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Rare and Other Cancers

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…
Mesothelioma
I thought I would start a new thread for mesothelioma, since most of the posts appeared pretty old. My Dad was recently diagnosed with mesothelioma. Our extended family has quite a few cancer survivors. I can't seem to find anyone that has had mesothelioma. It is a very isolating feeling. He is going to well known hospital…
mucinosis adenocarcinoma
Want to hear of anyone diagnosed and treated with this originating from the appendeix.
Vulvar Cancer
I was first diagnosed with VINIII in Nov. 2016 and I've had surgery every year since. I'm a 73 year old widow amd first found it 6 months after my husband died. It continues to come back but my oncologist watches me closely. Only in 2019 did it come back Stage 1. That year I was there in Feb and when I had surgery in June…
Diffuse intrinsic pontine glioma
Any other adults with this type of brain cancer ?
Rare form of skin cancer inner ear
I was diagnosed and recently treated for this rare form of cancer. I had my ear drum removed and lost hearing. I have been having a lot of weird symptoms since then including extreme nausea, no appetite, weight loss, weird taste in mouth along left side of tongue. Also increased gag reflex. Was wondering if there is anyone…
Ovarian mass/appendix originated?
I am 32 years old.. always been pretty healthy.. starting in dec 2016, I began to have some right lower quadrant discomfort... but I had been having bouts of constipation/diarrhea so I didn't think much of it.. in January i started my menses and just never stopped.. I had always been consistent. 3 days done.. so I…
Looking for anyone in the 20-40 age range with metastatic cancer of unknown primary?
I am 32 with Adenocarcinoma of Unknown Primary. My first line of treatment was chemo with Carboplatin and Taxol. I had 10 rounds and the cancer was mainly stable with some spreading to the bone. Tomorrow is my 3rd round with my second line of treatment, chemo with Alimta. I am very blessed and am in good condition (well I…
squamous cell maxillary sinus cancer--anyone???
Is there anyone out there that is dealing with squamous cell maxillary sinus cancer? I have been searching this site and others trying to find someone to exchange information and/or encouragement with...to no avail. I was diagnosed in Feb or this year (2009), and in March, had surgery where about half of the roof of my…
Vaginal Cancer
I have been diagnosed with vaginal cancer which my oncologist is telling me is rare. On the 29th I am scheduled for a (hopefully) robotic surgery...I have had many surgeries and have big time problems with adhesions....so I'm hopin they won't have to open me up. They are going to do lymph node dissections. He told me I…

Rare and Other Cancers

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