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Looking for anyone with MEN2B, or just MEN
I'm 19, and have been a survivor of medullary carcinoma of the thyroid, ie thyroid cancer, for 6 years. i really want to find someone with my disorder. Are you out there? I have Multiple Endocrine Neoplasia type 2B.
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re-occurrence
My 46 yr. old son had a finger amputation due to digital pappillary adenocarcinoma 2 yrs ago. Today he showed me a nodule on his same hand as previous nodule was. Has anyone else experienced re-occurence of digital nodules? He will make appt for biopsy ASAP.
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Cancer in lungs
Well I had a needle biopsy earler this week to a lung nodule to confirm that it was MPNST sarcoma mets to my lung. My doctor told me the news Friday that it was positive for MPNST mets and that it was at stage 4. Now they want to do a biopsy to my lymp nodes in my throat because they showed hot spots in the PET scan also.…
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unknown primary, scc secondary in the axillary
Heya, finished radium 8 weeks ago after full lymph node removal from the armpit. Still no primary detected. Lymphoma is now present but the pain through my arm seems like arthritis in the bones and joints including my hand. My physio said its not pain from lymphoma and pointed me towards arthritis instead. The onset of the…
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Discussion Board and Chat Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of discussion board and chat spamming. If you…
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Does anyone suffer from severe pain years after the Whipple?
Hi, I am from Taiwan,Asia. One of my female friends has been suffering from severe abnominal pain after the Whipple. She had the surgery four years ago, and the pain continues and is worsening. She has consulted many doctors and there has been no improvement. Does anyone have the same experience? It will be highly…
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carcinoid tumour on appendix
Hi we are in complete shock my 22yr old son had appendicitis in january and surgeon removed his appendix he was called back to see surgeon and was told that they had found a carcinoid tumour on his appendix 22mm (I think)he was told that they had got it all and nothing else needed done. he was having some aches and pains…
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Galbladder Cancer - 3 year survivor
Happy Anniversary to my Mom!!! 3 years and counting!!!!! Lots of chemo - lots of breaks - lots of ups and downs - lots of tears, frustrations and difficulties. But lot of laughs, smiles and good quality "living". Sooooooo grateful for the support of this board and the people we've met along the way. Vent, rant, scream -…
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Whipple surgery, finding the best doctor
I need to find a surgeon with a lot of experience in the Whipple surgical proceedure. How does one go about finding someone who does many (e.g. 100/yr) per year? How does one get seen by them in a timely fashion? Thank you!
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Ampullary Cancer (Ampulla of Vater)
Hello everyone. My mother (56) was diagnosed with Ampullary Cancer, and she has undergone Whipple procedure (pancreatoduodenectomy) 2 months ago, and is getting ready to start with chemo and radio treatment. From the beginning, none of this made any sense: - she's non-smoker (though our father was a smoker, but they…
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angiosarcoma
My brother 27 years old has angiosarcoma. Anyone out there have experience with this cancer?
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Appendaceal Cancer
I have a very rare form of cancer of the appendix and I am looking for others who may have had it. Or others who have had a rare cancer and would like to just chat and share stories of our lives. I'm new in cancer survivorship and I'm finding it very hard. I live in Alaska and there are few supports where I live. That is…
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Adult Rhabdomyosarcoma
I have recently been diagnosed with Rhabdomyosarcoma in my sinus. I am a 29 year old, and am waiting for confirmation from the Sarcoma folks at Memorial Sloan-Kettering Cancer Center. Of course I am scared and confused, but at least early signs seem to indicate that while at stage 4, my other symptoms/location of the tumor…
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Pancreatic cancer
I am suffering from stage 4 pancreatic cancer with cancer spread to liver and intestine. Whipple surgery was ruled out. However FOLFIRINOX chemo has brought down my chemo marker down from 18000 to 140. I am felling lot better. I know survival rate is 1% in a year. However I would like to know if anybody has survived beyond…
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Poorly Differentiated Neuroendocrine cancer with Well to Moderately Differentiated Adenocarcinoma -
Hello everyone - this is my first post here. My mom has poorly differentiated (high grade) neuroendocrine cancer with (we think) a mid-ileum gastrointestinal primary and adenocarcinoma (lung; well and moderately differentiated) all with a KRAS mutation. The cancer is metastatic - currently in the lung, brain, and a some in…
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Private Message Spam
Hello everyone, Thank you to those who've alerted us to the PM spamming from earlier today. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of private message spamming. If you received a message from rita44556 prompting you for money,…
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Caricinoid Tumor
I am a 29 year old female who was diagnosed with a caricnoid tumor in my small intestine. I underwent surgery in 5/01 to remove a portion of my intestine and 9 lymph nodes. Thankfully, it had only spread to one lymph node and the margins were all clear. Because of this early detection I did not have to undergo any other…
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ocular melanoma
Almost3 years ago I was diagnosed with ocular melanoma. I was good about 2 yrs straight for going to my check ups but the last year I haven't gone and am having some simular symptoms again. Does anyone know where I can find information on statistics after being diagnosed ex. Chances of it spreading and what to look for?
