Benign carcinoid tumor in bronchi tube

Also how did you find out it had spread to your bones

Was yours typical or atypical carcinoid

@jessie1990 I have one primary tumor in my pancreas that was about 8cm. It is called the primary because it distributes the cancer through your body like a good midfielder in soccer. I hope you are a soccer fan? A lot spread to my liver and pelvic bones. But, some also spread to my bones from my tibia to my skull. I found out where it all was with a pet scan that used a contrast called gallium-68 dotatate. It attaches to NETs, so the scan can show where it all is. I still get them. A biopsy showed how fast it grows using a ki-67 grading system going from 1 to 4 with a 1 being the slowest and 4 being the fastest. I am a grade 2. Please understand that I got really sick right before covid hit. It was very hard to see a doctor let alone go through the process to see a NET specialist. My specialist suggested that I had the cancer years before it was ever an issue. It seems that yours was caught early. Please don't be alarmed. I know that is easier said than done especially for us folks with a little Irish in us. I have been alarmed myself. Please keep asking questions. The only dumb question is the one not asked OK?

So you are a big city lass from Cork? I have a brother and sister that visited there years ago. They say that the city is beautiful and the people even more so. They felt like they were visiting family. My wife and I were recently discussing a trip to Ireland and Scotland. My last name Rennie is Scottish. I find it quite ironic that our paths crossed here.

@tomrennie I'm so sorry to hear that 🥰 I am a soccer fan manchester United is my team 😊 ya I'm so confused about all this to be honest.. ya ireland is a lovely place has so many beautiful places I'm a born and bred lass from cork 🤣 and I'm 32 years old and only visited cliffs of mohar like 2 years ago

@jessie1990

Cancer is often considered a chronic condition. I have had three carcinoid surgeries since 2003, when I had my first. Carcinoid tumors are generally slow-growing, but it is important to have regular follow-ups. As others have posted, it is essential to have at least one consultation with a NET specialist.

Are you considering seeing a NET specialist?

@jessie1990 Thanks for being sorry. I appreciate it. It has been an incredible learning experience not only physically, but also mentally and emotionally. Hearing that you have cancer changes a person. It is up to the person to choose to make that change for the better.

If you weren't confused, then I would think there might be something wrong with you. It is very confusing. I sense that you, like me, would rather watch the Red Devils destroy City at Old Trafford than learn about some obscure cancer type. But, here we both are. Let's try to simplify things a little. First, like @hopeful33250 suggested, seeing a NET specialist is important. It is a rare cancer that most oncologists know very little about or have forgotten what little they knew. Your treatment is best led by a doctor that lives and breaths it everyday. Second, get the best tests and scans to diagnose NETs. The contrast used in a pet scan is critical. The Gallium-68 is the most used contrast specifically for NETs. The result of the tests and scans are necessary to determine the best treatment possible for you. Third, get treatment. If surgery is the best treatment, get it done. If it is radiation, immunotherapy, chemo, or some other option, get it done. Don't wait like I had to. The bigger the tumor gets and the more places it spreads, the harder it is to treat. At your age, you have youth on your side. I was 56 when I got diagnosed. I just turned 60 this month. My battle is permanent. Try to limit that as much as possibly. Fortunately, you have already met two folks that really helped me when I got started. @hopeful33250 and @californiazebra are a wealth of knowledge and experience. There are others on here as well. I have learned more from them, especially how to approach things in the beginning and moving forward, than any medical professional has taught me. Lean on us. We have been there. We are here for you.

I was a big fan of Man U when Roy or Robbie Keane played for them. My saturday mornings are usually enjoyed watching the Premier League. It will be a tough match tomorrow against Spurs. I will be watching. I also have a been following a women's team. Recognize the kit? I might ask for some suggestions for a visit to Ireland. I hope that is ok?

@jessie1990
I want to note that after reading so many stories of both GI NETs and lung NETs that GI NETs treatment seems harsher and it seems it is more likely to spread than lung NETs, at least that typical carcinoids in the lungs. Those seem the least likely to spread although not unheard of.

Over 50 nodules were first seen in my lungs in 2008. Also, based on symptoms I’ve had DIPNECH for 35-40 years so the nodules were around then. DIPNECH is super rare with 300 documents and is multiple benign neuroendocrine nodules that can progress to NETs like mine did many many years ago. While I have advanced DIPNECH, after all these years my very slow growing atypical carcinoids are still stage 1 because they have never spread outside my lungs. I had the largest one 2.6 cm destroyed with microwave ablation because it was growing faster than others

@californiazebra
(Hit send by accident) the large 2.6 cm tumor was more likely to spread. I do take octreotide injections every 4 weeks to slow growth even more and control my respiratory symptoms. Very tolerable.

I talked to a lady that had a lobe removed with a 9 cm typical carcinoid and in 10 years never had another one appear. She just had a CT scan each year. I lost touch with her. She was 80 when we last spoke. Many people are one and done for lung NETs. Assume your case is one of those. Even if not, typical lung NETs is very manageable and you will be around a long time. I feel lucky that I have atypical carcinoids and not the common NSCLC lung cancer my young non-smoking brother had. Our cancer journeys have been nothing alike. Mine is so much easier and I’m still here. A NETs specialist can help you be sure you are not overtreated by someone who only treats common lung cancer. I truly believe you will get through this and live a long, happy and fruitful life.

@californiazebra
A couple typo corrections in my message above. That should have said I have typical carcinoids (not atypical which is worse). And DIPNECH should be only 300 documented cases.

@californiazebra thank you so much for your message ❤️ when I had my first surgery to remove it I asked what size it was my lung specialist said it was a chick pea sized tumor but over where its sitting in my bronchi it's in-between to lobes of my lung so more then likely 2 will have to be removed I got 40% removed on 5th of Sept I'm still waiting on more surgery lung doctor said he can't give me a time or date so anxiously waiting for this to happen 😢