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Rare and Other Cancers

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New Pancreatic Cancer Discussion Board
We have created a new Pancreatic Cancer discussion board. We've moved over two discussions to help launch the new board, but due to the quantity, we will keep the remaining discussions on the Rare and Other Cancers board. Thank you! Your CSN Support Team
Leiomyosarcoma chat
I am searching for survivors of leiomyosarcoma and would like to chat about treatments. Sandra from Alaska
Gallbladder Cancer 2023 (All Stages)
(I've started this topic because the most recent annual forum I could find was for 2018.) I have gallbladder cancer, discovered during what was anticipated to be a routine laparoscopic removal of my gallbladder, based on the presence of gallstones. As is the case in "Western" countries, gallbladder cancer is most…
Spindle Cell Carcinoma
My mother in law was diagnosed with stage four spindle cell carcinoma (originating in the gall bladder) after having her gall bladder removed. She has tumors all through her abdomen. Some of them are even visible on the outside. My husband says that one looks like a half fist sticking out. She has been in an intense amount…
Thymoma Survivors/Caregivers?
My fiance was diagnosed with a thymoma 11/21 and has undergon 4 chemo cycles (PAC Regimen), the tumor shrank drastically and he will now be able to have surgery on 4/11. Is there anybody who is has been through or is going through the same journey? Just looking for support and information...Thank you!
ampullary cancer
I was diagnosed with Ampullary cancer in Jun 2009. Was suppose to have the whipple procedure but was unable to complete the surgery due to the fact that the cancer had spread into the lymph nodes. I have been on chemo treatment since Aug 2009 it is called the GTX protocol and I have been doing very well. Has anyone else…
Angiosarcoma
38yrs old diagnosed with Angiosarcoma in my breast , NEVER had any cancer, radiation exposure before , (which In Most cases is the cause) . I had a full mastectomy then week later had a re excision in chest wall … with this cancer being so rare and aggressive and doctors not having enough knowledge with treatments and all…
Sacral tumor and Neuro/onco specialist near Chicago
Hello , I have just discovered that I have destructive sacral tumor pressing on L5 nerve and caused cortical breakthrough . I am going in for PET scan and biopsy in the next week. I am trying to find specialist near Chicago west suburban. Anyone that could provide some informations to help me going through this journey…
Large Cell Neuroendocrine Carcinoma - Seeking Advice
Hi everyone, My dad was just diagnosed with large cell neuroendocrine carcinoma (2-3 inch tumor outside of his esophagus and widespread liver metastases) He just finished his first round of chemotherapy at our hospital in South Carolina, but we are trying to get him in to MD Anderson, as it seems like this is the best…
SquamousCell Carcinoma-preliminary diagnosis
Hello there new here. So my husband Larry had a lump inside his throat between his right lymph node and saliva gland. They did a biopsy last week, and a couple days ago we were told he definitely has cancer. They believe it is squamous cell carcinoma of the throat, but that's only preliminary. He is going to get a PETSCAN…
Surviving Duodenal Cancer
Hi. I'm a 54 yr old woman who was diagnosed with Stage IV (spread to liver and lungs) Duodenal Adenocarcinoma 1 year ago. I had a "partial" whipple in June 2009 and have been in chemotherapy since last July. My first six weeks of chemo were "alternative" treatments in a holistic hospital (I was too ill to have traditional…
Duodenal Cancer, reoccurrence after 1 year
I was diagnosed with Duodenal cancer, stage 3, Feb, 2011 and had Whipple surgery March, 2011. Tumor was very aggressive and doubled in size in 1 month. Extreme tiredness preceded the diagnosis but no other symptoms. They looked for the source and found blood loss and after many tests found the cancer. One year later, I'm…
Duodenal Cancer 2022
Dear all, I know this is a super rare cancer but i'm eager to know for anyone's recent experience in dealing with Duodenal Cancer after Whipple Surgery. My dad, 73 was diagnosed of Stage 3 Duodenal Cancer in May 2021. He completed Whipple and 12 rounds of FOLFOX chemo, CA 19.9 recently marks at 27, and with recurrence this…
Duodenal adenocarcinoma
My dad, age 83, was just diagnosed with duodenal adenocarcinoma in the top section. He is not a candidate for whipple or for chemo, only palliative radiation. The adenocarcinoma is bleeding, now controlled, but has not spread beyond the duodenum. They have said 6 month survival, but it is moderately diffused and they said…
Prostate to Plasmacytoma
I was diagnosed with prostate cancer in 2009 - 48 treatments of radiation and in 2016 I was diagnosed with a plasmacytoma in my C6 - 21 treatments of radiation and I really didn't have any symptoms or pain until I started moving around in my small crawl space installing cameras. I believe if I had not done this I would not…
Acinic Cell Carcinoma of the Parotid Gland
