Just diagnosed: Metastatic NETs. Treatment?

Posted by helloitsme @helloitsme, Apr 28, 2023

Hello everyone. I am new to this site and this is my first post. I had a routine colonoscopy in March and found that I had one very small NET in the cecum. No metastatic disease was found by CT scan, but I insisted to have a PET even if I had to pay for it myself. The PET scan revealed that the tiny polyp had already metastasized to 2 lymph nodes, 1 small lesion in my liver and 2 tumors in my heart cavity. I was shocked to say the least, especially since the CT showed nothing. The oncologist said this does not respond to chemo, and it is inoperable, so he is suggesting Lanreotide to keep the cancer from growing. Has anyone had this diagnosis and treatment? It seems my oncologist does not want to discuss much with me. I have had to do my own research and ask him thousands of questions that he only answers with a yes or no. He won't even give me a prognosis, saying he's not sure if I really want to know or not. I'm really frustrated and don't even know if I should have treatment or not because I have zero symptoms and I'm so afraid of side effects from the Lanreotide. Are they bad? Does everyone have side effects? Can side effects be controlled with other medications? I'm at a total loss and feeling so scared. I just do not know what to do. I am in Austin, TX but I do have an appointment with Mayo Clinic in Phoenix in late May. I may go crazy before then! Any advice from any of you out there will be greatly appreciated...thanks for listening!

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

@phyllisden

@helloitsme, I am in the process of trying to schedule a scan (Gallium 68) as my last one was 14 months ago. It’s a bit stressful as it’s been so long but I’m just trying to focus on the fact I feel good (an hour at the gym today, 3 miles on the treadmill yesterday). Fingers crossed on this.
As for moving doctors, I mailed a letter to my former doctor today saying I was notifying him I would no longer be seeking treatment there, thanked him for his help and support over the last 4 years, and that I know he and the staff have very challenging jobs. Short and to the point and I felt better for having done it. No reason to go into my grievances, but just to move on.
So, I know there’s likely going to be a next step in my treatment, just don’t know yet what it’ll be. It’ll be a new “challenge”. But I viewed hitting 3 miles on the treadmill a challenge, and I’ve met it. Hum, guess I need to set a new challenge there.
Keep us informed please.

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It sounds like you're taking really good care of yourself and you must be in great shape because of it! Congrats on meeting your goals!
Good luck with your new doctor...I hope your new scan with show great results. Please keep me informed, OK?
I will have my first appointment at Mayo with Dr. Sonbol on May 26 so I will know more about my disease, treatment, etc. after that. I will keep you informed. Thanks for your note, and keep up the good work!

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@patrick031621

Here is my diet which covers almost every day of the year.

Breakfast---a cup of coffee (no sugar) and two or three toasted bagels with whipped cream cheese on them. Sometimes I now only have coffee.
Generally little eating after that except perhaps a can of sardines in olive oil at about 1:00 p.m. Occasionally will substitute some unsalted peanuts.
Outside of the cup of morning coffee, I drink nothing else except sips of water frequently through the day. I never drink a whole glass of water as it seems to trigger diarrhea.
Evening meal: a large and I do mean large salad of cucumbers, grape tomatoes, apple and a colored pepper. I put vinegar on my salad in large amounts. I have a large helping of a meal that has whole grain pasta, Classico Cheese Alfredo sauce, sliced mushrooms and a third of a can of salmon or a similar quantity of chicken. With the chicken being the meat we add carrots and celery. We make a large pot of each either with the salmon or the chicken and I eat each three days in a row. in other words we alternate the base meat every three days. I finish with a serving of either cauliflower, broccoli or Brussel sprouts. I will later in the evening eat a few peanuts.

I take four vitamins--a Centrum silver, 4000 IUs of D3, 250mcg of B12 and 325mg of Ferrous Sulfate.

