The 29th is Rare Cancer Day

MerryMaid

What cancers are considered to be "rare"?

Molly72

I had something called Angiosarcoma, cancer of the lining of a blood vessel.
It presented as an ugly bright purple bruise in an area that had not been bruised.
I insisted that the area be biopsied, the doctor refused until I put up a fuss. When lab results showed cancer, she said she never heard of that type.
I had no special treatment or tests, it was surgically removed by an rather bored and pompous surgeon with no special aftercare.
So, what more can I say, except that more cancers and other illnesses followed it.

meyati

My face cancer---it really doesn't seem to have a name. Nobody recognized it as a cancer.

I had experimental radiation with a 50% chance of dying from radiation poisoning. What more can I say?

po18guy

Some indication may be provided by the statistics amassed by the National Cancer Institute. The number of new cases per year for "common" cancers is set (arbitrarily) at 40,000. Cancers below that number are, by definition, "rare."
https://www.cancer.gov/types/common-cancers
Information regarding rare cancers may be found here:
https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/about-rare-cancers

meyati

What get me is that medical professionals say---Are you sure? I've never heard of that. It doesn't make sense (what cancer does make sense?) i've never heard of anything like that. I'm not finding anything about it online, etc.

I say--maybe it's because people don't survive for more than a few years. It is called rare because because not very many people have it. There really isn't a treatment, and doctors and clinics don't want these patients near them- and I have several stories of my own, in attempts to run me out---Like 3 appointments within the same area, in the same day and hour. and the appointments were in different parts of the city. When I called to reschedule, I was told that I wasn't cooperative, so I couldn't be a patient. My face was swollen covered with stitches, and my family took me in person- where we ranted- and the other patients were saying--What's wrong with you- give her another appointment for god's sake. --So I was able to have the visit with each doctor. Which brings me to another reason- it's painful and being told it isn't survivable- most people commit suicide.

meyati

NM is still sort of rural- and when I say same area, I mean that I'm not traveling to a different city or county- all of my appointments were within Alb city limits.

po18guy

A "Rare" cancer does not necessarily mean an aggressive, dangerous cancer. It may be a very unusual cancer which follows an indolent course. Naturally, some rare cancers are also aggressive, but mot always. What it does mean is that we, as the patient, must seek out an oncologist or hematologist who is familiar with that type, no matter ho rare it is.

I have had two rare and aggressive T-Cell non-Hodgkin's Lymphomas. So rare that very few oncologists or hematologists have ever seen a case outside of a textbook. Neither a pathologist nor a seasoned oncologist thought I had a malignancy at all. In truth, I was at stage IV with too many tumors to count.

For this reason, I always recommend that those with a diagnosis, or not yet diagnosed, travel if necessary to a National Cancer Institute designated comprehensive cancer center. Doing so literally saved my life.
https://www.cancer.gov/research/nci-role/cancer-centers/find

meyati

po18guy---each cancer must be treated for what it is. Congressman Schiff-passed in the mid-90s, had a small stage 1 Squamous Cell Cancer on the tip of one ear. They took it off, gave him chemo for precautions, and it went like a wild fire through his body. he was buried 18 months later. Specialists came from Germany and Israel and treated him. He was a good Congressman and a true friend to many.

it just does not help if a person has something that nobody has a name for. It took 2 years in labs to find out what family it was in- an odd cousin of Gorlin Syndrome.

jdub54

Rare Melanomas do not get treated differently than regular old skin-cutaneous-melanoma, but should. They should be considered orphan and rare diseases, but still get data gathered under the overall melanoma umbrella. They are frequently under or mis diagnosed. I know thos personally. Even the ICD-11 lists them only within the overall melanoma 'bloc", even though they have way worse prognosis, few effective treatments, most that don't work as well on them, etc. Acral Melanoma is bad enough as a rare one; but the much more rare MUCOSAL MELANOMA is really problematic, starts internally on wet pigmented tissues, and even the currently approved immuno therapies have a limited verified success rate. I'm one of 100 US cancer patients in the Harvard NEER study (succinctly, to discover why the heck are you alive?), I am a patient advocate on a just started DOD/VA project with Harvard to define ALL melanoma risks, and I am an oversight committee member for the RARE Registry, now up and running, to gather enough data-including tumor and patient genetics- from this very deadly cancer, to be able to have EFFECTIVE and productive research. Only about 700 new cases of Mucosal Melanoma are diagnosed annually in the USA. If you have Acral or Mucosal Melanoma, please help us grow the data at https://www.raremelanoma.org/

po18guy

By the numbers, I have had three rare caners and am currently in my 6th remission. Peripheral T-Cell Lymphoma - NOS X3, Angioimmunoblastic T-Cell Lymphoma X2, and 20q deletion Myelodysplastic Syndrome (MDS) X1. Interestingly, all three were present at the time that transplant was decided upon.