Neuroendocrine Carcinoma- Poorly Differientated

You sound like you are doing great. 

I had a a NET attached to the junction of my esophagus and stomach and one infected lymph node near my pancreas. It was scary. I received four rounds  carboplatin and etoposide  the last two with 28 days of radiation.  I was lucky to have responded very well and now am cancer free for 9 months and counting.

One thing I learned at the beginning of my journey was "the tissue is the issue". What exasberated my NET was that it was a small cell carcinoma and aggressive (not that any form of cancer is easy).  It sounds like you are in great hands.  I have heard great things about Dr. Yao.  I was treated at Memorial Sloan Kettering Cancer Center (MSKCC) here in NYC.  My oncologist is David Ilson who is a G-D to my wife and I. He was very encouraging from the get go and treats us like long time firends whenever we see him. Everyone at MSKCC is great (everyone) !  I feel blessed.

I hope you continue successfully with your recovery and you will be in my prayers.

Be well,

John 

(contact if you wnt: jhtesq@yahoo.com)

pancreas1 said:

poorly diff

I am 37 years old and also had neuroendocrine carcinoma, poorly differentiated of the pancreas with mets to omentum and multiples in liver.  I had 5 rounds of Cisplatin/Etopiside and had a "complete response to chemo".  I just had CT scan this week and its clear  again, 10 months since last chemo, 12 months since diagnosed.  Interesting to hear your dr said 3 rounds of chemo after there is no evidence of cancer. mine did not say that, but after 2 rounds I pretty much had a clear scan already.  Now he says that if I go 2 years they will consider "cured".  I am still very concerned of recurrence, from what I have read it is normal for this cancer to respond well and then it recurrs.  This is the only place i have ever found anyone with something close to what I have.  Good to hear you are responding well.

forgot to add, mine was small cell also.

katiec79 said:

poorly diff

Congrats on the clear CT! Your story gives me hope.

My doctor also said I would be considered "cured" at 2 yrs. 

They could not even count how many tumors were on my liver so that is probably the doctor wants to do the 3 extra rounds of chemo. It had spread alot. 

I worry about the high recurrance rate too. Just trying to take it all one step at a time. 

Like I said to pancreas1, I have NEVER heard a doctor say that about NET - but it gives me hope!!!!

My husband - 41 - is on his 3rd round of chemo for high grade PNET (mets to liver). He seems to be responding well - first CT Scan on May 27.

How are YOU doing? Did you have chemo? What kind? Did it work? Where else had your cancer spread? Where are you and what doc are you seeing?

Hi there,

I'm not sure if my experience relates to your kind of cancer, but just in case, I wanted you to know that treatment can be do-able.  I had radiation & chemo simultaneously from July to November, surgery, then follow-up chemo.  That was five years ago come this July.  So far, so good, no reoccurence.

I am wishing you the very best,

Hang in there!

Susan

survivingsu said:

Undifferentiated Small Cell Carcinoma Uterine Cancer

Hi there,

I'm not sure if my experience relates to your kind of cancer, but just in case, I wanted you to know that treatment can be do-able.  I had radiation & chemo simultaneously from July to November, surgery, then follow-up chemo.  That was five years ago come this July.  So far, so good, no reoccurence.

I am wishing you the very best,

Hang in there!

Susan

Thanks for the response. My husband's cancer is pancreatic neuroendocrine - high grade. They said it wasn't possible to do surgery - I'm not really sure why - because it's spread to liver? But I read about many who had it spread who were still able to be treated with surgery later. Who knows. The hope I get from you is that it's been FIVE YEARS and you've had NO recurrence. AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Mind telling me what they gave you as a prognosis? They make us feel like neuroendocrine - high grade - comes back like wild fire .... that gave us such little hope. 

Hi! I'm new to all of this and normally am a very private person - I don't even post on facebook. I joined this discussion board to learn and understand my options and future a little more. And I thank you all for posting your stories. I am still in the shocked, disbelief, and panicky state. I was diagnosed with cancer the first part of June this year after complaining to my DR. more than 2 years and having had colonoscopies and endoscopies of the stomach twice (to incldue a recent visit for each). My Dr. made a few adjustments to my thyroid meds a few times. In early April I finally told my DR that I wanted to see a specialist. I was sent to the GI tract Dr and for ultrasound. From there I was sent for a CT scan and then to a GYN DR. who sent me to another surgeon. He ordered another scan and a biopsy. The initial diagnosis after a biopsy was performed, was germ cell or scarcoma. The Path slides were sent to the Mayo clinic who further diagnosed the tumor to be neuroendocrine. I have 3 masses in the lower pelvis; the largest mass is 9.1 cm X 7.7 cm. This tumor appears to be attached to the tailbone/sacrum and  pushes against the rectum to the extent of making bowel movements very difficult. There are 2 smaller masses - 4 cm, and <2 cm. The smallest mass intersects the syatic nerve. I am finally going to have surgery - within the next 10 days. A CT scan of the pancreas did not show anything by my Dr says that he will examine the pancreas with a scope. I guess after the tumnors have been removed, they will be able to verify - 100% - what kind they  are, etc. Any suggestions on what to ask next or what to do, please post them. Thank you and happy 4th!