Not a lot of calories for sure but I function very well gardening walking about three miles a day with my dogs. I will nap for an hour and a half in the afternoon. my body has adjusted to this regimen. I eat no candy or sweets of any kind. I absolutely don't ever have a soft drink or fruit juice or milk despite my other dairy. I eat no processed foods. I occasionally will eat other seafoods as shrimp.
This may sound very dull but fortunately for me I have never been that big on sweets although I did used to love when much younger a Coke and a Hershey's chocolate bar. What i have learned is the body adjusts and after a while the thought of some of the "bad " things one used to eat are totally unappealing.
And I do get an octreotide injection every four weeks.
There is no way of knowing which of these things is most effective but I do believe strongly in few calories, plant based diet and seafood. Oh and I rarely have any alcohol. In the last five months I have had one glass of wine (wife's birthday), one glass of champagne (New Year's) and a small margarita (our anniversary). That is it. God bless you and help you. Oh, one last thing--I have worked exceedingly hard to not let anything stress me, even this situation. I have learned to roll through life now as if I am floating on a raft down a calm river, despite this health issue. I think letting oneself get stressed hurts our condition.

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Thank you for the diet. I also have part of my stomach resected , so very small meals for me ( about 1/2 cup in size). I was eating cottage cheese for the protelin, but that is dairy :(. And oatmeal with almond milk and yogurt.
Just had my 3rd Lan injection. CT scan in June will be the gamechanger!
Thank you again and be well!💜

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@patrick031621

Here is my diet which covers almost every day of the year.

Breakfast---a cup of coffee (no sugar) and two or three toasted bagels with whipped cream cheese on them. Sometimes I now only have coffee.
Generally little eating after that except perhaps a can of sardines in olive oil at about 1:00 p.m. Occasionally will substitute some unsalted peanuts.
Outside of the cup of morning coffee, I drink nothing else except sips of water frequently through the day. I never drink a whole glass of water as it seems to trigger diarrhea.
Evening meal: a large and I do mean large salad of cucumbers, grape tomatoes, apple and a colored pepper. I put vinegar on my salad in large amounts. I have a large helping of a meal that has whole grain pasta, Classico Cheese Alfredo sauce, sliced mushrooms and a third of a can of salmon or a similar quantity of chicken. With the chicken being the meat we add carrots and celery. We make a large pot of each either with the salmon or the chicken and I eat each three days in a row. in other words we alternate the base meat every three days. I finish with a serving of either cauliflower, broccoli or Brussel sprouts. I will later in the evening eat a few peanuts.

I take four vitamins--a Centrum silver, 4000 IUs of D3, 250mcg of B12 and 325mg of Ferrous Sulfate.

Not a lot of calories for sure but I function very well gardening walking about three miles a day with my dogs. I will nap for an hour and a half in the afternoon. my body has adjusted to this regimen. I eat no candy or sweets of any kind. I absolutely don't ever have a soft drink or fruit juice or milk despite my other dairy. I eat no processed foods. I occasionally will eat other seafoods as shrimp.
This may sound very dull but fortunately for me I have never been that big on sweets although I did used to love when much younger a Coke and a Hershey's chocolate bar. What i have learned is the body adjusts and after a while the thought of some of the "bad " things one used to eat are totally unappealing.
And I do get an octreotide injection every four weeks.
There is no way of knowing which of these things is most effective but I do believe strongly in few calories, plant based diet and seafood. Oh and I rarely have any alcohol. In the last five months I have had one glass of wine (wife's birthday), one glass of champagne (New Year's) and a small margarita (our anniversary). That is it. God bless you and help you. Oh, one last thing--I have worked exceedingly hard to not let anything stress me, even this situation. I have learned to roll through life now as if I am floating on a raft down a calm river, despite this health issue. I think letting oneself get stressed hurts our condition.

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Thank you!! Be well!

