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Rare and Other Cancers

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…
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…
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. I knew that I would have to complete my chemo treatment at some point so now that 2016 has arrived, the cancer remains but has…
Appendix cancer/ovarian cancer?
I was diagnosed with appendix cancer in June 2011. Had surgery only. The thought was that it was caught early and hadn't spread. Been getting tumor markers and CT scans every 6 months. Last one was early Feb. 2012 - everything clear. I'm 52, had been having regular periods until the surgery in June when they all stopped…
mediastinal Germ Cell Tumors
hi everyone..i'm a ewbee here and also a cancer survivor of 20 some years.. now our oldest son has mediastinal Germ Cell Tumors, a rare version of cancer and he has it in the chest cavity as well as in his lymph glands..he is in a cancer treatment centre ..he had devoloped some fluid around his heart .they think that it(…
Uterine Papillary Serous Carcinoma (UPSC): anyone else out there???
I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer,…
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…
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…
Gallbladder cancer - can anyone offer any support
Hi, our world has been torn apart and I was wondering if anyone out there could offer any wise words or positivity to my family. My amazing mum (who has just turned 63) was told on Thursday that the gallbladder which was recently removed two weeks ago during a routine open surgery is T2 NX adenocarcinoma of the neck of the…
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. Rowan CSN Support Team
Ampullary Cancer
I was diagnosed with Ampullary Cancer, stage 111, T4T1M0 in March of 2010 at the age of 45. Whipple procedure was performed and went beautifully. 5 1/2 weeks later, I began Chemo. My chemo meds were Oxiliplatin and Xeloda. They have proven to be very effective. I've reached the 5 year milestone and continue to do well. I…
pancreatic cancer is there anyone
my wife was diagnosed last may shes going to university of mich clinical trial of gemzar with wee one inhibitor on monday following mon. the same then off a week said stage 2b localized inoperatable in head of pancreaous hasn't spread, the problem is its wrapped around two major arteries they hope the chemo plus next week…
cancer blood count
my brother in law has beek feeling sick and his doctor tested him for alot of different things and they said they found cancer cells in his blood at first the count was 15 percent and then 25 and now 40 they did every scan and test on him to find out where they cancer was but they cant find anything. is there a type of…
Just a celebration of life
Today marks 7 years since my Whipple surgery for stage 3 pancreatic cancer! I posted this not to brag, but, to let folks know there is always a chance to beat the odds and to never just give up! Wishing everyone a BLESSED DAY!
Metastatic Adenocarcinoma of the Jejunum (Small Intestine)
Finding some stories on these discussion boards that are very encouraging especially since this cancer is rare but have yet to find a match to someone else going through this same cancer. My 58 yr old husband was just diagnosed stage 4 Small Intestine Cancer of the Jejunum at the end of January. There are small metastases…
Urethral Cancer
Hi Everyone, Has anybody else ever had urethral cancer? I had been going to my doctor for about two years complaining of blood in my urine and pain. He said it was my prostate and treated it as such. The symptoms got worse and after many months of medications he sent me to a urologist. The urologist was not happy when he…
solid mass in my gluteus maximus
I am 34 years old, and hospital just accidentaly found a mass in my gluteus maximus. I am sooo scared, and I hear this is very rare... Anyone else hear of this?
Uterine Carcino Sarcoma
Hi All, About 2 months ago, I began to get stabbing pains when "evacuating". I found myself bracing every time I had to go. My husband could hear me trying to breath through it. In the beginning, it would happen every now and then. It was exactly the type of pain I had endured when I had endometriosis. That took 3…
Any survivors of Cholangiocarcinoma?
My uncle was diagnosed with Cholangiocarcinoma, and has been cured, but experiences pain constantly. He is very despondent, and beleieves he has only 4 years left to live. He desires to talk to anybody that has had Cholangiocarcinoma; just to see what to expect. If you have survived Cholangiocarcinoma, please email me at:…
Angiosarcoma
Hello Everyone. My Name is Paul and I am trying to get some info for my Dad. He was diagnosed last month with angiosarcoma. He has a mass removed from his nose and forhead and they have found spots on his lungs during a PET scan they then did a lung biopsy and determined it is cancer but they are unsure what type. Our…
Lymphomatoid Granulomatosis
Hi, I am asking for anyone who has a loved one with Lymphomatoid Granulomatosis of the Central Nervous System (my sister has it from the brain and the spinal cord.) My sister is British living in Australia with her young family and is 39 years old. She has in the last 12 weeks been diagnosed with the condition and is…
Pancreatic Cancer - a life changing event
hi all; First of all, pardon my humor, it is my defense mechanism. I have to laugh and I try to find the humor in everything, including this....situation. Now on with it........ I am on an adventure. I was diagnosed at the end of July 2014 with Stage 4 Pancreatic cancer. Needless to say I was not expecting this. I even…
lg. cell, Sm. cell gastrointestinal nueroendocrine carcinoma
My questions is, I have been in remission for 13 months today from gallbladder cancer and large cell and small cell gastrointestinal nueoendocrine carcinoma! I went to my family doctor yesterday and found out I have a UTI. The doctor told me there was bilirubin found in my urine. The doctor I seen said she did not know if…
Retroperitoneal Squamous cell carcinoma of undetermined origin
My 45yo wife was recently diagnosed with the above described cancer. Surgery was performed last week and the retroperitoneal mass as well as all retroperitoneal lymph nodes were removed. All showed SCC. My wife had a hysterectomy 20 years earlier. There are no signs of cancer in her colonoscopy, or gynocological exam. We…
squamous cell carcinoma of the kidney
My family member has recently been diagnosed with squamous cell carcinoma of the kidney. His kidney was removed after a long standing history of kidney stones, and since, a large tumor grew in its place and has also been removed. He will be receiving chemotherapy. Does anyone know any other option for treatment ?
Inravascular B Cell Lymphoma
My mom was very recently diagnosed with Intravascular B Cell Lymphoma. She has started her Chemo treatment with R-CHOP. She has responed well to the first round. Does anyone know much about this rare type of Lymphoma?
Primary Central Nervous System Lymphoma
My son is 10 years old and he has Primary CNS Lymphoma he was diagnosed in April of 2010. I would love to talk to anyone who's child has the same type. There is very little info availible on children that were in perfect health prior to getting sick. He has finished his protocal and we are getting ready to do our second…
Mucoepidermal Cancer of the Salivary gland
Not sure which board to post this on so I'm trying a couple. My mother was diagnosed with low grade stage 2 mucoepidermal cancer of her left salivary gland about 1 1/2 years ago. She underwent surgery and radiation therapy. She was just diagnosed with the same type of cancer on the same side but it is just behind her last…
Inflammaroty Myofibroblastic Tumor (super rare lung cancer)
Hi All. Im new on this site, and im a 19 year old survuivor of just over a year! (yay!!) I was diagnosed with a rare form of lung cancer. It is called an Inflammatory Myofibroblastic Tumor. I was diagnosed February of 2014, and as of then, I was only the 25th resported case in the entire world. Crazy right? It was such a…
Extrapulmonary small cell carcinoma localized in lymph nodes
Hi, I'm new here and hope to find friends and opportunities for mutual support. I'm a youthful 60 and intend to outlive my mom, who made it to a youthful 98! I was diagnosed in Sept. 2014 with Extrapulmonary small cell carcinoma localized in my left axillary (armpit) lymph nodes. The only study I could find…

Rare and Other Cancers

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