Sunday, June 16, 2013

Hello, I'm new here. Doctors found a partially calcified 6cm GIST outside of the stomach. What causes this?

Hello, I'm new here. Doctors found a partially calcified 6cm GIST outside of the stomach. What causes this? Has anyone treated it successfully naturally without surgery/drugs?
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  • Beverly Shirts Surgery is your best bet for a cure. Here is some good information for you. I'm running out now but will check with you later. http://www.gistsupport.org/for-new-gist-patients.php If you only have one tumor and it's removed completely, you may not need chemo drugs at all.

    GIST Support International - For New GIST Patients
    www.gistsupport.org
    Newly diagnosed GIST patients learn here what to ask your doctor, about pathology reports and tissue samples, finding good care for GIST cancer.
  • Brown Rice Thanks. From the site: "Random genetic mutations are the apparent cause of GISTs." I doubt surgery cures genetic mutations. If you remove it, won't it simply return if the cause isn't addressed? What causes those mutations in the first place?
  • Cathy Freeman I've been down this road and am still in the midsts of all the information . . . Do you have a genetic mutation. Mine is SDHB and the meds to date aren't known to be effective on SDHB mutations. I'm going to the NCI in a few weeks for their annual Pediatric Gist Clinic as well as a Paraganglioma Clinic which is the rare tumors my father and aunt died of (and what I inherited). I'll be talking to head doctors but from my knowledge to date surgery is my best option. I had 1/3rd of my stomach removed 5 years ago and 2/3rds of my liver last year (which grew back). The next set of tumors, for me, could appear anywhere in the torso or head. I don't think in my case there is a medication that has proven itself thus I take it one day at a time with some emotional issues hanging around the curtain edges. My genetic mutation wasn't random. It was inherited from my father and his sister also had it (all the children in his family and his sister didn't have chlldren). For me surgery was my best bet and gave me a few years between tumors.
  • Beverly Shirts Mine has never returned, and I've never been on Gleevec or any other drug. 12 1/2 cm stomach primary tumor, 5 per 50 mitotic rate. My only surgery was in August of 2000.
  • Michele Arsenault I honestly can't think of anyone who has not treated their GIST (or any other cancer) without surgery, medication or a combination of both sucessfully.
  • Mandi Lobisser Beverly do you get scans? I'm still on the fence about Gleevec.
  • Brown Rice Help me understand the cause: Tumors are caused by genetic mutations, which is different than DNA damage. Is that correct? What causes these random or inherited mutations? And shouldn't DNA repair genes have the ability to correct mutations and maintain genomic integrity?
  • Beverly Shirts Mandi Lobisser I'm at yearly scans right now, but mostly to monitor two other issues, completely non GIST related. I'm deciding now about continuing them. Brown Rice no one knows what causes most cancers. Please check on our site for all of the genetic "what causes this" science information, written by scientists who explain it well. I'll also put out the bat signal for Marina Symcox, a PhD in such things, and a GIST patient as well. She's in Oklahoma though, so I am not sure if she has power. Start here and follow the links. You can also type in search words, such as "causes" or "mutations" etc. on that site to bring up more info. http://www.gistsupport.org/for-new-gist-patients.php If your tumor is smallish, and yours is, and the mutation rate is low, surgery has a very good chance of curing you. Where are you being seen?

    GIST Support International - For New GIST Patients
    www.gistsupport.org
    Newly diagnosed GIST patients learn here what to ask your doctor, about pathology reports and tissue samples, finding good care for GIST cancer.
  • Brown Rice Beverly Shirts thanks, but I couldn't find it on that site. But I found on genetics.Utah.edu that genetic mutations are caused by chemicals, radiation, and errors when the DNA is replicated. The cause of these errors are caused by DNA damage during cell division. Basically, it comes down to DNA damage? If so, what would repair DNA damage and correct mutations? I'd love to hear from Marina Symcox !
  • Beverly Shirts She will check in. http://www.gistsupport.org/about-gist/what-is-gist.php?searchresult=1&sstring=what+causes+gist%3F#wb_98 I just typed in "what causes GIST?" on our site and SEVERAL links came up. This is one.

