Neuroendocrine tumor in small bowel with lymph nodes involved

Hello @queensmom,

I feel for the concerns you've expressed. I might add that many of us have these same fears. Every ache or pain can remind us of our cancer history and take us to a place of worry.

I've had three surgeries in the duodenal bulb for small NETs lesions. I'm always surprised when it happens, but I have surgery, and then all is well for a while. Like you, I have never been a candidate for chemotherapy, I just have the surgeries and have follow-ups as the doctor recommends. Right now, I'm having upper endoscopies every other year and an MRI on the years in between the endoscopies.

Please do your best to relax as much as possible. Find something to do that can take your mind off of your worries. If it would help you, try to get a second opinion, so you can feel more comfortable with your current doctor's recommendation.

What type of follow-ups is your doctor recommending? Can you get a second opinion to help assure you that you are getting the right treatment?

Thank you so much for your kind words. That means a lot to me. Yes, i already have a second opinion at Dana Faber, which i have an appointment next week. My previous doctor recommended screening MRI every year.

I was diagnosed with carcinoid in March 2018 when I, too, had a blockage in my small intestine. Although that was removed along with 10” of my intestine, there are quite a few scattered throughout my body that could not be. In April that year I started on monthly injections of Sandostatin. However, in July 2019 I had another blockage, this time in my large intestine so they removed 11”. In March 2020 I went to Mayo in Phoenix for a consult for PRRT treatment. But the pandemic hit and I waited until April 2021 to start the treatment. In that time the lesions had grown. I started the treatment that month, completing it last October. A PET CT in March this year showed everything is “stable”. I continue the monthly injections, watch what I eat, and exercise 4-5 days a week. I would encourage anyone with a new diagnosis to do your own research about your diagnosis, and find what works for you to keep you healthy mentally and physically. NETS are slow growing. They are rare so it’s important to find doctors who have knowledge of and experience dealing with them.

Hello @phyllisden and welcome to Connect. I appreciate you sharing your journey with NETs with our discussion group. You have made some good decisions such as realizing the importance of finding good doctors who have experience in this rare disorder. You obviously done your homework and you have some good results.

Will you share as you continue to pursue treatment?

Hello @queensmom,

I'm glad to hear that you are pursuing a second opinion. I'd like to hear how you are progressing.

Will you provide an update after your appointment at Dana Faber?

I can but right now there are no changes in the near future. The only recent change was increasing the dosage of the Sandostatin from 20 to 30 MG due to some increase in symptoms.

Of course i will provide an update step by step. I am happy that i find people now that we can talk. I have so many things going on and i feel like am overwhelmed and don’t know what to do. My heart is heavy , filled with sadness and sorrow. I just had a baby this year, she is only 10 months now, and this happened, i feel like is not fair for her to go through this. 🥹

Hello,
I have a constant headache and coughing since after my small bowel resection. Is it normal? Does anyone experience headache everyday? Is headache one of the symptoms of NETs ? Any help. ? Thanks

I have lung NETs while headaches can be a symptom for me I believe my headaches are a result of my medications. I was told one of the characteristics of the cancer is that typically results in brain tumors.

Having migraines that are off the pain scale is unbearable at times. I’ve never experienced anything like it before. But I take comfort in knowing I’m in good hands and getting the care required to fight off the disease, or at least prolong the inevitable.

I requested a brain scan right before Christmas and was told yesterday I’m clear if any tumors. Knowing that was the best Christmas news I could have.

Now that I know it’s the medication I can refocus on diet snd exercise. This should help control the migraines. Or at least that is want to believe. I get easily fatigued at times so I can’t stray too far from my home. Today my goal will be a 1 mile walk.

I will pray your symptoms are due to your medications. I would keep a log of time, date and severity. Work with your doctors to try and find alternatives. Medical cannabis came up in my group therapy where others recommended it as a way to minimize some of the discomforts you may be experiencing. I’m going to try it for my headaches.

Best of luck
CEB

Thank you