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

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…
vulvar cancer/melanoma
I am a 49 yr olf mother of 4 grown chilldren and 24 grandkids, I am not ready to die!! Aprox 7-8 years ago I had a small 1mm bump on my vulva, went to the doctor to be told it was a clogged pore (no biggy)so they removed it with something that reminded me of a apple correr, boy that hurt! The doctor wasnt empressed with my…
Mantle Cell Lymphoma
Hi everybody, In 2008 I was diagnosed with NHL and did the chemo treatment, I relapsed shortly after chemo treatment. More test was done and I was diagnosed with stage IV Mantle Cell Lymphoma. March of 2009 I got intense chemo followed by a allogeneic stem cell transplant. March of 2010 my big test (CT Scan and Bone…
PLEASE READ & HELP US!! malignant Eccrine Porocarcinoma (tumor form)
On June 21st 2013,My 31 year old husband was recently diagnosed with a very rare, most aggressive form of cancer..Malignant Eccrine Porocarcinoma. Apparently it started in his sweat glands. There have been less than 300 cases ever reported in the world and unfortunately they don't know a lot about it. He went from having 1…
Is it possible to have weight loss as the only symptom of cancer, or the only symptom of advanced ca
Other than weight loss, there aren't any observable symptoms. This person has an appetite and good amount of energy. Capable of doing daily chores and walking through large grocery super centers.
hidradenocarcinoma (cancer of underarm sweat gland)
i am looking for any information or anyone that has this rare cancer or anyone that has first hand knowledge of it. i have found it almost impossible to obtain information and i have information on my treatment which may be helpful.
Appendix
post whipple stabbing feeling????
Has anyone had any attacks post whipple?? It feels like a stabbing in the upper abdomen with pain shooting around the bra line in the back and loss of voice like iv had the wind noked out of me. It lasts 5-15 min. and then in very soar for about 1-2 days. Initially after the attack i have to take 2 oxycodone to relieve the…
What to do when you are underinsured
My wife was diagnosed with Adenoid Cystic Carcinoma. Its rare and about 2000 people in the US get a year. She went in for having trouble walking(balance) and back pain. Its Cancer of the Salavary glands However it was not in her salivary glands it moved to her spine near her trachea. They had to do a 6 hour spinal fusion…
Alternative treatment and cholangiocarcinoma is working
Hi All, My wife was diagnosed with cholangiocarcinoma, bile duct cancer, last fall. She was operated on but the cancer was non-resectable. The doctors and oncologists I spoke to were giving poor prognoses about her chances. The oncologists and other info I was able to find basically said that chemo and radiation wouldn't…
Olfactory neuroblastoma at age 29
Hi all, I just got diagnosed with olfactory neuroblastoma yesterday after a call from my doctor. I had visited an ENT for a sinusitis check last week and he told me he found some growth and did a biospy and ordered a CT scan. He got the biopsy radiology results today and called me to inform of the diagnosis. He has…
Leiomyosarcoma 2021
All the LMS threads are kind of old, so I thought we could start a new one and see how everyone is doing and what you are doing. I was diagnosed with LMS in July 2018 in my left kidney which was the size of a football. Surgerically removed the kidney but the disease had started to spread and margins were positive. So I did…
Duodenal cancer
Hi! Anyone out there with doudenal cancer? My husband was diagnosed with duodenal cancer (adenocarcinoma) in august 2018. When he was diagnosed he was already a stage IIIV, and the cancer had spread to his liver and skeleton. He recived chemo therapy, but had no effect of oxaliplatine. Last year he ha 8 rounds of FLIRI…
gall bladder cancer
My siser, who is 44 years old, was diagnosed in November, 2001, with gall bladder cancer. They were doing surgery to remove her gall bladder due to a lot of trouble she was having. When they went in they found the cancer. They removed her gall bladder and a portion of her liver. At this point the cancer is limited to a…
Ampullary Cancer
I had ampullary cancer and had whipple surgery. 22 lymph nodes were removed and tested. All were clear of cancer. Oncologist is recommending chemotherapy to prevent recurrenace of cancer. I'm 72, healthy and very active. I'm reluctant to have the chemotherapy. Does anyone have similar experience, decision, comments?
Looking For Gallbladder Cancer Survivors
