MIA Till Further Notice....

[Koby]

I won't be around much for a while most likely.

We found out today that my sister is ate up with Cancer. She is only 17 years old and they say it's worse than they have ever seen for her age.

She went to the Hospital about 5 o'clock this morning with pains in her abdomen. The doctor thought at first it might be her appendix. However a catscan quickly proved them wrong. So they cut her open and she had tons of whatever it is everywhere to where they couldn't even see her appendix without removing a lot of the stuff.

The doctor took a frozen biopsy and sent it off for test results. They said it will take about 2 days. So until then we won't know what kind of cancer it is, if it can be treated, and if so how it can be treated. They said she must had it for quite some time before they found it because it was really bad.

She had actually been complaining and going to the doctor for the last 4 years for the same symptons but they kept sending her home without even seeing her.. O.o

So anyways, I'll be at the hospital for at least the next few days and maybe even weeks. Hopefully we hear some good news when the tests come back.. My mom is very upset and can barely keep a good face in front of my sister, as they have yet to tell my sister she has cancer. They have to tell her sometime tomorrow, but for now she only knows that they had to remove her appendix.

I got home a few minutes ago, moms staying at the hospital with my sister. But when I got home, I found that my neighbor came over and destroyed our stuff, we were suppose to have a garage sale and all the clothes etc were shredded and cut up, etc... Freakin bastard. I don't care about the shit he tore up but it's just the thought of him being so evil.. He's pulled a gun on my sister in our own yard, came up behind my mom choking her but she ended up beating him up and knocking him out, poisoned all the trees in our yard, caught our yard on fire 2 times in the last year which both times was during a burn ban.. and yet the freaking lazy ass doughnut eating bastards we call cops won't even do anything about it..

Anyways enough ranting about our bastard of a neighbor..

I'm still not taking it very good about the news of my younger sister myself. Cancer is a very bad thing, and as bad as the doctors are making it out to sound.. I am thinking she might not make it... But I'm hoping and praying for her to come through. She's a tough one, a fighter, surely she can prevail.

[Anooxy]

Oh damn. I hope her cancer can be treated... she's my age and it's the worse time for hearing such news. Hopefully she can pull it off. I'll pray as well, because I have nothing else to do.

Seems this is a bad period for us. I also had an Ilizarov surgery to fix my leg (have been waiting for 7 years) and I have to keep the frame (painful) for 6 months.

:/

[Koby]

They have now found out that it is GIST, which is a form of sarcoma cancer.

I did a little research myself and found:

What is GIST?

Gastrointestinal stromal tumor (GIST) is a rare cancer affecting the digestive tract or nearby structures within the abdomen. GI stromal tumor, or GIST cancer, is a sarcoma. Sarcomas are cancers that grow from cells of the body’s connective or supportive tissues such as bone, cartilage, tendons, nerves, fat, muscle, synovial tissue (tissue around joints), or blood vessels. (Most cancers are carcinomas, not sarcomas.)

GIST cancers arise either from cells called Interstitial Cells of Cajal (ICCs) or from less differentiated stem cells or precursor cells that can develop into ICCs. The ICCs are known as “pacemaker cells of the gut” because they send signals to trigger peristalsis, the digestive tract’s muscular contractions that move food along its course.

In the diagram at right you can see the circular and longitudinal muscle layers of the GI tract, with the myenteric plexus layer between the two muscle layers. The ICCs are found in the wall of the gastrointestinal (GI) tract between the GI tract’s muscular layers. They are not related to the cells that line the inside of the tract’s lumen (the hollow tube of the food passageway, shown as the "doughnut hole" in the diagram). The cells lining the lumen form the so-called gastrointestinal epithelium (mucosa) and give rise to the more common forms of gastric, intestinal, and colon cancer.

Because GIST cancers arise from the GI tract wall, they are usually attached to the outside of the involved organ, growing outward; this is sometimes referred to as exophytic. Occasionally a GIST may grow inward through the muscle layer of the GI tract wall and then develop partly inside the digestive tract lumen; this is sometimes called endophytic.

Where does GIST occur?

Primary tumors are in the original site of development, before any spread to other locations. Primary gastrointestinal stromal tumors (GIST cancers) may occur anywhere along the gastrointestinal tract from the esophagus to the anus.

The most frequent site for GISTs is the stomach (about 55%), followed by the duodenum and small intestine (about 30%), esophagus (about 5%), rectum (about 5%), colon (about 2%), and rare other locations.

Occasionally, primary GISTs may develop in the supporting membranes of the abdominal organs (peritoneum, mesentery, omentum), the liver, the pancreas, the ovaries, the uterus, and the prostate. Because primary GISTs in these locations do not arise directly from the GI tract, they are sometimes called “extragastrointestinal” stromal tumors (Reith et al, 2000). When a GIST grows in a location where it is not encased in the peritoneal membranes, it is said to be retroperitoneal. For example, GISTs attached to some sections of the duodenum are retroperitoneal.

