Rare Disease Day 2019

February 28th is Rare Disease Day® .  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
 

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children.

Do you know which diseases are considered rare diseases by the NIH's Office of Rare Diseases Research? The following ovarian cancers are considered rare:

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

To learn more about any of those ovarian cancers just click on the name above. 

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the NationalOrganization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.
 



 If you are on social media and have a rare disease you can use this template and show your stripes on this Thursday , February 28th. 

My stripes are rare. I have _____, a #raredisease. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}

I'll be sharing this blog post as a way to raise awareness. 

Dee
Every Day is a Blessing!

More than Just Epithelial Ovarian Cancer

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When I first heard I had ovarian cancer I didn't know that there were multiple types. I didn't realize that some cancers were on the surface of the ovary , some were in the egg cells and some were on the follicles.  I learned that each of the main types of ovarian cancer had sub-types. Below is a list of the different types of ovarian cancer.

Epithelial Ovarian Cancer ( Forms in the tissue covering the ovary)

Subtypes:

Serous

mucinous

clear cell

endometrioid

transitional cell

Germ Cell Ovarian Cancer ( forms in the egg cells of the ovary)

Teratoma

Mature cystic terotoma

Immature teratoma

Mondermal teratoma

dysgerminoma

yolk sac tumor

embryomal carcinoma

choriocarcinoma

Sex Cord Stromal(forms in the sex cord/ ovarian follicles)

granulosa cell

Thecoma

Sertoli-Leydig

Fibroma

Fibrsarcoma

Sclerosing stromal

Source:John Hopkins Pathology  http://ovariancancer.jhmi.edu/typesca.cfm

It is important that if you are diagnosed with ovarian cancer you know the exact type. The exact type of cancer you have will help determine the best treatment for you.

Dee

Every day is a Blessing!

OC Awareness Month #7 - Types of Ovarian Cancer

What is ovarian cancer ? Ovarian Cancer forms in the tissue of the ovaries the female reproductive glands. We are still not sure how or why ovarian cancer forms.  (Note:Recent research proposed that ovarian cancer forms in the fallopian tubes. ) But not every ovarian cancer is the same as every other ovarian cancer.  The most common form is Epithelial, then Germ cell and then Sex Cord Stromal. Each of these has subtypes.

Epithelial Ovarian Cancer ( Forms in the tissue covering the ovary)

• serous
• mucinous
• clear cell
• undifferentiated
• mixed epithelial
• endometrioid

Germ Cell Ovarian Cancer ( forms in the egg cells of the ovary)

• teratoma
• dysgerminoma
• yolk sac tumor
• embryomal
• choriocarcinoma

Sex Cord Stromal(forms in the sex cord/ ovarian follicles)

• granulosa cell
• Sertoli-Leydig

Source:John Hopkins Pathology (http://ovariancancer.jhmi.edu/home.cfm). The site offers excellent description of each of these different types and subtypes.

It is important that if you are diagnosed with ovarian cancer you know the type . The type of cancer you have may influence the treatment you have.

More on treatment tomorrow.


Dee
Every Day is a Blessing!

Are there really that many different types of Ovarian Cancer?

After writing the last post about CA-125 I started to think about what causes the differences between ovarian cancer tumor cells. Why is cancer antigen CA-125 ,a protein , not elevated (or not being produced at the same level by my cancer tumor cells) as compared to other women who have been diagnosed at the same stage.

When I attended the ASCO meeting, I learned that there are many different subtypes of ovarian cancer. Many more than those I was initially aware of. So I put together a list of the different types of ovarian cancer.

What type/ histology is your ovarian cancer tumor?

Epithelial

• serous
• mucinous
• clear cell
• undifferentiated
• mixed epithelial
• endometrioid

Germ Cell

• teratoma
• dysgerminoma
• yolk sac tumor
• embryomal
• choriocarcinoma

Sex Cord Stromal

• granulosa cell
• Sertoli-Leydig

Check out the source of my list at

John Hopkins Pathology ( http://ovariancancer.jhmi.edu/home.cfm). The site offers excellent description of each of these different types and subtypes.

So it seems that even if you have the most common type of ovarian cancer, epithelial, your cells may be different than a friends since you may have a different sub-type. The ovarian cancer cell type along with the stage is important in determining the type of treatment you will be offered, so knowing that information is important.

I know what subtype I am. What subtype are you? Check your pathology report or ask your doctor. It is good knowledge to have.

Dee

Every Day is a Blessing!