    GIST Support International - What is GIST?
    www.gistsupport.org
    Gastrointestinal stromal tumor (GIST) is a very rare cancer affecting the digest...See More
  • Beverly Shirts There is much more at that link, but here is one part. 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).
  • Brown Rice Yeah, that's what I found earlier and quoted from the site: "Random genetic mutations are the apparent cause of GISTs. " but no information on what causes genetic mutations, specifically.
  • Brown Rice Thanks! I also found this helpful http://learn.genetics.utah.edu/archive/sloozeworm/mutationbg.html and http://en.wikipedia.org/wiki/Mutation#Harmful_mutations

    What Causes DNA Mutations?
    learn.genetics.utah.edu
    Ultraviolet light, nuclear radiation, and certain chemicals can damage DNA by altering nucleotide bases so that they look like other nucleotide bases.
  • Beverly Shirts It's kind of a s*** happens thing really. What causes gene mutations?
    Chemicals and radiation can damage genes. However, most mutations occur when the cell makes errors as it copies its genes. Ge    ...See More
  • Brown Rice "A DNA damage can cause an error when the DNA is replicated, and this error of replication can cause a gene mutation that, in turn, could cause a genetic disorder. DNA damages are repaired by the DNA repair system of the cell.
    Because DNA can be damaged in many ways, the process of DNA repair is an important way in which the body protects itself from disease.' http://en.wikipedia.org/wiki/Mutation#Harmful_mutations

    Harmful mutations - Mutation - Wikipedia, the free encyclopedia
    en.wikipedia.org
    Changes in DNA caused by mutation can cause errors in protein sequence, creating partially or completely non-functional proteins. Each cell, in order to function correctly, depends on thousands of proteins to function in the right places at the right times. When a mutation alters a protein that play...
  • Brown Rice Is it caused by an impaired DNA repair system?
    In my case, 'chemicals/radiation' exposure, would probably be the main cause of DNA damage. I was tested with high mercury and arsenic levels.
  • Brown Rice Please correct me if I'm wrong. So in conclusion, GIST is caused by random or inherited genetic mutations caused by errors in DNA replication from DNA damage either by radiation, chemicals, or "many other factors" that should be repaired by our DNA repair system, unless that system is also damaged.
  • Beverly Shirts I'll leave it for Marina Symcox, she is wonderful at explaining complicated science in understandable terms. As the first sentence says on our site, no known cause exists for GIST. As it says on those pages above and on our site, it's random, and most are born with some kind of defect, and defects are also the way species evolve. Radiation and chemical exposure, as far as I know, has no known correlation to GIST.
  • Beverly Shirts You may find something here as well. http://gistsupport.medshelf.org/Marina_Sez
    Marina Sez - GIST Support
    gistsupport.medshelf.org
    Marina Symcox, PhD is a born teacher. Trained in biochemistry, she turned her co...See More
  • Brown Rice That's a bit more helpful, but still doesn't explain what causes these mutations? And what is the role of epigenetics in turning on or silencing these mutations? "The genome dynamically responds to the environment. Stress, diet, behavior, toxins and other factors activate chemical switches that regulate gene expression." http://learn.genetics.utah.edu/content/epigenetics/

