To understand my journey, you’ll have to better understand my disease. After multiple biopsies and tests, it’s been determined that I have an extremely rare and aggressive form of cancer called, Large Cell Neuroendocrine Carcinoma of the Cervix. In fact, it’s one of the most rare and most aggressive forms of cancer. So rare that very few oncologists have ever heard of, seen, or even treated this type of cancer. There is very little known about this diagnosis and no specific funding. There’s not even a set treatment protocol. I AM RARE BUT THERE.
The following information was obtained from the American Cancer Society (cancer.org) and the “Rare But There” NEC website (necervix.com). Please check out these informative websites to learn more about the ins and outs of my diagnosis and to gain knowledge on many other types of cancer.
WHAT IS CANCER?
“The body is made up of trillions of living cells. Normal body cells grow, divide, and die in an orderly fashion. During the early years of a person’s life, normal cells divide faster to allow the person to grow. After the person becomes an adult, most cells divide only to replace worn-out or dying cells or to repair injuries.
Cancer begins when cells in a part of the body start to grow out of control. There are many kinds of cancer, but they all start because of out-of-control growth of abnormal cells.
Cancer cell growth is different from normal cell growth. Instead of dying, cancer cells continue to grow and form new, abnormal cells. Cancer cells can also invade (grow into) other tissues, something that normal cells cannot do. Growing out of control and invading other tissues are what makes a cell a cancer cell.
Cells become cancer cells because of damage to DNA. DNA is in every cell and directs all its actions. In a normal cell, when DNA gets damaged the cell either repairs the damage or the cell dies. In cancer cells, the damaged DNA is not repaired, but the cell doesn’t die like it should. Instead, this cell goes on making new cells that the body does not need. These new cells will all have the same damaged DNA as the first cell does.
People can inherit damaged DNA, but most DNA damage is caused by mistakes that happen while the normal cell is reproducing or by something in our environment. Sometimes the cause of the DNA damage is something obvious, like cigarette smoking. But often no clear cause is found.
In most cases the cancer cells form a tumor. Some cancers, like leukemia, rarely form tumors. Instead, these cancer cells involve the blood and blood-forming organs and circulate through other tissues where they grow.
Cancer cells often travel to other parts of the body, where they begin to grow and form new tumors that replace normal tissue. This process is called metastasis. It happens when the cancer cells get into the bloodstream or lymph vessels of our body.
No matter where a cancer may spread, it is always named for the place where it started. For example, breast cancer that has spread to the liver is still called breast cancer, not liver cancer. Likewise, prostate cancer that has spread to the bone is metastatic prostate cancer, not bone cancer.
Different types of cancer can behave very differently. For example, lung cancer and breast cancer are very different diseases. They grow at different rates and respond to different treatments. That is why people with cancer need treatment that is aimed at their particular kind of cancer.
Not all tumors are cancerous. Tumors that aren’t cancer are called benign. Benign tumors can cause problems – they can grow very large and press on healthy organs and tissues. But they cannot grow into (invade) other tissues. Because they can’t invade, they also can’t spread to other parts of the body (metastasize). These tumors are almost never life threatening.”
WHAT IS LARGE CELL NEUROENDOCRINE CARCINOMA?
“Neuroendocrine tumors (NETs) are neoplasms that are composed of cells which have features of both the endocrine (hormonal) as well as the nervous system. They can be classified as benign or malignant (cancer). These tumors can originate from many different sites in the body, including the uterine cervix.
The cervix is the narrow, lower segment of the uterus (womb) that connects with the upper vagina. Tumors can arise from the outer (ectocervical) or inner (endocervical) portion of the cervix. Approximately 12,000 women in the United States will be diagnosed with cervical cancer in 2012. That means that approximately 1 in 147 women will develop cervical cancer in their lifetime.
There are multiple different types of cervical cancer, named after the appearance of the cells under the microscope. The most common type is squamous cell cancer, accounting for 80-85% of all cervical cancers. The second most common is adenoocarcinoma, which accounts for 15-20% of all cervical cancer. Neuroendocrine tumors account for only 2% of all cervical cancers. Therefore, approximately 100 women are diagnosed annually with NEC of the cervix in the United States.
Four subtypes of NEC have been delineated:
- Small cell neuroendocrine carcinoma
- Large cell neuroendocrine carcinoma
- Typical carcinoid tumor
- Atypical carcinoid tumor
Of these four types, carcinoid tumors, although malignant, are considered to be well differentiated and therefore have a more indolent course and favorable prognosis. Poorly differentiated, or high grade, NEC includes small cell neuroendocrine carcinoma (SCNEC) and large cell neuroendocrine carcinoma (LCNEC). Of the four subtypes, SCNEC is most common and LCNEC second most common of NEC arising from the cervix. Since these two subtypes represent the majority of NEC of the cervix as well as the most aggressive phenotypes, the remaining discussion below will be limited to these two subtypes. In fact, small cell and large cell subtypes behave and are therefore treated similarly, and will be grouped together in the following statements….”