Cancer is most threatening when it metastasizes or spreads to additional locations beyond the primary tumor site. In GIST the most common sites for metastasis are the liver and the abdominal membranes (peritoneum, mesentery, omentum). GIST rarely spreads to lymph nodes, but it may occasionally affect local abdominal lymph nodes. Unusual sites of metastasis include lung and bone tissue, as well as pelvic sites such as the ovaries (Belics et al, 2003; Irving et al, 2005; Wingen et al, 2005). Extremely rare sites of metastasis include breast (Igwilo et al, 2003) and muscle tissue.

Is GIST very common?

Gastrointestinal stromal tumor (GIST) is quite rare. Most cancers are carcinomas, meaning that they derive from cells in the skin (or epithelium), either our outer-body skin or the skin-like lining of our internal body cavities and the digestive or gastrointestinal (GI) tract. Most GI tract cancers are carcinomas, such as those commonly known as stomach cancer, colon cancer, etc. GIST is not related to these common GI cancers; it is a sarcoma. Of all adult cancers, sarcomas represent about 1%. GIST is one of the more common of about 50 types of sarcoma. To get some perspective, there are about 1.4 million new cases of cancer per year in the USA (Jemal et al, 2004), and only about 15,000 of these are sarcomas (Borden et al, 2003).

One careful retrospective study of all GI tumor samples for a region in Sweden identified a yearly incidence of 13.8 KIT-positive GISTs per million people (Nilsson et al, 2005). If the same incidence were applicable in the USA, there would be about 4000 GISTs per year in America. In contrast, a study based on cases of GIST reported to SEER cancer registries in the USA estimated a much lower incidence of 6.8 per million (Tran et al, 2005). However, because many cases have been misdiagnosed or not reported, and the SEER data included only those tumors judged to be malignant, this estimate is bound to be too low. Another recent estimate from Norway is higher: 19.9 cases per million in Norway in 1994-2003 (Steigen and Eide, 2006). The available population-based estimates (which count all cases in a defined region over time) are compared in the following table.

Annual Incidence of GIST in Population-Based Studies

Study and Location

Crude Incidence Age-Adjusted Incidence

Nilsson et al (2005)

western Sweden 14.5 per million

Tryggason et al (2005)

Iceland 11.1 per million

Goettsch et al (2005)

Netherlands 12.7 per million

Rubió et al (2007)

region of Spain 9 per million

Mucciarini et al (2007)

region of Italy 14.2 per million 6.6 per million

Mazzola et al (2008)

region of Switzerland 19.6 per million 14.7 per million

Yan et al (2008)

region of Canada 9.1 per million

It is often stated that gastrointestinal stromal tumors are the most common mesenchymal tumors of the GI tract, but this only means that they are slightly less rare than the other tumors in this category. GISTs account for only 1-3% of gastric (stomach) tumors, about 20% of small bowel tumors, and 1% or less of colorectal tumors. The vast majority of tumors in these locations are carcinomas within the tissues lining the GI tract. Most primary care physicians and many pathologists and oncologists go through their entire professional careers without seeing a single GIST. This is important to patients because misdiagnosis can delay the start of appropriate treatment. The physicians at major cancer referral treatment centers, especially those with sarcoma teams, are much more likely to be familiar with gastrointestinal stromal tumor and its treatment.

What causes GIST?

There are no known environmental or behavioral risk factors contributing to GIST. Therefore, patients should not worry that their diet or lifestyle choices contributed to GIST. Random genetic mutations are the apparent cause of GISTs. The majority of GISTs show identified mutations in cell-surface proteins called tyrosine kinase receptors. These mutations are discussed further in the pages on Diagnosis and Pathology Results as well as Mutation Analysis. Most GISTs show mutations in a gene that produces a growth factor receptor called KIT. A few GISTs show mutations in the gene for a closely related receptor for platelet derived growth factor receptor alpha (PDGFR a or PDGFRA). A few GISTs are normal or “wildtype” for both these genes, and the causal mutations or these GISTs have not been identified. Almost all GISTs are sporadic, meaning that the mutations are random occurrences affecting a single individual. However, there are rare examples of GIST running in families due to an inheritable germline mutation (see Familial GIST page). In addition, people affected by neurofibromatosis type 1 (NF1) have an increased chance of developing GIST (see our page GIST in NF1).

Who gets GIST?