I was diagnosed with gallbladder cancer 2 1/2 years ago. I had my gallbladder removed, 3 sections of the liver and 16 adjacent lymph nodes. I had chemo and radiation although the surgeon and the surgeon who provided the second opinion said I didn't need chemo and radiation. Although gallbladder cancer is rare, I am sure…
Appendix Cancer, PMP
I had PMP, Psuedomyxoma Peritonei, in 2007 and was treated at MD Andersen Cancer Center. What a fantastic place! I'm grateful for my recovery and there is a lot to know about cancer and PMP. If anyone wants to talk about it or needs resources for appendix cancer, let me know.
chromogranin A test
Hi, I am glad to find this site, very helpful. I am currently being worked up for pheo/carcinoid/neuroendocrine... Have classic symptoms. My chromogranin A came back elevated from Quest diagnostic: Chromogranin A SERUM 26.0 (H) ng/mL 1.9-15.0 (normal range per lab) What does this mean, does not seem very high, are there…
Duodenal cancer: recovery from whipples
Hi, My husband was diagnosed 10 wks ago with duodenal cancer which had spread to panceas. He had a whipples. He came out of the op ok but in recovery started to bleed they took him into surgery again. They couldnt stop the bleed & cam every close to lossing him. He had a third surgery the next day they stopped the bleed.…
neuroendocrine/carcinoid
Hello, I recently was diganosed with a carcinoid tumor in my face. It went from my lung to my faced. The area where I live is totally incompetent they played with my life since Feb this year. Then I went to FoxChase Ctr in Phila they did the same thing. I just found this site and I'm tryhing to find out where I can find a…
Blood Cancer - Polycthemia Vera
Hello, I'm a 51 y/o female just diagnosed with polycthemia vera. Was told by the doctor this is most commonly found in 60+ y/o men. But doing research I found out ANYONE can develop this. Does anyone else have this rare blood cancer who can tell me how they manage & live with this rare cancer? Any information provided…
Malignant Glomus Tumors
Is there anyone who knows about this rare tumor interested in exchanging information?
Sweat gland cancer?
I have been diagnosed with low grade malignant acrospiroma, a rare tumor of the sweat gland. It started out as a bump under the surface of the skin on my right middle finger, and the docs thought it was a cyst. After having it removed, it was sent off to three different pathologists nationwide to get a diagnosis. One said…
GIST IN VIET NAM VETERANS
My husband is a Vietnam veteran. He was diagnosed with GIST (gastrointestinal stromal tumor)in August 2009, had surgery on September 11, 2009. Surgeon removed thirty percent of his stomach and fifteen percent of his liver. He was put on a drug called GLEEVEC. Five and a half months later, and this GIST has returned. One…
Mediastinal seminoma
Hello, I’m a primary mediastinal seminoma patient aged 32. I didn’t have biopsy before treatment and surgery was taken as initial treatment because the tumor is small with clear border . The tumor was radical resected last month,so did thymus and surround adipose tissue .The tumor size is 4*1*3.5cm and there is no…
MPNST?
I am hoping to find anyone with Malignant Peripheral Nerve Sheath Tumor and find out about their treatment and diagnosis and any alternative diet or supplements they are using. I was born with a genetic disorder called Neurofibromatosis type 1 that sometimes turns malignant. I had 3 large tumors removed from my neck about…
Ewing sarcoma old portacath
I am having trouble geting my doctor to find my portacath. I was wonder if the reason is a dear hit me in the chest and imbeded it in my muscle. Now only a pillow is on top of the muscle. Or maybe my doctor is incompetent. Funny is if it is a medical mistake is that my blood sample will now cause strokes in ther patients…
Lacrimal System Carcinoma anyone?
Hello All, Anyone else out there with head and neck cancer involving the lacrimal area? My husband just recently had surgery to remove his entire lacrimal system (tear duct) and then had radiation treatment with chemo (cisplatain) that he completed 4 weeks ago. It's been a brutal 3 months to say the least. The side effects…
Ampullary cancer survivors?
I had a tumor of the Ampullar of Vader removed in February, 2003. The full whipple procedure was done at Memorial Sloan Kettering on February 17, 2003. Because 5 lymph nodes were involved, chemo therapy and radiation were prescribed. Two years later, I have been said to be clear of all cancer, and am now on 6 month scans.…
Thymic Cancer
My spouse has been diagnosed with Thymic Cancer -- between rounds 4 and 5 of triple chemo -- oncologist thinks next step is surgery. Anyone out there have suggestions on where to go for surgery? Also has anyone had pericardial and pleural effusions and/or hoarse voice with this Cancer? Thanks in advance!

Rare and Other Cancers

Discussion List

Discussion Boards