Hello @ginnym3 and welcome to the NETs discussion on Mayo Clinic Connect. I can certainly understand you when you say, " I’m feeling lost and confused." As a 20-year survivor of NETs (I had my first surgery in 2003, then again in 2005, and my last surgery in 2016). I can easily remember the confusion that surrounded my diagnosis. In 2003, there was little in the way of support groups or good information regarding neuroendocrine tumors (NETs). I also felt lost and confused.
As you are just beginning your journey with NETs, I would encourage you to learn as much as you can about this rare form of cancer. If you google neuroendocrine tumors, you will find websites like Mayo Clinic, and The Carcinoid Cancer Foundation who will provide you with lots of good information. Knowledge is one of the keys to being proactive in your treatment.
I would also suggest that you find a NET specialist. Not all oncologists are trained in treating NETs. Mayo Clinic has some excellent NET specialists in all three of their locations (Rochester, MN, Jacksonville, FL and Phoenix, AZ). If you would like to get a consultation with Mayo here is a link with information about appointments, http://mayocl.in/1mtmR63
If for any reason you cannot get a consultation at Mayo, here is list, from the Carcinoid Cancer Foundation, of NET specialists worldwide.
--Find a Doctor https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
If you are comfortable sharing more, I would be interested in knowing where your NETs are located, what symptoms led to the diagnosis and what treatment(s) have been suggested?
Thank you for reaching out. I am a patient of Dr. Jason Starr at Mayo in Jacksonville. My primary tumor is in my small intestine but my cancer has metastasized to my liver, peritoneum, lymph nodes, with a few spots elsewhere like my pelvis. I had no symptoms of the cancer to bring me to the hospital. It was actually excruciating back and leg pain (that was thought to possibly be kidney stones) that brought me to the local ER, and when they did a scan to try to figure out the leg pain which was radiating down the front of my leg too, the scans showed the cancer. That was mid-January. It took a while and a few different tries to get a biopsy that confirmed the NET diagnosis but that all happened by mid-February. I am presently on 'watch' with my next scan in 4 months which will be mid-July. Dr. Starr rated my NET a 1.8 out of 3 at this point in time despite the metastases; he is not recommending starting any treatment yet, nor any surgery either. That is confusing too.
I’m being treated at Mayo Jax. Was diagnosed with NETs (Carcinoid Syndrome)December 2022, started in the small intestines and metastasized to the liver. Currently being treated with Lanreotide injections. Where is the tumor.
Interesting. I too am at Mayo JAX. I wonder why you are being treated for your NET Carcinoid syndrome that started in the small intestine and metastasized to the liver when my diagnosis is basically the same but I have more metastases (peritoneum and lymph nodes as well as small intestine and liver) and I'm on 'watch and wait.' I don't get it. How are you doing with the injections? There's so much to figure out and learn!
Interesting. I too am at Mayo JAX. I wonder why you are being treated for your NET Carcinoid syndrome that started in the small intestine and metastasized to the liver when my diagnosis is basically the same but I have more metastases (peritoneum and lymph nodes as well as small intestine and liver) and I'm on 'watch and wait.' I don't get it. How are you doing with the injections? There's so much to figure out and learn!
I’m still learning too, as far as the injections so far no side affects, the real test will be if the injections are working.. I don’t understand watch and wait?
I’m still learning too, as far as the injections so far no side affects, the real test will be if the injections are working.. I don’t understand watch and wait?
Thanks. I'll ask my oncologist what the difference might be between you and me (our diagnoses and treatments). I will be going for a scan again after 4 months from my last appointment with him, so that's mid-July. He said he would evaluate then and see if any of the cancer has progressed. I don't know... strange. Thanks again, and I'm really glad for you that you don't have side effects yet and I hope you see results!
Thanks. I'll ask my oncologist what the difference might be between you and me (our diagnoses and treatments). I will be going for a scan again after 4 months from my last appointment with him, so that's mid-July. He said he would evaluate then and see if any of the cancer has progressed. I don't know... strange. Thanks again, and I'm really glad for you that you don't have side effects yet and I hope you see results!
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Had my 2nd injection April 13th will have them every 28 days, June I have a follow up MRI to see if the shots are working. Do you live in Florida?
Thank you for reaching out. I am a patient of Dr. Jason Starr at Mayo in Jacksonville. My primary tumor is in my small intestine but my cancer has metastasized to my liver, peritoneum, lymph nodes, with a few spots elsewhere like my pelvis. I had no symptoms of the cancer to bring me to the hospital. It was actually excruciating back and leg pain (that was thought to possibly be kidney stones) that brought me to the local ER, and when they did a scan to try to figure out the leg pain which was radiating down the front of my leg too, the scans showed the cancer. That was mid-January. It took a while and a few different tries to get a biopsy that confirmed the NET diagnosis but that all happened by mid-February. I am presently on 'watch' with my next scan in 4 months which will be mid-July. Dr. Starr rated my NET a 1.8 out of 3 at this point in time despite the metastases; he is not recommending starting any treatment yet, nor any surgery either. That is confusing too.
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1 ReactionInteresting. I too am at Mayo JAX. I wonder why you are being treated for your NET Carcinoid syndrome that started in the small intestine and metastasized to the liver when my diagnosis is basically the same but I have more metastases (peritoneum and lymph nodes as well as small intestine and liver) and I'm on 'watch and wait.' I don't get it. How are you doing with the injections? There's so much to figure out and learn!
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Hug
1 ReactionI’m still learning too, as far as the injections so far no side affects, the real test will be if the injections are working.. I don’t understand watch and wait?
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Helpful -
Hug
2 ReactionsThanks. I'll ask my oncologist what the difference might be between you and me (our diagnoses and treatments). I will be going for a scan again after 4 months from my last appointment with him, so that's mid-July. He said he would evaluate then and see if any of the cancer has progressed. I don't know... strange. Thanks again, and I'm really glad for you that you don't have side effects yet and I hope you see results!
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1 ReactionBy the way I am also seeing Dr. Starr..
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