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Choroidal Melanoma Survivors
I was diagnosed with a large choroidal melanoma on January 23, 2009. It was discovered during an eye exam. I had visual disturbance which prompted my dr visit. It felt like something was in my line of vision but no matter how many times I wiped my eye or blinked it never moved or disappeared. I had 3 different eye drs look…
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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
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Alveolar Rhabdomyosarcoma
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know anything about undifferentiated/Endometrioid level 3C cancer?
My daughter had surgery on July 8th and they found out that her cancer is Undifferentiated/Endometrioid. Does anyone know anything about this cancer?
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leukoplakia on vocal cords
Hi there I have been diagnosed with both Leukoplaia on vocal cords which i have had 10 surgeries on vocal cords..it continues to return immediately post surgery. Secondly I have Lichen Sclersus and I am so in need of suggstions advice and support. Thank you for your time...
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More surgery for my appendix cancer...
I just spent 3 days in NYC for appointments at Memorial Sloan Kettering. The conclusion is that now is the right time for surgery; we shouldn't wait. I don’t have the detailed reports yet, although my surgeon has them. My metastatic appendix tumor has grown, but still appears to be confined in scar tissue. However, it is…
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Leiomyosarcoma
I'm one in a million. That's the incidence of my sarcoma. Needless to say, I don't have anyone to share my cancer experience. There are 650 of us in the USA this year. How to make contact? At least people in this chat know what its like to have a rare cancer! Hello!
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Mixed Maligant Mullerian Tumour
Hi, This is Fazil from india. My Mom (age 53) has tumour in uterus. 10 days before surgery done and uterus removed. after that uterus given to lab for test. test report says....that is Mixed Maligant Mullerian Tumour (carcinosarcoma) with heterologous elements (obseoid), pathalogical stage pT3a. Please explain about this.
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Olfactory Neuroblastoma
Hello, Our son has been diagnosed with an Olfactory Neuroblastoma. He's currently living in New York and plans to be treated at Mount Sinai. Anyone possibly have any information on treatment of this type of cancer at Mount Sinai? I see from other forums that UVA, Pittsburg and Johns Hopkins seem to be the 3 recommended…
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Small Bowel Cancer
I'm recovering from small bowel cancer. I have found very little information online. I'd like to hear from anyone who has or had small bowel cancer, or has links to any information. Good luck to all of you. 2ndtimer
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DFSP Dermatofibrosarcoma Protuberans
Have you been diagnosed with this rare sarcoma? I have started a Facebook page (DFSP - Dermatofibrosarcoma Protuberans) to help everyone share information. I am a new diagnosed person. The information is scarce. I am waiting to find out what are my next steps but it's been 12 weeks since my Dermatologist has known which…
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Pancreatic Cancer/Whipple procedure
My mother was diagnosed last month with pancreatic ca, and underwent the Whipple procedure to remove the tumor. All of the duodenum was removed, 2/3 of the stomach and 1/3 of the pancreas. The tumor was growing in such a way as to occlude the common bile duct causing jaundice. The tumor did not show on any CT scans, and…
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Gallbladder Cancer - 2015
Hello All, I am sorry to start this post with the sad news that my own mother has passed of this disease on January 20, 2015. What you should know is that this was a 5+ year battle and there is hope for those of you newly diagnosed. I feel like this board has become stale and it is so important to connect with others…
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Financial Assistance
My wife was diagnosed with Olfactory neuroblastoma back in March. It is located in her nasal cavity, brain, two lymph nodes in her neck, and behind her throat. She had extreme chemo treatments every 21 days with great results. They started to do the surgery but backed off after cancer cells were detected in an area thay…
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Memorial Sloan Kettering offering free genomic testing for rare cancers
From our experience (stage 4 gallbladder cancer, but it applies to others also), it is so important to ask to get your tumor tissue genomically tested as soon as possible, to see if you are a candidate for immunotherapy or targeted therapy. Please ask for them to test for immunotherapy indicators like PD-1/PD-L1 as well…
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Vaginal Cancer
Dear Sir/Madam: I have vaginal cancer for which I have had surgery and radiation treatment. Since this appears to be an unusual form of cancer, there is very little information that I can find on the internet. Oncologists and gynolcologists have not been very helpful in this regard. I am 69 years old and have gone beyond…
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Adenoid Cystic Carcinoma
Just wanted to poke my head into this forum, I participate in the head and neck forum since thats where my cancer was found. But, it is a rare cancer, so, just wanted to put a post here for anyone that may pass through looking for something on adenoid cystic. Much Love, -PC
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GIST and Gleevec
Does anyone have or had Gastrointestinal Stromal Tumors?
