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Prognosis for Metastasized NET
My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until his most recent pet scan last week the shot seemed to be holding the tumors "at bay". This recent scan showed growth of the 3 large tumors in his liver to have grown and the tumors have also spread to his other lobe. His oncologist said "the next line of treatment would be a chemo pill called Afinitor but since you're not having any carcinoid symtoms that is your choice as to if you wanted to take it". Then he said, "there's nothing else we can do". I asked him about surgery on the liver "debulking" and he said "bc is in the other lobe and he's having no symtoms there's no reason for surgery" and he went on to say "the liver only needs 15% to function". After much research is clear that his once slow growing tumors have moved into a faster growing disease. I can see changes in him, that being more trios to the bathroom with diarrhea and he's more tired lately. But for the most part he still goes to work and dies his normal activities. Bc I don't feel like we're getting straight answers from his Oncologist i would like a straight answer. Understanding that whatever is said is not in stone, and generalized. I know there is no cure, I know their treatment was to try to keep the tumors from growing and spreading but we are at a crossroads now where the shot isn't working. He has heart disease, with 3 stents, middle age, overweight and works in a high stress environment. All things that don't help with his disease. From everthing I've read approx 17% make it to the 5 year mark. I need some insight as to what to expect since he doesn't want surgery or to take the chemo pill. Will he start to decline? Am I correct in what I've read in his prognosis? Is he at the advanced growth stage? I'm a person who NEEDS to know and the Oncologist saying , that's all we can do says a lot. Any advise would be helpful. Thanks.
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Sandy, I can't offer any insight or information, but I can say that I am rooting for your husband, and for you, to find the best way through this. All of us who have had any sort of cancer, especially when we know some of those nasty cells still lurk in our bodies, wake up every day wondering what the day will bring in terms of our health. I know you wonder, too, about what the day will be for your husband. I hope he chooses the surgery, if that seems his best option, and that it does what it needs to do for him.
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2 ReactionsHi Margaret, every year my husband has a Dototate (sp?) PET scan. It is a more advanced PET scan that picks up smaller tumors and is great for NETs. My husband has 3 tumors in his liver and yes, they are cancerous. Bc there was change in this last scan and the tumors have grown, not a lot but enough and it's spread that's why the surgeon is recommending the surgery. If you haven't found a PET scan facility that has the Dototate PET scan I recommend you find one. And Oncologist who specializes in NETs would be aware of that scan. Make sure your Oncologist does specialize in NETS Not every oncologist knows how to treat them. Do research too. If you don't mind me asking, where did yours originate from? Or is everthing just in your liver? If just in your liver I would go to a liver specialist. We are be fortunate to have a great team. The surgeon and his partner are both Oncology surgeons who specializes in NETS. A CT scan with contrast will also show tumors but not always the small tumors that NETS produce. But at least it'll see a tumor. Then a biopsy would be necessary. Keep me posted. And I hope you get some answers. Hugs...I know it's scary. Right there with you.
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4 ReactionsThank you Giness for your kind words. Yes, it is scary esp when there is no cure and his cancer has already metastasized. But this is slow growing and with the surgery this will help keep his liver healthy. He's decided to have the surgery and as of now it'll be the end of March. We have some vacation coming up so he wants to wait until after that. It's not an urgent surgery so March is fine. He can plan with work and we can get our travels out of the way. And then he can focus on the surgery. He's still digesting all of this and I still think he's not realizing the severity of the surgery and what it will entail. And that's ok too bc of he did he may back out. Of course, if he did that's his choice. But I do beehive he understands it's time. He's not a talkative guy or emotional either. That's my dept. Lol For now I just need to focus on the holidays and our trip coming up. Then I'll go back to worrying. Thank again for your concern and respond.
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3 ReactionsHi, is there an option for immunotherapy?
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2 ReactionsMaria, have you discussed immunotherapy options for your particular type of NETs with your cancer doctor?
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2 ReactionsHi!! Thanks for your reply... it's not for me, it´s for my best friend. Her doctor told her she wouldn't give her inmunotherapy without chemotherapy. She already had chemo 2 years ago, and besides loosing her hair, lost her teeth,
As this tumors are very rare, there is very little experience and still experimenting.
I am from Argentina son many videos in Spanish. Doctors say Inmunotherapy gives better life quality and sometimes more chances more survival rate.
I am a Biologist and understood the videos. Hope this helps. Just wanted to know what the doctors say in the USA, I trust very much Mayo Clinic, CDC, NIH and NHS. Love to you all!
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3 ReactionsI found a great paper that helps understand the prognosis of NETs. It was listed in this comprehensive report. You might find some useful information here.
Ncib.nlm.nih.gov/pmc/articles/pmc7177196/
Lot to digest but very good info.
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11 ReactionsThanks for sharing. Sending Love to all from Argentina.
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5 ReactionsI have been dealing with carcinoid tumors for 19 and a half years and am a long time survivor. I currently have about five fairly manageable ones in that they seem to be dormant as far as growth-- in my liver(2), mesentery (2) and heart(1). I take LAR sandostatin every four weeks for the last ten years. I try to be proactive, as I see it, in managing what I eat or drink, with a diet which I think hinders tumor growth. This is my suggestion to your husband--do not drink any soft drinks or fruit juice like you get in a store which are loaded with sugar. In fact avoid sugar as much as possible, no candy, no sugar cereal(they almost all have it except for shredded wheat). Secondly cut your calories and lose weight that way. This is what I do almost daily--Two bagels with cream cheese and one cup of coffee. For lunch a can of sardines. For dinner a salad of peppers, cucumbers, tomatoes and apple and then a casserole dish with either pieces of chicken or salmon with a certain amount of pasta or with a rice/ quinoa combination. I also eat a cooked serving of broccoli or cauliflower or Brussel sprouts.
I don't drink or smoke and although 6'2" have my weight at 140 which is manageable. I can't say this works for everyone as each individual is unique but I believe it has helped me. The diet is fairly dull but I like living. I nap when I need to which is probably not possible for your husband. AND I have established in my mind habits to not stress about anything ( I think stress aggravates things). I take the approach when a problem comes up to just deal with it and not spend anytime brooding about it or thinking about it--to use that cliche---"just do it." As to the diet which restricts calories, I know all cells , both cancer and normal, need food to grow and reproduce and cancer cells need more. Oh and I limit fat intake considerably (avoid French fries and things like fast food hamburgers or processed meats). If one has to add more food do a form of protein or crackers. Most individuals don't wants to live with this kind of diet and their is no scientific proof that it works but I will be dealing with it in February for 20 years and my tumors are just there. ( I did have six lymph node tumors in my intestine that had to be removed some years ago because they were causing intestinal blockage). It was after that I got serious and restrictive on my diet. No guarantees on this but my tumors have stayed dormant(I have regular MRIs) AND I have no problem functioning in daily life. I hope this is of some help--good luck and God bless.
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6 ReactionsP.S. I was given 3 to 5 years initially. A lot of what oncologists say about carcinoid is educated guessing. AND there really is a lot of truth in the fact that each case is so individual. But initially I had three tumors in my liver and now there are two not growing. I don't know what the disappearance was about but I will take it.
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