Anyone with carcinoid tumors in lung and stomach?

I had been diagnosed with 2 carcinoid tumors ...one in the lower lobe and one in the upper. My surgeon would have had to remove my entire lung so my cancer team decided to do sbrt radiation treatment to both areas and treat with sandostation injections once a month. My ct scans (with contrast) show no evidence of disease and I feel good. Good luck!

Patti,
This as helpful. Stay well.
Thank you,
Emily

Hi, I was diagnosed with carcinoid tumor in my lower left lung, after ct scans, bronchoscopy and biopsy. I underwent a lobectomy of my lower left lung in September 20, 2023. Doing well, follow up with CT scans every 6 months for check ups, and continue monitoring other nodules on my right lung. I’m 74 yrs old. Good luck!

Diana,
Thanks for your response. I’ve been just hanging waiting to get information about diagnosis and treatment. The finding of the nodule in my stomach was just stated with no further comment but talk to your cardiac surgeon. We’ve never met but my appointment was delayed 2 weeks without explanations. Called the pulmonologist and left message about what was going on but no call back yet. The waiting is really difficult.

answer if I’m too personal.

your strength level? Are you on oxygen?

What was your lobectomy recovery like?

What was the time period between biopsies and surgery?

Where were you treated?

I live in Attleboro, MA. St Elizabeth’s Health center is where I’ve had the biopsies so far. I’m getting very good care there.

Good to hear you are doing so well.
Thanks
Emily

Hello @emilyfaith and welcome to the NETs support group on Mayo Connect. I can understand your questions and the need to learn as much as you can from the experience of others. When I first posted on Mayo Connect, I was facing my third surgery for NETs in the upper digestive tract. My journey began in 2003 with my first surgery, with my last surgery in 2016, and I'm still here and doing well. The support you will find here on Connect is invaluable. These folks know a lot about NETs from personal experience.

As this is a new diagnosis for you, I would highly recommend having at least one consultation (either a virtual or in-person consultation) with a NET specialist. These specialists are different from general oncologists and have a good understanding of the best treatment options. This will give you the best start to your treatment plan. The continuation of your treatment plan can often be handled then by your local oncologist under the NET specialist's direction.

Mayo Clinic has NET specialists at all of their three locations. Here is information on how to obtain an appointment, http://mayocl.in/http://mayocl.in/1mtmR63. If an appointment at Mayo is not possible for any reason, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. It looks like there are several NET specialists in the Boston area.

Many of us who have been diagnosed with NETs had no symptoms, but the NET was found incidentally during an exam or test for something else. As you are new to this forum, I was wondering if you had symptoms that led to this diagnosis?

Hi Emily,
My strength after the lobectomy was slow at the beginning. My surgery was September 20, 2023, and I’m back at exercising at least 2 miles in the treadmill in 1/2 hr. When I finish I’m a little short of breath, but ok. I considered myself an active person, but I have noticed I’m a little bit slower these days. I am not in oxygen, nor do I need an oncologist, or any additional treatments, since the carcinoid tumors had not spread, which I’m grateful for. The time between my biopsy and surgery was about one month, since I needed lab work, additional PETCT scan to ensure no surprises, and oxygen level testing. I only stayed overnight after the surgery, and had my follow-up appointment within 10 days after the surgery. Surgery was performed at St. Francis Hospital, Hartford, CT by Dr. Kachala. He is wonderful, attentive to your needs, compassionate, with a vast experience in robotic surgery (which is the way I went), willing to spend as much time with you as you need. St. Francis hospital staff is also fantastic! I will have CT scans every 6 months at the beginning to ensure everything is ok inside, and to monitor the other nodules on my right lung. My next appointment is in March 2024.
I am so grateful for this forum that Mayo Clinic offers because I am able to hear from others, their journey, and the opportunity to ask additional questions of symptoms we have.
Best of luck to you!

Diana,
I like hearing your good news. You sound healthy and strong.
Thank you for your response.
Emily

I'm 75 and diagnosed with neuroendocrine tumors (3) that have been there as much as 50 years (one calcified the size of an avacado) I've opted out of a complicated removal of my entire left lung, going with a homeopathic shotgun approach of 6 different products.

Hi Teresa,
Thanks to several NET sources I now know the importance of seeing a NETspecialist team. My interventional pulmonologist is now active in contacting a local NET specialist and insurance to arrange a type of scan that’s not available within my health network. I think this may be just the beginning of a thorough diagnosis.
Thank you all who have responded and provided support.

I'm so glad to hear that your pulmonologist will be working to contact a NET specialist and trying to get you an appropriate scan and treatment plan.

Will you keep in touch and let me know how you are doing?