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Need help! Olfactory neuroblastoma
my Mom found out not to long ago that she has olfactory neuroblastoma it started by loosing her sense of smell and taste slightly, they then found pollups in her nose wich they did surgery on and got out but they also found the tumor at base of the skull. So she went in for surgery last Wednesday 6 days ago (valentines…
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Whipple procedure recovery
My Friend had the Whipple procedure several weeks ago. She has pancreatic cancer. The surgery was successful but the recovery is very difficult. Can people share their experiences with recovering from the Whipple and what helped them get through?
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Pancreatic cancer
Why isn't there a listing for pancreatic cancer? It's one of the most deadly. How do I get to those discussions? Thank you in advance
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Appendiceal Cancer
I am 51 and after going to the ER for Appendicitis I found out I had a 10cm mass on rt ovary, and shadow or lesions on my liver. I had surgery with a gyn/oncologist at Duke yesterday who quickly found out it was a mucinous appendiceal cancer that had encapsulated my ovary. They removed both ovaries, tubes and appendix…
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Biopsy of thymus
I am 56 and have an enlared thymus. My surgeon said that he wants to remove the thymus because the procedure would be the same for the biopsy meaning cutting the breast bone. Please I am so scared is there anyone out there who has had this surgery done? I have had a cat of my chest and thats how they found the enlargment.…
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HELP!!!! Thymic Carcinoma
My mother was diagnosed with Thymic Carcinoma. She has completed an aggressive chemo treatment, but the doctors said it is still inoperable because of the location. We were told the radiation treatment will be very intense, but would only add a few months of life. I would appreciate any input on different treatments and…
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Peritoneal Mesothelioma
I’ve just been diagnosed, and I know almost nothnight. Does anyone out there have the same kind of mesothelioma?
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Peritoneal Mesothelioma
I’ve just been diagnosed, and I know almost nothnight. Does anyone out there have the same kind of mesothelioma?
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re-occurring plasmacytoma in a different location
Is there anyone that has had re-occurring plasmacytoma in a different location? This is my second bout. First was in my back (2002) and now I start treatment in my hip. My doctor says it is very unique specimen to have another singular tumor in a different location. The hope is way eliminating the tumor will also eliminate…
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Alternative cancer therapy
Hello. I'm from the Netherlands and my father has been diagnosed with liver metastases from an Adenocarcinoma of Unknown Primary. Due to his condition he's unable to receive any conventional cancer therapy. The doctors think his liver is too weak to withstand chemo or radiation and the doctors say immunotherapy won't work…
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Fallopian Tube Cancer
My mom was diagnosed with this after having a radical hysterectomy to treat a stage 2 adenocarcinoma cervical cancer tumor. They discovered she also had adenocarcinoma of the left fallopian tube and precancerous cells in the right. Because it was found after the surgery and not staged properly, the drs decided to treat it…
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Appendix Cancer
Dear Friends, I have always gladly made myself available to help others with appendix cancer. However, for the next few weeks at least, I won't be answering emails and such, as I have to take care of myself. I've had a recurrence after 9 years of NED, and am headed to Sloan Kettering for more surgery in a few days. My…