Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Yes. I was diagnosed with tumours on my lung 7 years ago. They were watching them for years . Last year one started to grow and they suggested a lobectomy on my right lung . Had it done last August . I had it done with pin holes in my back as opposed to being sliced down the front ( robotics ). Recovery was quicker and I was out and about in a week . The initial surgery is uncomfortable as is the first few days . The chest pain from the chest tube lasted awhile , but the surgery is definitely worth it. Good luck

Thank you so much. Meeting with a surgeon today so your input could not have come at a better time.

If you wish you can private message me directly. I did a lot of research on this . I went through it and I am now on a cruise in the Mediterranean enjoying life, Wishing you best of luck. Please feel free to write me

I was diagnosed with large cell NETs a year ago. Unfortunately mine was determined to be inoperative by the tumor board.

I endured radiation and chemotherapy for a few months before starting what will be a lifetime of monthly lanreotide injections.

The treatments have reduced the tumors and the injections are keeping the cancer dormant at this time.

I now have a different perspective on life as every day is a blessing.

I am fortunate to be surrounded by a strong family circle a few solid friendships. My days now consist of new new goals and ambitions.

My life has slowed considerably and it’s taken some getting used to. Where I used to travel the country weekly I am now keeping closer to home.

Fatigue, dizziness, and depression are all part of my new normal. My medications, therapies, and exercise help fill in the gaps. I’ve also taken up playing the guitar and doing meditation.

I believe that staying focused and engaged is best for me. One of my biggest challenges have been realizing I can no longer do some of the things I was able to due before the treatments.

I attribute part of this to the cancer, part to the treatments and part to aging.

My future is bright as I look forward to getting in some traveling again once I get used to the scheduling.

Be blessed in your journey
CEB

@jogessert I’ll add my welcome, too. You may also be interested in this related discussion:
- Newly diagnosed-Primary Malignant Neuroendocrine of Lung https://connect.mayoclinic.org/discussion/newly-diagnosed-primary-malignant-neuroendocrine-of-lung/

@rogo, it is kind of you to offer your personal email. Because Connect is a public forum, we recommend using the secure private messaging function to exchange contact information. However, I would like to underline how sharing in the forum helps benefit many members, as well as get perspectives of fellow members and their experiences.

@jogessert, what questions have you prepared for the surgeon?

As this is all so very new to me, my daughters and I have a list of questions regarding everything from surgery vs. treatment and prognosis as well as probability of reoccurance either in lung again or elsewhere. The oncologist I saw suggested that surgery was the only option, which I really am set on a second opinion.

Accidently ran across this site and it has been so informative. Thanks to all

Thank you for sharing your journey. I wish you blessings in your daily life.

Know that surgery is considered the “gold standard” treatment for lung NETs. You want it out of your body before it has a chance to metastasize.

You will want to bookmark
http://www.carcinoid.org
And
RonnyAllan.net

For a deeper dive into this cancer.
My radiologist calls this the “lazy” cancer. I found that to be somewhat comforting.

Continue Blessings
CEB

Hi @jogessert

I met a lady through LACNETS.org that had a single 9 cm lung carcinoid removed 10 years ago (not sure if typical or atypical) and has not had any other issues since. They removed the lobe it was in. She didn't have any resulting respiratory issues from it. She has continued to have annual scans. Great success story and I believe she was 70 when she had the surgery. I pray that one and done success will be the case for you as well.

I have low grade, typical, neuroendocrine carcinoids, but too many (50+) to remove. They did microwave ablation on the largest one (2.6 cm) to destroy it so it wouldn't metastasize. They are keeping tabs on all the others and will do ablation again if any others suddenly grow faster than the rest of the pack.

TY very much. Don H