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Leiomyosarcoma
I am a survivor of lieomysarcoma which is a 1 in 4 million probability. I saw a posting of someone who shares this cancer and would like to talk more. Ironically, there was another lady in my small town that is surviving this same cancer. Is this coincedence, is the diagnosis occurring more frequently, is this type of…
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Adnexal Carcinoma
My cousin was diagnosed with Adnexal Carcinoma about two or three years ago. It started with a bump on his left foot that he had for five years. It was misdiagnosed for gout. He finally could not walk on it any more and went to the e.r. where the doctor knew something was wrong. He sent off for a biopsy and that is when we…
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Spindle Cell Tumor
I had what they thought was a lipoma through exam and sonogram. After surgery they said that it was not a lipoma, but a spindle cell tumor and sent it to pathology. It was on the back of my arm, near the shoulder bend. They said pathology would be back in 48 hours, but it has been 6 days. The info on the internet is not…
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Private Message Spam
Hello everyone, Some of you know that we have had previous problems with a particularly tenacious scammer named sarah, and unfortunately she has struck again. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of private message spamming. If…
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Neuroendocrine Carcinoma- Poorly Differientated
I'm looking for anyone out there who is a survivor or also currently going through treatment. I'm 34 yrs old and was diagnosed with Neuroendocrine Carcinoma poorly differientated. It is the very aggresive kind of neuroendocrine cancer. Main tumor was found in the cecum with mets to a lymph node and liver. I am responding…
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Concerned and Searching for Answers
All, I am hoping to get help and advise. I had a full nephrectomy on December 3, I just went back to have my 6 month CT scan and was found to have several enlarged lymph nodes. I am getting very grim news and have been advised for a treatment plan, but one that does not involve removal of the enlarged lymph nodes. Anyone…
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All CSN members are invited!
It’s finally happening! We are happy to announce that as early as tonight, a new Chat application is being launched on CSN. It is NOT Java-based and it DOES support members using mobile devices. To access chat, you must be a CSN member and logged on. Once logged on, all you have to do is click chat in your left navigation…
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Malignant fibrous tumors on lung pleura
I have had 3 recurrences of malignant solitary fibrous tumors on the pleura of my lung. I am told that this is rare and that no other treatment is called for except surgery. I have Ct scans every 3-6 months to check for a recurrence. I am wanting to get in touch with anyone who may also have this condition to compare notes…
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Spam Emails
We have been made aware of another round of spam emails being sent to users. While we try to have security in place to handle such emails, we cannot always catch them all. If you have received an email asking for money, please do not respond to the email or the private email address that was given by the sender. Please…
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Dad has colon cancer
Hey everyone, i need help my dad has a rare diseSe called puertz jegher sydrone. he had surgery to take out polyps in September. While theybwere in there they found a cancerous polyp at the start of the intestine were Ur stomach and Inotes fine meet. It was stage three the do. Was 95% sure he got all of it out. They then…
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Malabsorption issues after Whipple surgery
My husband was diagnosed with pancreatic cancer in November of 2006. He underwent the Whipple surgery at the end of November. For the first two years, he had no real problems. He maintained his weight, but was diagnosed as diabetic as they had taken 2/3 of his pancreas during the surgery. At the time of surgery my husband…
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planned maintenance on CSN this morning
Planned maintenance will be done on CSN this morning between 5:00 and 8:00 Eastern Time. There may be one or more outages during this time. We apologize for the inconvenience. Greta