Mayo Clinic Connect
I am wondering what followup testing is done after surgery for lung carcinoids. Also is there a NET specialist in Philadelphia?
Liked by Teresa, Volunteer Mentor, John, Volunteer Mentor
Hello Faith (@collielady), welcome to Connect. You’ve come to the right place to ask questions and find out what others have done for treatment of similar health issues. I’m not familiar with followup testing after surgery for lung carcinoids but thought I would jump in until others with better information can join in and offer what they know. The American Cancer Society has a little information that may be helpful here:
Did your doctor team or surgeons discuss any follow up treatments with you that you can share?
Also, I would like to share one of my favorite tools for finding information including recent articles, testing, treatments on pretty much anything. Google Scholar (https://scholar.google.com/) is a great place to do your own research. It really helps to be your own advocate – and that’s what you are doing here on Connect. Here’s an example – I did a search on Google Scholar using your phrase “follow up testing after surgery for lung carcinoids” and it returned the following results. I also clicked on 2017 at the left to get the most recent results.
Keep asking questions and learn as much as you can about your health concern! You really are your best advocate.
Liked by Teresa, Volunteer Mentor
Hello Faith, @collielady
Carcinoid specialists are few and far between, however, here is a carcinoid website https://www.carcinoid.org/ where you can find doctors who have this speciality. From this website there appears to be some physicians listed in the Philadelphia, Pittsburgh and Hershey areas.
While I know you are looking for someone in the Philadelphia area, if you need a good second opinion, you can always contact Mayo Clinic in Minnesota. They have some great oncologists there who work specifically with NETs (they are also listed on the website mentioned above).
Most of our members have NETs in the GI tract, however, one of our members, @dzerfas, has had lung NETs, I hope she will join this discussion with you.
Have any follow up treatments/testing been recommended to you thus far? How are your symptoms now?
Liked by John, Volunteer Mentor
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Thank you, John. I will do more research.
Actually it is my sister who had the surgery for lung carcinoid. I have become the family advocate for her and my nephew with Merkel cell carcinoma (a rare NET) and now another sister’s boyfriend who has an autoimmune thyroiditis which causes pernicious anemia and gastric atrophy and has higher chance of stomach carcinoid.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
Faith (@collielady) – Thank you for being the family advocate. It is no easy task and you are a blessing to your family for helping them. I’m really glad you’ve found Connect and hoping you find lots of help and information here.
Hi Teresa — thanks for your reply. My question about followup care was for my sister. She is getting CgA checked every six months. From what I read this marker is not as specific for pulmonary tumors as it is for GI tumors. Just hoping she is getting best advice. Can I email @dzerfas from here?
Hi Faith @collielady
Yes, if you want to contact @dzerfas just put that designation at the front of your message in a Mayo Connect reply box and it will get to her that way.
Hi Faith @collielady
I was just wondering if you have found any more information on following up on lung carcinoids? I hope that your sister is coming along. Does she have scans periodically?
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