Connect
Benign carcinoid tumor in bronchi tube
Hi I've been diagnosed with a benign typical carcinoid tumor in my bronchi tube in right lung was found when I went to A&E with pneumonia back in July of this year I've had 2 bronchoscopys 2 biopys which showed benign carcinoid tumor I was sent for ct scan mri scan and pet scan pet scan was clear I was put under general anesthetic as my lung specialist said he might be able to remove tumor by going down my throat instead of haven surgery but didn't work but he was able to take 40% of tumor out as it was blocking my air way that's how pneumonia set in the 40% he removed also came back benign carcinoid 1 lymph node was removed and checked also clear now I need surgery to remove the rest I'm so confused as doctor said its a benign tumor then Google is telling me it's a low grade cancerous tumor but doctor nor lung specialist said anything about cancer just said its benign doesnt benign mean non cancerous and can any one tell me how surgery went thank you bless you all xx
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
@tomrennie
Typical and atypical grading only applies to lung NETs. I feel like GI and lung NETs are apples and oranges with many differences so you need to read about each type specifically.
I just looked up grading for PNETs and there are 3 grades. Looking at Ki-67 alone, your 8% is listed as grade 2 (intermediate) which has a Ki-67 range between 3-20 so you’re closer to the lower end of that grade. Over 20 would be high grade. But there may be other factors in grading such as the appearance of cells. Read through any biopsy or surgical reports you may have and ask your oncologist next visit to verify your grade since your case specific info will be the most accurate.
-
Like -
Helpful -
Hug
2 Reactions@nannybb I've had 2 biopys which showed benign carcinoid tumor I've had 40% of tumor taken out on 5th of Sept this year also came back benign my surgeon rang me 2 weeks ago I've asked is it a benign tumor he said yes it's a benign typical carcinoid tumor which I googled and it said grade 1 this is why I've posted here to get help off these lovely people @tomrennie and @californiazebra thank you so much guys much appreciated
-
Like -
Helpful -
Hug
2 Reactions@jessie1990
Great news and that sounds right for typical lung NETs. They monitor with CT scans and those are quick and easy. After the first couple years you’ll likely only have an annual scan.
-
Like -
Helpful -
Hug
3 Reactions@nannybb my pet scan came back clear no other tumors or anything suspicious just the tumor In my bronchi tube it's so confusing a lung doctor rang me today told me there's strong evidence it's benign typical carcinoid and that once it's removed I won't need future treatment like chemo or anything like that just need regular scan to keep an eye for recurrance
-
Like -
Helpful -
Hug
3 Reactions@tomrennie
I agree about the second opinion with a lung NETs specialist while you wait. Not sure how hard that is in Ireland. I believe they’ll agree with surgery and then just monitor with scans, but they might have some valuable input on how to approach the surgery itself. My question to the NETs specialist would be, “Do they need to remove two full lobes or can they remove two partial lobes to preserve healthy lung tissue?” That answer is very case specific so they would need your records. It’s always comforting to have two doctors agree. Have you asked the surgeon how many lung NETs patients s/he has treated?
Great that you’ve been given a time frame for surgery. December will be here before you know it. Being young works in your favor for recovery. Yes, keep walking. I walk at least 2 miles a day and always have. It’s good for the mind, body and soul.
-
Like -
Helpful -
Hug
2 Reactions@jessie1990
Recurrence for typical carcinoid is unlikely so once you recover from surgery you can get back to enjoying a long life with your kiddies. 😊
-
Like -
Helpful -
Hug
3 Reactions@nannybb
PET scans are much more sensitive than X-rays. The PET scan would likely be where they saw the other tumors (or CT scan) but a PET scan looks at the amount of glucose each tumor is using as cancerous cells use more glucose.
-
Like -
Helpful -
Hug
3 Reactions@californiazebra I know that mine are a grade 2. It is listed as such in my reports from the beginning over 3 years ago. I didn't know lung NETs had the unique classification of typical and atypical. Thanks for teaching me that.
-
Like -
Helpful -
Hug
2 Reactions@californiazebra I agree with everything you said from the 2nd opinion to walking. I walk 3 plus miles 6 days a week. Most of the nearby trails that I like are that long, so it took me a while to build up the endurance to make it. I take a day off on chemo weeks. I need to give my body a chance to recover. My dog is not happy on those days haha. I actually just got back from my walk. I also believe that it is good for the mind, body and soul.
-
Like -
Helpful -
Hug
1 Reaction@tomrennie
Dogs are great for making you stay on track. I had 3 dogs in a condo with no yard so we walked several times a day. No dogs for 3 years now so it takes more self-discipline when I’m tired. Now I take my good camera with me to photograph the wildlife.
-
Like -
Helpful -
Hug
2 Reactions