie694 | Mar 3 9:07am

I also have Stage 4 grade 2, prime , intestines and metastasized to the liver, functional. I also have carcinoid syndrome, which my monthly injections take care of. The monthly Injections appeared to work for a while, after a few years some tumors started to grow.. After my PRRT treatments were over, there was no growth, the larger ones were shrinking and the smaller ones were now barely visible, and some were not visible.. I will be having another scan next month to see if they are still shrinking, stable or starting to grow again...There is always hope !
My medical team is at Mayo Jacksonville....

cindypat1 | @cindypat1 | Mar 3 9:15am

As everyone says this is a journey to be managed. I hope your next scan is good. Please let us know how it goes.

debbieg99 | @debbieg99 | Mar 3 11:05am

I am 74 and was diagnosed last June with stage 4 neuroendocrine cancer grade 1, originating in the ileocecal valve. I was operated upon on August 4 to resect both segments of the left liver, the ileocecal valve, about a foot of large and small intestine, appendix and many lymph nodes. The doctors were very optimistic about having got it all. Three months later, a CT scan revealed further lesions in the liver and I was put on lanreotide. After 4 injections (4 months), I had another CT and MRI which confirmed little or no growth. The "tumour board" meets next week to decide whether surgery is in order, or possibly ablation. I interpret that I am having good results with the lanreotide holding further growth at bay. Has this treatment been considered for you?

cindypat1 | @cindypat1 | Mar 3 5:54pm

That will be the next step if these continue to grow.

Turkey, Volunteer Mentor | @tomrennie | Mar 4 7:28am

In reply to @cindypat1 "I am feeling good. So do you have treatments on and off? How are YOU doing?" + (show)

@cindypat1 I have been living on chemo, mostly capecitabine, for 3.5 years. I have taken a week off a few times, but that is about it. With the spread of the cancer, surgery isn't an option for me.