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Rare and Other Cancers

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I just diagnosed with rare cancer Gastrinoma  Multiple Endocrine Neoplasia 1 (MEN-1) and would like to meet someone with same. I am so scared and I misdiagnosed for 4 years by a few doctors for simple fasting Gastrin blood test.

Posts: 1
Joined: Jan 2016

pheochromocytoma and adrenal cancer

hi everyone

my question is about inherited risk,my mother had this in 2000 she passed away very young at 44,.i am 35 now.

also is adrenal cancer anything to do with thyroid conditons?

she had congential hypothyroidism,i was diagnosed 2 years ago with it.

i am complicated in all his by being adopoted and having no rights to her medical information,.i only know this as i met her shortly before she passed and her nurse gave me the name of her illness and i ordered her death cert.I am in ireland much less access to preventative care medicine.

Posts: 4
Joined: Jan 2016

Immune System Isulins

In 2015 I went through chemo treatment but had to temporary stop my treatment due to my immune system becoming very low at would place me in a life threaten status if I had continue with my chemo. 

Kings Cross
Posts: 3
Joined: Jan 2016

Gallbladder Cancer - Inoperable Due to Blood Vessel Involvement

Happy New Year from England!

My wife (45) has recently been diagnosed with GBC, after going jaundiced. The U.K. Approach to treatment, is to attempt surgery, before employing chemotherapy. This seems to contradict American practice?

Her Attempted liver resection could not be carried out, as it was found that the cancer had spread to become "involved" with the portal vein and arteries near the bile duct. In the judgement of the surgeons, this made it too risky to attempt to remove it. Has anyone come across surgery in America that can tackle such situations please?

Posts: 1
Joined: Oct 2015

Gallbladder cancer stage IV with liver metastasis

My mom, who is 66, was diagnosed with stage IV GBC. Two oncologists stated that an operation is not feasible at this time. She is on Gemzar and Cisplatin (2 weeks on and 1 week off). A few questions for the board... At what point during treatment was a follow up CT scan done? How long did treatment last? Was surgery ever an option post treatment? What experience have you had with facilities in the NY tri-state area? Thank you.

Krystle's picture
Posts: 1
Joined: Nov 2015

Does Alternative Medicine help treat Cancer?

Hello everyone,

My mom is at her end of life stage with pancreatic cancer, she's 62 years old and was diagnosted May 2012. It's a rough time for everyone and she's at a point where she is ready to let go. Through her ordeal I found it touching how much a positive mindset helped her prolong not only her life, but its quality. My question to everyone is: how has alternative medicine helped you or the ones you love as cancer treatment?  

Here's the background to her cancer treatment:

CSN_Rowan's picture
Posts: 88
Joined: Nov 2013

Planned Outage on 10/9

There will be a planned CSN outage on 10/9/15 from 5am-8am EST while the site undergoes some maintenance. We apologize for the inconvenience.


CSN Support Team

Posts: 2
Joined: Sep 2015

Any Adrenal Cortical Carcinoma Survivors, please share your story!

My husband (32 years old) was diagnosed in July with Stage 3 Adrenal Cortical Carcinoma after having surgery to remove a 14 cm mass.  The surgery was performed by a well-renowed local endocrine surgeon, but after finding out that it was indeed cancerous, we made the decision to seek medical help at MD Anderson in Houston.  A CT scan 4 weeks post-operatively showed a 2 cm mass near the surgical area that is most likely residual cancer, but no signs of metastasis.

Posts: 8
Joined: Sep 2015

mmmt of ovary stage 3c any survivors ?

My mother 51 years of age diagnosed with mmmt of ovary stage 3c very rare cancer. Got optimally debulked 3 weeks back. We will b meeting an oncologist tomorrow and we are hell scared any survivors? Please help we are looking for hope

Posts: 16
Joined: Dec 2014

Surgical Recommendations for Advanced Gallbladder (GBC) Stage IV

Hi, everyone.  I am helping to find a surgeon for a dear friend diagnosed with Stage IV GBC (Gallbladder cancer) in November, 2014. She did well on Gemzar/Cisplatin but when it quit working, opted for genetic testing through Perthera (using Caris and FoundationOne labs) to see if she had HER2 expression, which has recently been found in GBC. She did have 30% expression and, so, was put on Herceptin along with some other chemos. She has also had radioembolization of the liver tumors.


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