Like most other cancers, GIST most commonly affects older people, usually over age of 50 years. The median age at which sporadic GIST is found is about 60 years old. Children are affected very rarely (see pages on Pediatric GIST and Carney Triad). Persons with inactivation of the neurofibromatosis 1 gene (NF1) are more likely to develop GIST than the general population (see page on GIST in NF1) and are more likely to be diagnosed at younger ages. Familial GIST also develops in younger or middle-aged adults (see page on Familial GIST). GIST is found in populations around the world. There is no good information about whether its incidence is more common in certain racial or ethnic groups.

What symptoms can indicate GIST?

Many patients (mostly those with smaller tumors) have no symptoms. Larger tumors may cause symptoms that are generally related to the increased mass being accommodated in the abdominal cavity, and such symptoms would not necessarily be different from those other types of tumors. These symptoms include digestive discomfort, sensations of abdominal fullness, or abdominal pain. Sometimes larger tumors may be detectable as a mass when feeling the abdomen, or as a visible enlargement of the abdomen. Some patients experience vomiting or diarrhea. Bowel obstruction may occur. Sometimes GISTs perforate the stomach or gut lining and bleed into the GI tract, resulting in black or tarry stools, or occasionally in vomiting of blood. Anemia may result from chronic bleeding, leading to fatigue. Sometimes anemia may cause the patient's heart to race (tachycardia). The patient may notice weight loss. Very rarely a GIST may rupture, making its presence known with a medical emergency.

Though such symptoms are possible, most of them are rather indistinct and merely related to the additional mass that is present in the abdomen. Therefore, many GISTs are found incidentally through medical imaging for other purposes or through surgery for other conditions. For example, in Japan endoscopic screening is done to detect carcinoma of the stomach; therefore, gastric GISTs are often found at an earlier stage in Japan because their influence on the stomach lining can be seen with the endoscope.

They are moving her tomorrow to Medical City of Dallas where a trained team is specialized in dealing with this form of cancer. The way they talk she will be going through cemotherapy and radiation treatment, and possibly more surgeries ahead. I can't stay up there with her, so I have to stay at home and tend to my sisters animals, etc.. Mom's going to be staying with her up there, and they may possibly be up there anywhere from a month or more. Once everything is sorted and undercontrol they said she could continue treatment in our home town so that she can be at home.

Mom asked her if that if she had one wish to go anywhere in the world, where would she like to go and she just said "I wanna go home". It's been a lot of tearful moments and breakdowns, etc.. but everyone knows they must stay strong in front of her and be there to support her. It'll be a long battle, and I want to be there when she needs me most.

The doctors said this form of cancer is heriditary which means it comes from certain genes in the family, thus sometime soon my mom, my other sister, and I have to go be tested to see if we have the cancer as well unfortunately.

Mom's already said she'd shave her head too if my sister started losing her hair from the treatments. I'll probably do the same to help her along the way. When my sister heard my mom mention something about that she laughed and said "you'd look funny, don't do that, I can at least wear a baseball cap, you can't" or something along that line. You see my sister is a tomboy and she's always wearing a hat.

[† shinji]

Oh shit. Hope everything goes alright Koby.

My thoughts are with you & your family. Pray that the lord (if there is an almighty power) is merciful towards you and your family.

Just stay strong, no matter how hard it is.

Stick together as a family and i'm sure everything will be alright.

[Anooxy]

I'm sure she will make it. She seems to be an optimistic person. I hope for the best.

Keep us informed btw.

[Koby]

BTW, if anyone wants to send her any good luck or get well soon messages you can PM her account here and I'll be sure she can read them later.

Her username is:

Subtle.Edge

[Linoud]

Ah man, I havent been around in forever and his is pretty bad news I find when I do return.

Sorry to hear about it Koby, my best wishes that she gets better. My mom died from cancer over a year ago now, she had it for eight years, so I think I know a little of how your feeling. I really hope she gets better man.

[Yuna]

Wow....i feel sad now...well i hope she is okay...im pretty sure she well be just fine. Well Koby, i dont know how your feeling , but just keep strong & pray that she well be fine. I shall pray too. My prayers are with you and your family. ^^

[† Koga]

Sorry to here about this man. My Grandfather died from cancer.

[rodney77x]

dang, considering its like 9 months later any update on this topic? My cousin was diagnosed with a wierd form of cancer one year ago, hes 18 yrs old and they originally thought he had bone cancer and since then it has spread to like 5 other spots in his body besides his bones including his lungs they just told him like last month he has around 6 months to live. They still dont know what type of cancer he has considering that it spreads so quickly and randomly.

[Koby]

She just turned 18 on January 31 and recently finished her treatments. All is good at the moment.

She has to go back in a couple weeks for testing to see if it's all gone, and then will have to go back like every 6 months for the rest of her life for check ups to make sure it isn't coming back.