Previous heart surgery & risks of surgery to remove lung net

It is good to learn that there are other options. I have been told that with a lung net as primary, chemo is not generally effective and radiation doesn't work very well either. . I find weighing risk/benefits of surgery sometimes difficult to do. Thanks for sharing your experiences

@aprils1957 I started off with Captem, capecitabine and temozolomide. I took it for 13 cycles which was about a year. I have been on a reduced dosage of capecitabine ever since. I was diagnosed in 8/22. The primary tumor location can vary treatment options, but there are only a few systemic options to my knowledge. Everolimus and Captem are two of them. Are you seeing a NET specialist?

@stephanieann Below is a link for some of the basics about neuroendocrine tumors from Mayo's website. There are treatment options. What risk/benefits of surgery are you working through? It really isn't an easy decision.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/diagnosis-treatment/drc-20465865

@tomrennie
Yes I am lucky to live in a city that has OHSU a teaching hospital and Dr Pegna is there-- a net specialist. I had a different oncologist not net special and had to change insurance companies to see him. Thanks for encouragement.

Has anyone had experience with PRRT? Most of my tumors are in my liver and I developed side effects to the oral chemo. MDA now recommending PRRT but I am concerned about the side effects of that.

@debbie4la
We have many members who have had PRRT treatments. I would like to invite @sophiarose @vinnie694 and @dbamos1945 to post with you about their experience with PRRT.

What side effects concern you the most?

@hopeful33250 nausea, hair loss and possibility of leukemia

@hopeful33250
Other than exhaustion and the hard time the nurses had finding my veins it was very uneventful
I did have to stretch my time between my 2nd and 3rd treatments because I was having an ongoing issue with my heart from taking Afinitor
I actually slept through the whole process because they gave me a major dose of Benadryl to ward off any possible side effects
Good luck

I had my Lutathera treatments last year, Outside of fatigue for a few days, I did not have any side effects. My condition is , Well differentiated,
 Grade 2
 Somatostatin-receptor positive (Krenning ≥3) .. Primary, small bowels and spread to my liver.. After 2 treatments, there were no new tumors and the existing ones had no growth.. After the 4th treatment, the smaller tumors were really not visible and the larger ones were shrinking.. I go for my 1 year follow up (May 6th) to see if the trend is continuing.. As far as Leukemia I believe the % was very low, like 1% - 2%.. I did have to think about that because after all I was lucky enough to be in a low percentage of people who have these Tumors, But with the faith I have in my medical team and God I went through with it.. Here is hoping you are at peace with what you decide..

@tomrennie My lobectomy surgery to remove the dotatate + typical lung net just got delayed. About a week before surgery I got a UTI, , lots of swelling of ankles, large unexplained weight gain. I understand it is not good to undergo major surgery if one already has an infection so I am glad my cardiologist recommended it be delayed. Symptoms went away after a few days. Doctors still trying to figure out what caused these symptoms. Lung net medical oncologist said it was not likely that NET caused them, I sitll need to have a CT heart angio scan with contrast to determine if there are any further issues that might make surgery risky. But now even that might be delayed because kidney values /labs are abnormal. Dye/Contrast can impact kidneys negatively. I am waiting to hear what doctors have to say about proceeding with the scan. My question: if a lung net has been slowly growing over the past 5 years does that generally mean that it will continue to slowly grow? Also when I asked my lung net specialist about microwave ablation as an alternative he just recommended surgery again. Have people had success with microwave ablation in removing or shrinking net tumors? Having a lobectomy might impact my quality of life due to heart issues and I am struggling between the "curative" surgery vs maybe an alternative that is less invasive . When I had the triple bypass and then serious complications (sepsis, puncture of my silicone implant from breast cancer and poor sternotomy healing) it makes me very wary of another major surgery. How do people weigh the risk/benefits in dealing with the treatments for NET's?