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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)Comment receiving replies
I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets and chemdectomas. I had partial lung resection biopsy and a 7" cancerous tumor was removed, with clear margins and no node involvement. I'm being treated at Moffitt Cancer in Tampa, FL.
I'm now in the stage of getting medical opinions on treatment going forward. So far, the recommended treatment is observation, worth scans every 3-6 months for the next 5 years. I'm skeptical, frustrated and frightened.
I'm 55 and this is my 2nd cancer. I had invasive breast cancer at 43. I've had bilateral mastectomy and radical hysterectomy, followed by hormonal treatment with oral chemo drugs. I took Tamoxifen for 5 years. Come to find out now that Tamoxifen is a known carcinogen.
I'm frustrated with the lack of treatment options that DIPNECH has, after having one cancerous nodule removed and it being a second primary cancer for me. Does anyone have any thoughts or experiences around any of this? I feel so overwhelmed, isolated and worried.
Replies to "I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets..."
@rachismarie
Sorry to hear about all you’re going thru. I understand how scary it can all be. What type of lung cancer do you have? DIPNECH can lead to lung NETs (neuroendocrine cancer) so is that what you have? I have lung NETs (typical carcinoids), breast cancer and DIPNECH. My DIPNECH is treated with monthly octreotide injections for 3.5 years now. Octreotide eliminated my 30 year long chronic cough, constant mucous and helped shortness of breath when walking. Felt like a miracle! It also can slow tumor growth. Mine were already growing do slowly it’s hard to tell about that. My story is all over the DIPNECH threads. Once you read through them, let me know if you have any specific questions for me. Prayers for you.
Connect
Hello @rachismarie,
I'm glad that you found Mayo Connect. We have a number of members who have dealt with DIPNECH and tumorlets. When you have a rare disorder, it is good to connect with others who have had a similar experience.
Here are links to those discussions:
--Dipnech on lungs - does anyone have
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
--Carcinoid tumorlets neuroendocrine tumor cell hyperplasia dipnech
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
In these discussions you will meet members like @californiazebra @hollywood817 and others who will be able to share their experiences with you.
As this is your first post, please share what symptoms led to this diagnosis. Were you having a chronic cough or shortness of breath?