How do I know somatostatin is in my system?

I think you may want to reframe the question to “how do somatostatins work”. I am required to wait approximately 5 to 6 weeks between my monthly injections and PET scans to allow for the injections to clear my system prior to the scan. The radiologist tells me that this wait period eliminates the false positives to the NETs that would show up on the scan.
You may be able to find more information on this topic at Ronny Allan.net under the imaging tab.

Have a blessed day
~CEB

Hello @gmapam
I appreciate your question, but I don't have the medical background to provide an answer.

First of all, there are two different types of Somatostatin. Here is a link to an article from Cleveland Clinic describing this hormone. As you can see from this article, Somatostatin is a natural occurring hormone in the body, but there is also a synthetic version (as medication), used to treat different disorders, including NETs. I am unsure as to which of these you are referring to in your question.

Here is an article from the Mayo Clinc website regarding the PETSCAN Copper 64

As I'm not a medical professional, I think that this is a question best answered by your medical team. Have you discussed this with your oncologist?

@gmapam

Your NETs oncology team should be able to tell you. You need to have somatostatin receptors (SSTRs) for the Cu64 or Ga68 DOTATATE PET scans to be of value and identify NETs. I had the Cu64 PET scan and was told I do not have SSTRs so the scan was of no value for me and I will not be having more. I didn't ask, but I assumed that the known NETs were not even showing up on that scan and that's how they knew I didn't have the receptors. That's a good question to ask my interventional radiologist after my next CT scans, but that's not for two months.

I've heard varying stats, but most recently that about 50% of people with lung NETs have SSTRs. A higher percentage of people with GI NETs have SSTRs.

I don't have SSTRs so PRRT would not be a treatment option; however, I do take Octreotide (Sandostatin) injections every 4 weeks and it has really helped my respiratory symptoms. So even without the SSTRs, for some reason, they've found that enough sandostatin is absorbed to help with symptoms at least for DIPNECH which I also have.

Please let us know what your NETs team has to stay about your scan and SSTRs. Did they tell you that you would have more Cu64 scans in the future? I always ask for the report to be posted in my portal so I can read all the details. It helps me prepare my questions.

Thank you for your response. At the present time I don’t have a
oncologist. One of the questions I have for the dr today.

I hope your appointment goes well, @gmapam. If you are comfortable doing so, I'd appreciate hearing what your doctor has to say.

Good morning
The surgeon has very straightforward and honest. He said that surgery is the best option. I can also wait and watch for further growth. He has done over a thousand of NET lung tumors. He was also very informative and answered all my questions. I told him that I was getting a second opinion and he was fine with that. He did bring up the issue of aftercare out of area could be complicated. Having to go to LA if a problem arises. I’m going to keep my Cedar appt on the 22nd. If her recommendations are the same as the dr where I live, I will have my surgery here locally. I felt very comfortable with Dr Hayashi.
Have a blessed day 😊

You are approaching this with a good attitude, @gmapam. I'm glad that you are consulting with another doctor. It is great, however, that the surgeon you saw was so experienced in doing this type of surgery.

I would love to get an update from you after your appointment on the 22nd. Will you post again?

Yes, I'm also glad the surgeon you saw is so experienced with NET lung tumors. Experience is so important. I'm sure I mentioned before that I talked to a lady who had a very large lung NET removed (one lung lobe removed I believe) at Cedars 10 years ago and hasn't had any issues since. Surgery was her only treatment. She lives close to LA. She gets an annual CT scan that has been clear ever since. Prayers that it will be the same for you.

Yes I will😊

Hello
Well it’s getting close to surgery time 12/26 7:00am. Twenty three years to the day 12/26/2000 when breast cancer was removed from my right breast… still breast cancer free!!! There has been a discovery of a thoracic aorta aneurysm that shows to be four centimeters. Waiting to hear from any of the three drs the CTA w/ contrast was sent to see if this will affect my thorascopic lobectomy of the middle lobe of my right lung😵‍💫. This new discovery has started the roller coaster of emotions.