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My mother was diagnosed with nsclc but they called it an aggressive type ..neuroendocrine..is anyone familiar with this? Thanks from a newby.
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My Mother was Diagnosed with...
- By jazzloversinc
- Posted July 1, 2009 at 5:25 pm · 9 replies
- In Non-small cell lung cancer - General
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- By LTLCS
- Posted July 1, 2009 at 5:45 pm
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I believe we just had another person as the same question you area asking. I do know this is a rare type of cancer. I will direct you to Dr. Jack West who can answer your question at: www.cancergrace.org
Here is something I pulled up about "Neuroendocrine" An overview of neuroendocrine tumours
Neuroendocrine tumours are rare. They start in neuroendocrine cells - these are specialised nerve cells that produce hormones. Neuroendocrine cells are part of the endocrine system, which is a network of glands in the body. The glands produce hormones.
Hormones control many of the body’s functions by controlling the levels of particular chemicals and fluids in the body, and they help us respond to changes in our environment.
Neuroendocrine tumours occur most commonly in the digestive system but can occur in other parts of the body. They can be non-cancerous (benign) or cancerous (malignant).
Some neuroendocrine tumours produce hormones which can cause particular symptoms, such as diarrhoea, flushing of the skin and wheezing. Tumours that produce hormones are called functioning (hormone-secreting). Tumours that don't produce hormones are known as non-functioning (non-hormone secreting).
Cancerbackup has information on the following types of neuroendocrine tumour:
- By Suzanne55
- Posted July 2, 2009 at 8:19 am
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I too was diagnosed with neuroendocrine lung cancer. From what I've read it's very rare, less than 2% of lung cancers are NE, it's very aggressive, it has a high rate of recurrance,doesn't respond to TX very well and it has a poor 5 year survival rate. I've had a lobectomy done 1 month ago and I meet with the Oncologist in 2 weeks to start on chemo. I'm a stage 2A and this diagnosis has caused a whirlwind of emotions. Unfortunately the voice of death speaks to me everyday even though I could realistically live for years. I have a great deal of fear, mostly at the thought of not being here for my granddaughter that I care for. I wish you peace.
- By jazzloversinc
- Posted July 2, 2009 at 11:20 am
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Thank you so much for responding...sigh..this is not good news. I'm so sorry for your situation Suzanne and I will pray for you also.
- By Marg
- Posted July 2, 2009 at 11:39 am
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Hi,
DON'T GIVE UP!
My husband has neuroendocrine Small Cell cancer. He is 18 months out from diagnosis. He has had 5 lines of chemo, 2 kinds of radiation. He is doing OK. Last night he traveled 2 hours to watch the St Louis Cardnals. Next Sunday he is traveling 3 hours to watch the Chicago Cubs. During the last school year he volunteer two mornings a week in a first grade class room. He volunteers at the local hospital 2 or 3 mornings a month at the local hospital.
Is this neuroendocrine cancer a death sentence? Yes, but then so is birth.
Marg
- By jazzloversinc
- Posted July 2, 2009 at 11:47 am
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Well..yes you are right Marge...I guess we are all headed in that direction eventually. My mom's seems to be nsclc but neuroendocrine...the doc says it's aggressive like sclc...I guess we have to wait and see..they sent the tumor off to california for more tests. It was 3 cm attached to the chest wall on the peripheral of the lung.
- By NeeNee
- Posted July 2, 2009 at 2:03 pm
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I have a large cell neuroendocrine lung cancer which falls under non-small cell. In aug. I will be a 3 year survivor. I am in stage IV because it went to my right ovary. I go to the Mayo clinic in Rochester, MN. they are a referral clinic for neuroendocrine cancers. There are few neuroendocrine cancers, which one does your mother have? The one I have is very aggressive and actually falls somewhere between non-small cell and small cell, it actually has characteristics of both.
- By jazzloversinc
- Posted July 2, 2009 at 6:43 pm
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Well..the doc said it was non small cell..and we really don't know exactly what type it is yet. He send the tumor to Los Angeles for another look..evidently he wants more information than the pathologist here gave him. Thanks Nee Nee..God bless you.
The tumor was on the peripheral of her left lung..3 cm. they did a lobectomy of her left lung..upper lobe , and had to take part of her chest wall..it was attached to the chest wall. They say she has to have chemo because the tumor broke thru the chest wall..she will have a brain mri soon to make sure it didn't go there. It was not in any lymph nodes.
- By tntx2009
- Posted September 30, 2009 at 10:23 pm
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Hello: My dad was recently diagnosed with large cell neuroendocrine carcinoma involving the left lower lobe of his lung. It is a 9cm mass & has spread to the mediastinum & lymph nodes on the opposite side - Stage IIIB. Surgery was not an option. He was started on chemo 3 wks ago -- Carboplatin & Gemzaar. He is 75 years old and other than the cancer in relatively good health. He is receiving chemo weekly, but his white blood count was too low today, so they gave him a shot -- stared with Leuk??? I've read about 2 other drugs - Neupogen & Neulasta?, but not this Leuk?? drug. Has anyone ever received something similar for boosting white blood count. At this point, they are just giving him the chemo...radiation may follow. I have read through several posts and my thoughts and prayers are with all battling this. Any words of advice would be greatly appreciated. Thank you.
- By GutsyCheryl
- Posted October 1, 2009 at 5:01 am
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Wow, good point Marg ......... never thought about it that way.
Cheryl
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