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This is a really tough one. I think I would wait until you have your appointment with Mayo Clinic. These are the professionals who deal with these problems every day, and have the very latest information on treatments. My husband developed Prostate cancer and had it removed. There were no signs of lymph node involvement and yet shortly after the surgery he developed a small cancer in his hip. He had radiation to the hip and went to the University of San Francisco for a consultation. They suggested he have monthly infusions of KETAKONASOL (hope I spelled that right) This is a medication used for toenail fungus. He never had another bone metastases.
Who would have guessed? So my best advice is to try to calm down a little, find something that will give you great pleasure. This is a time to do all those things you have thought of doing all your life, visit your best friend, see your favorite Aunt, share happy times with these people and believe the Doctors will have an answer for you. Remember life is good, and God is sitting on your shoulder speak to him occasionally.
GINA5009

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I was diagnosed with net cancer December 2020. Originated in small intestines and spread to liver. MRI showed several, like 25 to 30 small tumors. Doctor started me on sandostatin lar to help with severe diarrhea and flushing. That was it for the first year and a half, although I did go thru 3 embolizations to cut the blood supply to the larger tumors. In July of 2022 a few new ones showed up on CT Scan and I was put on Everolimus 10 mg which I waited to take in October, because of the side effects. Not bad until 2 months into the medication, they lowered the dosage to 5 mg and started taking it February of 2023. Again side effects kicked in 2 months, I haven't been able to eat a lot of foods because of the terrible after taste. This is suppose to be a slow growing cancer and a few keep getting larger so April I had what they call Y 90 procedure done and if I could go back in time I would have insisted on them doing the embolizations again. I got terribly sick from the protecting liver and stomach pills they wanted me to take for preventive purposes which I not told to me before the procedure. This is a procedure they now like to do instead of embolization. If I had known about the strong medicine after procedure and the possibility of liver failure (liver failure I was aware of) I definitely would have stuck with the embolizations. I see cancer doctor on the 17th and procedure doctor on the 24th and I am hoping for some answers, other than everyone is different and I can't get a prognosis either. First time I met with my cancer doctor she informed me that this is a slow growing cancer and that I have 20 years. Not sure what to believe anymore. I'm seriously looking to just taking the monthly sandostation lar injection for awhile and get another PETScan done ... I had my Last PET scan done June of 2021. I have had several cats and. A little worried that your CT scan didn't reveal what the PETScan did. Basically the last year has been extremely awful for me.

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@tomrennie

@helloitsme I am sooo happy that you get to visit with Dr. Sonbol on the 25th. If you have any questions prior to your appointment, please ask. Do you have any other appointments while at Mayo?

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Thank you. I’ve heard so many good things about Dr Sonbol and I’m feeling really comfortable with my decision to go to the Mayo Clinic. Yes, I have an MRI scheduled on the day before my appointment with Dr Sonbol. He ordered it to be able to see exactly what is going on in my liver.

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@helloitsme

Thank you. I’ve heard so many good things about Dr Sonbol and I’m feeling really comfortable with my decision to go to the Mayo Clinic. Yes, I have an MRI scheduled on the day before my appointment with Dr Sonbol. He ordered it to be able to see exactly what is going on in my liver.

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Looking forward to hearing about your appointment, @helloiItsme. I'm sure you will have a great experience at Mayo.
Will you keep posting updates?

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@helloitsme

Thank you. I’ve heard so many good things about Dr Sonbol and I’m feeling really comfortable with my decision to go to the Mayo Clinic. Yes, I have an MRI scheduled on the day before my appointment with Dr Sonbol. He ordered it to be able to see exactly what is going on in my liver.

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That is awesome. I trust that man with my life. Good luck with everything

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@helloitsme

Thank you. I’ve heard so many good things about Dr Sonbol and I’m feeling really comfortable with my decision to go to the Mayo Clinic. Yes, I have an MRI scheduled on the day before my appointment with Dr Sonbol. He ordered it to be able to see exactly what is going on in my liver.

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Dr Sonbol is my husband’s Dr and we both feel like we are in good hands with his medical knowledge and his caring manner. Good luck with your upcoming appointment

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@hopeful33250

Looking forward to hearing about your appointment, @helloiItsme. I'm sure you will have a great experience at Mayo.
Will you keep posting updates?

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Yes I will…this site is a Godsend for me. Y’all are so sweet, caring and informative here, and you make me feel very comfortable. Thank you for that!

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