Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Rare and Other Cancers

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.
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…
Rectal cancer with Mets to cervix, liver, lungs
Anyone females in here have rectal or colon cancer that has metastasized to cervix? I was told it was rare.
CA-19-9 readings
Hi all, hope you're all doing well and in good health. My Mum was diognised with galbladder Cancer and had surgery to remove the galbladder and part of the liver. As a part of the treatment, the oncolohist prescribed both chemotheraphy and radiotheraphy. We later on sought advice from a friend (cancer survivor) who advised…
Ct scan and pancreatic cancer
Hi Im 47 and from the UK. Im not sure if i should post this as i havent yet been diagnosed with pancreatic cancer. Around a year ago i started getting mid back pains on and off. Then i noticed 6 months ago i also had back pain inbetween my shoulder blades continuously. Around 4 months ago i started getting a pain just…
MDS - Myelodysplastic syndrome
Looking for other caregivers for support and or advise. My husband has MDS and is scheduled for a stem cell transplant in February.
Malignant Acrospiroma (sweat gland cancer)
My husband has very recently been diagnosed with Malignant Acrospiroma, which is a very rare type of sweat gland cancer. We are told this cancer is very aggressive, and so rare that there wasn’t that much information about it. Well, that’s true. And we need help. We need to get him to the treatment center/care group that’s…
Metastatic Sarcomatoid Carcinoma
Last October, my 24 year old son-in-law was having a tooth issue that wasn’t getting better after several trips to the dentist. After pulling the tooth and a biopsy of the area, it was confirmed cancer. Fast forward 3 weeks to having emergency surgery to remove a softball size tumor that basically exploded from the area…
Metastatic Squamous Cell Carcinoma of Unknown Primary
In November of 2021, I had a biopsy of a swollen lymphnode in my Left Supraclavicular ordered by Ear/Nose/Throat Doctor at UF Shands FL . This is basically where your neck & collarbone meet. 3 samples confirmed that it was cancer. Next was a CT Scan & PET Scan. The PET scan indicated not only evidence of fast growing cells…
Adrenal Nodule after right colectomy for LAMN
A year ago, I thought I had a kidney stone. In the ER I had a CT scan which diagnosed me with a very large tumor in my appendix that appeared malignant. To avoid rupture, they performed emergency surgery and removed my appendix as well as 12 inches of my colon. Fortunately the tumor didn’t rupture and all surrounding lymph…
Early diagnosis of Peritoneal mesothelioma
I have a dear friend (66 year old female) recently diagnosed with Peritoneal mesothelioma. It was discovered incidentally when a urologist was preparing to remove a kidney due to a mass (not biopsied) found on a CT scan. When the camera was inserted into the abdominal cavity numerous flat, white leions were found on her…
pancreatic cancer treatment
Has anyone had the experience of living alone while undergoing chemo?
Has anyone had care at Cancer Treatment Centers of America?
Has anyone had anything to do with these Centers? and if so I would like to know if they really are all they are cracked up to be on the commercials that you see on TV. I had a discussion on the internet with a "Patient Advocate" and saved that conversation so if anyone is interested I will send it to you. I just wonder if…
myxopapillary ependymoma treatment options
Dear All, My 50 year old younger sister lives in a rural michigan township and is the sole caregiver for my elderly parents. Recently she was diagnosed with this rare tumor - she had been having pain, numbness and tingling from lower back all the way down to her ankle for the past month. I live in los angeles and was…
Blog
As I mentioned last time, we were anxiously waiting for the day of the colonoscopy to make sure nothing was wrong. We were not prepared for anything too out of the ordinary and we assumed it might be a bad reaction to some food or some sort of internal cut that could easily be fixed. I was at school when the colonoscopy…
NeuroEndocrine Tumor Syndrome (Nets) of the lungs
Wanted to give a shout out to my NETS people. I was diagnosed with NETS a few weeks ago. I had been coughing up blood for a few months and before getting sick I was an aspiring marathon runner. Now I am plagued with constant chest pain and a death cough. Will I ever run that marathon?
Mesentery tumor
Anyone have this?
HIgh Chromogranin A of 5727 ng/ml!
Has anyone heard of such a high CGA? I am being worked up for a carcinoid or NET. I take PPI's and hav chronic renal insufficiency which I read will make the test higher...but could it make it 5600 higher? Normal for this lab is <130. Hope someone else has had this level and has some info to share. Thank you
Clear Cell Chondrosarcoma Bone Cancer
My daughter was diagnosed with this cancer in Dec 2020 at the age of 23. It was a few days before Christmas when we got the confirmation of this cancer which was found in her cervical spine (C2-C4). It was devastating on the whole family. In February of ‘21 she had her first surgery to remove the tumor which almost encased…
Immature teratoma in throat
Hey there. I was diagnosed with a very rare cancer in Feb 2019. It is called an immature teratoma in my throat. Has anybody ever had to deal with this? My doctors never dealt with it before. They tried chemo but my body couldn't handle it. Thoughts would be appreciated.
Adenocarcinoma of the appendix
I am a 58 year-old male diagnosed with adenocarcinoma of the appendix. The doctors have removed a large portion of the colon, the entire appendix, and part of my bladder as well as multiple lymph nodes. The tumor has metastasized both to the lymph nodes and to the right pelvic sidewall, and is considered to be inoperable.…
Chemo and then keytruda
I have Endometrial adenocarcinoma-stage 4 and am on keytruda for life. Other Then usual side effects, I am noticing gaps in thinking. I jump topics, get dates wrong, and my sequencing skills are in disarray. Anyone else have this? I hate making a commitment since my timing is off!!
Not sure of what type of cancer I have
Hi All, I had a fast growing lesion on my left upper arm that I discovered at the end of September 2021. By Mid November what had been a flat, small, slightly raised area slightly larger than a pencil eraser in diameter was a 5 x 4 cm 2 cm high lesion with a baseball sized area under the skin. The initial punch biopsy came…

Rare and Other Cancers

Discussion List

Discussion Boards