I would like to talk with anyone else that has been diagnosed with this type of cancer. My results were stage 2.. please read my story to find out more about me and my diagnosis.
Stage IV Anorectal Mucosal Melanoma
When I was 36 years old I ignored what I thought was a hemorrhoid for about six months until a lump grew in my groin, which finally got me into the doctor to get everything checked out. Little did I know that begin a journey where I would face one of the most extremely aggressive cancers, one very few doctors even know…
NET in 2nd section of the duodenum
Hello all! I'm new here! I had a NET removed from my duodenum on the 12th, they said that they got it all. Which I thought was awesome!! Until I did a little research on my own... They want me to come back in 6 months for an EGD, but they don't seem concerned about sending me to an oncologist to make sure that there aren't…
appendix cancer
being treated with folfox for cancer o the appendix...anyone know anything...
Dual primaries within 5 months
Diag with breast invasive duct carcinoma in June and uterine cancer Nov 16 th treatment and staging for the later not known as it is very recent. If anyone has experienced this I’d be interested in hearing about your approach with two oncologists treatment and the process. I’m still pretty gobsmacked about this. If you…
PTEN Mutation/Facing Second Cancer Diagnosis in 2 years/Rectal Cancer
I have been 1 year in remission from breast cancer and now likely have rectal cancer post colonoscopy screening. My path results come back this week. I found out I have a mutation of the PTEN gene which can make you more susceptible to getting a variety of cancers. Any tips on handling a second cancer diagnosis so quickly…
Ureter Partial Blockage Issue can’t be identified by CT scan
Hello Everyone, There is a partiaL obstruction of the right ureter at the pelvic inlet which could be due to a noncalcified stone or nonvisualized ureteral mass or stricture. CT scan is not able to identify. Im trying not to be overly concerned, but I’ve had a loss of appetite, some pain, blood in urine, fatigue and red…
Ampullary Cancer - there is hope!
For those who are new to Ampullary cancer - a few factoids I found. I've been told it's not genetic. It's simply very rare - a few thousand people per year in the US are diagnosed with it - and there's no known contributing or causal factor(s). The treatment protocols are limited - Whipple surgery or some are trying…
Extraskeletal myxoid chondrosarcoma
Hello, My girlfriend is processing the news about being diagnosed with Extraskeletal myxoid chondrosarcoma in her ankle. Any advice or experiences with this rare cancer would be greatly appreciated.
Adrenal Cortical Carcinoma
My wife was diagnosed on Jan. 16th with an adrenal cortical carcinoma (only 30 - 50 cases per year nationwide). The only treatment is mitotane. This cancer doesn't respond to chemo. I've found survivors who used an alternative treatment protocol and I have put her on the same program. She is recovering nicely and we are…
ACC , Adrenal Cortical Carcinoma
Anyone else recently been diagnosed/treated? I live near Seattle and seem to have great doctors at SCCA who "have a plan". I had surgery then stereotactic radiation and now getting insurance approval for mitotane with hydrocortisone. Sounds like it is usual treatment. This is tier 5 drug so UHC only covers 75% . My cost…
ACC Treatment Options
I'm so grateful to have found this site. This month marks the three-year anniversary since I had radical surgery to remove a rather large adrenocortical carcinoma tumor. I was told by two doctors, one of which is at a cancer center, that there would be no follow-up treatment to kill any hidden cancer cells because ACC…
Virtual Support Group for Mediastinal Surgeries
I am having trouble finding a support group, so I thought to start this topic. Many cancers might involve mediastinal surgery, so I thought to keep the topic open to more folks but specific to how we are recovering from this type of surgery regardless of the type of cancer. Zoom meeting every week?
Mediastinal NSGCT -Embryonal Carcinoma + Yolk Sac Tumor
Hi, Earlier this year, my younger brother who is 26 years old had a large mass in his anterior mediastinum. There was a lot of problems initially to d diagnose the type of cancer he had because his biopsy samples resulted in inconclusive results twice. After a month, the mass had grown in size (it was measured to be…
Merkel Cell Carcinoma
The VA found a mass in my right axilla, it was removed and the diagnosos was Merkel Cell Carcenoma in my lymph nodes. This is caused by a skin cancer that spreads like wild fire if not caught in time. This is a rare cancer and not on the VA list for agent orange. If anyone out ther has had this we need to get together and…
Anal Cancer
I have looked through the site and found there isn't a specific site for anal cancer. I can see that it is somewhat in the Colorectal cancer category. There is a misconception that anal and rectal are the same type of cancer, which they aren't. The treatment is different as well as a few other things. So I thought I'd…

Rare and Other Cancers

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