    Epigenetics
    learn.genetics.utah.edu
  • Marina Symcox Tumors can partially calcify. Laying down calcium deposits is the way the body sequesters off dead tissue. Even growing tumors may develop dead zones that show signs of calicification. A tumor that has been treated well with Gleevec may show much calcification over the course of years as the tumor remains under control.
  • Marina Symcox DNA damage can lead to mutations, just like stumbling around with your fingers on a keyboard can lead to typographical errors. While the cells have mechanisms to repair damaged DNA, sometimes the repair does not happen, and at some point both strands of the DNA are compatible with the change, and it becomes heritable to all the daughter cells. The mutations in GIST are not usually heritable, and are not passed down through a family. Instead they are accidental mishaps in one cell, and all of the daughter cells from that one cell will carry the mutation. The rest of the cells in the body will not have that mutation. Very rarely there are heritable mutations in GIST (egg and sperm carry them and all the cells in the body have the mutation.) This is extremely rare, only a handful of families in the entire world have heritable GIST.
  • Marina Symcox You will never know what caused the mutation that lead to your GIST. While we can blame toxins in the enviroment, the oxygen that we breathe to live also has the capacity to damage DNA. The role of epigenetics in cancer is important, but not as well delineated as the role of DNA mutations. The GIST that forms in young women seems to be driven not by mutations but by epigenetic siliencing of key genes. For now, adult GIST is mostly considered in terms of mutations and not epigenetics, but epigenetics has a role in all types of cancer.
  • Brown Rice Thanks Marina Symcox! Can you expand on this statement: "The GIST that forms in young women seems to be driven not by mutations but by epigenetic siliencing of key genes. " What key genes are silenced and where are the studies on this? I see a study here for example on how certain epigenetic changes predict GIST behavior http://meeting.ascopubs.org/cgi/content/abstract/24/18_suppl/9542
    The contribution of epigenetic and genetic changes to predict gastrointestinal stromal tumors...
    meeting.ascopubs.org
    Instituto Nacional de Cancer, Rio de Janeiro, Brazil; Consultoria em Patologia, Botucatu, Brazil; Novartis Oncology, São Paulo, Brazil
  • Brown Rice Given that epigenetic changes predict GIST behaviour, does that mean that they can be 'turned off' or 'turned on'? My understanding of epigenetics is 'harmful' mutations (whatever the cause may be -environmental toxins or oxygen) can be silenced or activated by histone inhibitors for example, is that correct?

    "Inappropriate epigenetic activity plays a significant role in cancer development but, unlike DNA mutations, which are permanent, epigenetic changes can be reversed. This means that it may be possible to find a way to regulate inappropriate epigenetic activity or to get a gene that is inappropriately expressed due to epigenetic changes to begin functioning normally again. The team is using a combination of two drugs (a DNA-demethylating agent, and a histone deacetylase inhibitor) to reverse the epigenetic modifications that inappropriately turned genes on or off in cancer cells. " http://www.aacr.org/home/public--media/stand-up-to-cancer/su2c-dream-teams/bringing-epigenetic-therapy-to-the-forefront-of-cancer-management.aspx

    I understand that histone deacetylase inhibitors has been used as a therapeutic strategy for GISTs.
    http://carcin.oxfordjournals.org/content/33/9/1674.abstract

    Bringing Epigenetic Therapy to the Forefront of Cancer Management
    www.aacr.org
    Researchers have discovered that there are additional layers of material outside...See More
  • Marina Symcox While there are drugs that can affect the epigenetic or gene silencing aspect of DNA, these drugs are not specific for what is wrong in your GIST. HDACi are a class of such drugs.
  • Brown Rice Marina Symcox What I'm trying to understand is can the genes involved GIST be silenced or activated? You mentioned earlier that "The GIST that forms in young women seems to be driven not by mutations but by epigenetic siliencing of key gene." Does that mean they can be 'turned on/off' in epigenetic terms? Sorry for all the questions, I appreciate this dialogue and it has helped me gain a better understanding.
  • Marina Symcox I don't think there are any drugs that offer a fine level of control for turning off or on aspecific "GIST genes." GIST that develops in young females primarily involves a loss of function of the succinate dehydrogenase gene, and it seems that a build up of the metabolic products caused by this defect will impact the proteins that regulate the methylation level of DNA...so over time the cells have too much gene silencing of tumor suppressor genes.



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