Any advice for someone recently diagnosed with NETs?

Hi @annamill
Sorry to hear about your father's illness. If it helps, I was diagnosed with multiple pancreatic NETs as a result of MEN1 about 6 years ago and ended up having a total pancreatectomy in 2019. Since then, I am on an insulin pump and pancreatic enzymes and have managed fairly well with A1C's in the low 6's. I do have to be mindful of the fat content of food with the enzymes (Creon) but all in all it has been manageable. My endocrinologist has been very helpful in working with me to tweak my pump settings over the years to avoid highs and lows and I would recommend a pump/CGM combo if needed for your dad. Take care and God Bless.
- Matt

Thank you very much for your reply. I am happy to hear that everything was well in your case.
My father live in Serbia and I think that the surgery will be the classical one. The postoperative course is the thing that concerns me. How long does it take for you to start eating and to have normal Gi function? Do you have to take pancreatic enzymes? Do you have any restrictions in diet now?
Best regards and all well,

Ana

Hi I had my surgery in Aug 2024 about the same I am 73 I had a robot assisted in Phoenix with Dr Brinks .In hospital two and half days /five small openings one medium one to remove spleen. Recover Gi upset was worse eat light food and My pain was not bad go slow walking .
I drove my self to follow to see Doctor over100 miles in 6 days .Try to find this kind of surgery small the much faster recover Best wishes

No evidence of metastasis, and surgery scheduled for January 29th. I feel extremely fortunate. Thanks for checking in.

My father is diagnosed with NET in pancreas. He is 79 years old and he is proposed the surgery, distal pancreatectomy with removal of the spleen. I would to ask if someone had the same surgery, what is the post operative treatment and life after the surgery. The tumor is well differentiated and is not spread.
Did someone started with somatostatin treatment instead of surgery?
Thank you for your answer,

Best regards,
Ana Milojković

@pammy229, the waiting is so hard. How did the scan go? Do you have a follow-up soon to discuss the results and a treatment plan? How are you doing?

Thank you for sharing your story. I hope your doctors can find a way to help you manage your pain. My doctors were shocked that I had a normal lung function on all of the tests, as my lower lobe had collapsed. In my case the middle lobe on the right grew larger and compensated for it; maybe that can happen to you with time. The shots sound encouraging (thanks for pointing out possible side effects). Best of luck to you!

I couldn’t imagine having 50 NETs! I’m glad you’re doing okay 35 years later, and thank you for sharing your story; it does give me comfort! My husband’s last radiation treatment for throat cancer occurred two days before my diagnosis. I think going through it with him has also helped prepare me. God bless you in your journey.

Hello

I have a couple of NETs tumors. One in the lung one in the mediastinum. There were other “hot spots” on my scan however they only biopsied the 2 largest tumors. That was August of 2022.

And yes the PET scans were done the Mayo Clinic in Phoenix Arizona.

Shortness of breath and chest pain were my symptoms and still are. I believe it’s related to carcinoid syndrome. Fatigue and stamina are my biggest physical limitations.

The primary treatments were targeted radiation combined with a carboplatin-etoposide chemotherapy. This reduced the tumors by 50%..

After primary treatments ended my new treatment is now monthly injections of Lanreotide followed by PET scans every 6 months.

From diagnosis to treatment it took 16 months total before I gained my energy back. The Lanreotide injections help but I am still not without pain. So that is my new normal.

Some foods exacerbate my discomfort and I have found that I need to eat smaller portions.

As of now I am still gaining strength and getting around much better. I believe I just completed my 6th scan and no significant growth has been noted.

I recommend you look up and follow the NETRF.org site for NET research if that is something that interests you.

The lanreotide is not without side effects. Hair thinning and thickening of the heart valve are associated with the treatments. As is blood sugar swings.

I have learned a lot by watching neuroendocrine cancer awareness network on YouTube.

Hope this helps. And don’t forget to give yourself grace.

Be blessed
CEB1

Hi @pammy229
I’m glad you decided to go to Mayo and will undoubtedly be hooked up with a NETs team of doctors. That’s important.

Interesting about punching a hole and your lung lobe inflating. Surprised you didn’t have shortness of breath.

The fact that you’ve had the tumor since 2015 or before should reassure you that it’s slow growing. Good news! Since you weren’t short of breath with that lobe collapsed, that should be reassuring that you’ll likely be fine if they decide to remove that lobe along with the tumor which is common for those who have a single tumor.

I have over 50 NETs tumors across both lungs because I also have DIPNECH that causes that. Those who have a single tumor can probably offer their more relatable case histories similar to yours. I have too many to remove so I had the largest tumor 2.6 cm destroyed with microwave ablation and I’ve been receiving monthly octreotide injections for 4 years to control symptoms and slow growth even more. So far so good. My 50 were first seen but not diagnosed in 2005. Based on symptoms, I’ve had them at least 35 years so that should bring you some comfort.

Let me know if you have any specific questions. Good luck on the 2nd!