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Anyone heard of neuro endocarcinoma?


Dona

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Hi group

My pulmonologist tells me that preliminary biopsy may not show SCLC,  but neuro endocarcinoma.

Has anyone heard of this? I'm really afraid to go to Dr Google.

Thanks in advance!

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Hi Dona, I think it's "neuroendocrine" carcinoma.  I think there's at least one person on these forums with that diagnosis and I hope you'll hear from them.  Also, the main Lungevity site has some entries on this cancer. ( I didn't read them all, but just noted that they're there. You can google Lungevity.com and then put "neuroendocrine" in the search box to find the. This is a pretty rare cancer and I know how hard it is to find any  info, much less reliable up-to-date info, about these types. Unrelated to my lung cancer, which was a garden variety, I had a  clear-cell cervical cancer (stage 3). This is so unusual that there were literally no published studies of it at that time. However I got a second opinion from an oncologist who had some clinical experience with it. I was treated according to her recommendations and  I've been NED for almost 10 years. So hang in there and get the best advice you can!

 

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Thank u so much for responding so quickly, Bridget. This cancer trail has so many twists and turns. Will definitely ck on the lungevity site to educate myself. I also have a consult with an oncologist tomorrow morning, and I hope I will glean more info at that time.

Thx again.

Dona

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Hi Kathie

My visit with the oncologist has twisted my mind and I can't help feeling I'm back at square one.

As a reminder, my July 29 bronchoscopy "bedside" biopsy came back SCLC.

Then a couple of days later, pulmonologist states after additional slide stains, it is presenting as neuroendocrine carcinoma. 

Now a couple of days after that, the oncology virtual visit happens and after additional biopsy stains,  the onco states both SCLC and NE carcinoma are coming back negative. We are still awaiting biomarker results and onco had me report to the lab yesterday for blood biomarker draw, as he would receive that quicker.

As you can imagine, I am so confounded and feel like an emotional yo-yo. Gloom doom, hope, more unknown, etc.

The onco called my case an "oddball" one bc they cannot definitively tell me what cancer I actually have. My pulmonologist took my case to the UCD Tumor Board on Wed where a multidisciplinary panel of about 25 doctors tried to assess the cause/type. Have not received any feedback yet.

They have intimated that perhaps it's a uterine met from a previous gyno cancer in 1999, but thought that was highly unlikely. He said he's only calling it LC because it appears to have originated in the lung.

So it's hurry up and wait. I have a PET next Wed and meet with a different onco Thurs. I hope to have more concrete knowledge at that time. 

I have stopped coughing up blood since the bronchoscopy and the cough has subsided, but the shortness of breath seems to be increasing.  I am using an inhaler to mitigate the breathing issues.

Thank you for checking on me, Kathie. How is your husband doing? I'm really curious to hear how he's holding up, as well as you!

Dona

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I’m so sorry Dona.  Getting information, and very scary information at that and then still not knowing…. I pray you are able to get a definitive answer soon and onto treatment.   Has the inhaler worked for you?  My husband tried albuterol but it didn’t seem to help him very much.  He is also trying Flonase for some possible allergy congestion.  

He just had his Immunotherapy treatment (Tecentriq) on Wednesday and is feeling good.  This was the first time he got a call about his blood work after treatment though.  His potassium is low so they prescribed a supplement for the next 10 days.  We also found out his TSH # has been steadily going down at each treatment for the last few months (unknown to us - it came across from lab work sent separately!)   I had read something on this forum about Immunotherapy having that effect on Thyroid.  I will have to research more.  

Please keep us updated on how your tests go next week.  Will be thinking of you!

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  • 2 months later...

The thing you will learn is that no two treatments are exactly the same, which is as it should be, because we are all different. You can try reading more on cancer.net or use to get personalized treatment recommendations. Fingers crossed on the HER2.

Edited by Tom Galli
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