Today is Rare Disease Day. Who here has a rare cancer?

GregP_WN

Please post what type of diagnosis you have and when you were diagnosed. We hope all of you are doing well today on this rare day.

meyati

I had a rare one that is an oddball cousin to Gorlin's Syndrome. I'm cancer free.

po18guy

1. An unknown sub-type of Peripheral T-Cell non-Hodgkin's Lymphoma, Stage IV, now NED.
2. Angioimmunoblastic T-Cell Lymphoma, Stage IV, now NED
3. 20q deletion Myelodysplastic Syndrome @ 26% of marrow, now NED.
4. Currently, I'm on a break from this cancer stuff. ;-)

kathybee

https://breast-cancer.ca/pleo-mor-arcin/?fbclid=IwAR2rVA6JgEfhHBLP2NjlxOip-iGgY4UumARIc--WQFQHuJVRnVXHOQSSMmo

I have Pleomorphic Invasive Lobular Carcinoma which accounts for .6% of all breast cancers.

beachbum5817

@kathybee, thank you for posting the article. I had never heard of your type of cancer With how hard it is to diagnose, you must have very good doctors. I hope your treatments are going well. Take care.

kathybee

Actually I have Kaiser - not so great. It took them 8.5 years to find the cancer and at that point it was a 7INCH tumor.

beachbum5817

@kathybee, that is crazy. I hope you are doing well now. Thanks for your response.

Molly72

I had Angiosarcoma which is a very rare cancer of the lining of a blood vessel.
Had it about 7 years or so ago, and had it removed by surgery. A rare cancer that usually is found in men who have worked in a particular type of plastic industry.

meyati

I had mine on my face and it came up in the late 1980s. I went to the Air Force, the NM state health hospital and doctors, Lovelace, St. Joseph and the university student health center, to try to get it off. These include Flight Surgeons, plastic surgeons, general surgeons, and primary care doctors. I sat naked-bare *ss naked several times a year for dermatology medical students. The health center is the one that set me up with the medical student exams, in the hope the cancer would be removed.

It was removed for biopsy in September 2012. I got my diagnosis Nov. 16, 2012 -it was my son's birthday. 3 years after the initial biopsy and surgery, the scientists finally identified what class the cancer was in--Gorlin's Syndrome.

I had only 2 doctors that were concerned about "IT". A Flight Surgeon that was prohibited from removing it, and Dr. Peggy Spencer at the UNM student health center-both kept referring me, but it didn't do any good.

I do not understand how anybody gets diagnosed for cancer, since they can see a cancer, and do nothing.

So, I think that it qualifies as a rare cancer-when it takes decades to get it off.

Paperpusher

Hubby was diagnosed with High Grade Neuroendocrine Carcinoma in his right lung. HIs Ki 67 was at 85%. If his scan is clear this month, he will be declared in remission.