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Post by shevy on Oct 16, 2019 17:45:47 GMT
I am the 4th generation on my maternal size to have breast cancer. My Mom, Grandma, sister and I went through genetic counseling 10 years ago and my Mom had no positively mutated genes, therefore my sister and I were not tested. The geneticist agreed that it was likely genetic, just not a known gene yet. I had an abnormal biopsy, DCIS Stage 0 and had a mastectomy. My current chances of breast cancer are about 2%.
In August my Mom was diagnosed with stomach cancer. She is the 3rd generation in her family with gastro-cancer. We met with the geneticist today and my Mom is being tested for all 47 or 48 (I forget which one it was) due to the secondary onset of cancer.
However, because I also have several different cancers on my Dad's side of the family and the breast & gastro-cancer on my Mom's side, she suggested that I get a referral and have my test done separate of my Mom. For my sister (who has been cancer free) she suggestively testing only if my Mom was positive for a gene.
If my test if positive, stomach cancer only has recommendations for yearly colonoscopy and an endoscopy every 5 years. So there is nothing 'for sure' that could be done to cut my chances. Would you get tested?
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Post by bbkeef on Oct 16, 2019 17:49:12 GMT
I think knowledge is power. The more info. you are armed with, the better prepared you are to change anything in your power-lifestyle changes, frequent monitoring, etc.
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Post by Basket1lady on Oct 16, 2019 17:54:09 GMT
Only if you need the genetic testing to prove the need for the colonoscopy and endoscopy. Otherwise, probably not. Well, I guess it would depend on the the cost of the test.
We did have genetic testing done when I was pregnant with #1 upon the recommend our perinatologist. Luckily, it came back negative for everything they were concerned about.
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scrappinghappy
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Post by scrappinghappy on Oct 16, 2019 17:59:49 GMT
In the USA, not a chance. I don't think it can be now, but who knows if in the future it can be held against you as a pre-existing condition. Our health care is so screwed up
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craftykitten
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Jun 26, 2014 7:39:32 GMT
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Post by craftykitten on Oct 16, 2019 18:04:27 GMT
Can you get the gastroscopy/endoscopy done without the genetic confirmation?
I did have genetic testing, and I do have a genetic mutation. I've already had cancer 3 times, but the gene they found was a TP53 mutation. There is nothing preventative that can be done, but they recommend annual MRIs of the body and head. I had one done, and they found that my previous cancer had already metastasized into a tiny brain tumour, which I have had treated. If I hadn't had the mutation, I wouldn't have had the scan until I started having symptoms, and the outlook could have been very different.
It's still not great, but for me, knowledge is power. But we have socialised health care so it doesn't affect how much I pay, for example. For you, it might be different.
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TXMary
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Post by TXMary on Oct 16, 2019 18:10:12 GMT
I did have genetic testing done but it was after I was already diagnosed with breast cancer. I was negative for BRCA 1 and 2, which were the only known genes at the time I had cancer. I do have a maternal family history of breast cancer but neither I nor my oncologist felt my cancer was related to that since mine was Triple Negative and our family history cancer was ER/PR positive. But whoever knows?
My non-blood related uncle died of a disease that is highly hereditary and none of his sons chose to be tested for the gene because if they tested positive for it, there was absolutely nothing that could have been done to stop it and they didn't want to know under those conditions. I don't blame them in that case. I wouldn't have tested for it either.
I do believe strongly that knowledge is power and if it's something that I can do something to change the outcome, then yes, I would absolutely do the testing.
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Post by scrapmaven on Oct 16, 2019 18:12:02 GMT
Absolutely I would. My sister had the BRCA test and it applies to both of us, since we have the same bio parents. She's going to be tested for some other stuff, too. I think it's important. If you can prevent it or at least get checked more often due to risk it can save your life.
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Deleted
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Mar 29, 2024 15:37:19 GMT
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Post by Deleted on Oct 16, 2019 18:31:00 GMT
I have a huge family history of cancer. It has been suggested that I get tested but so far my insurance will not approve it. We are doing the referral, denial, appeal, denial dance.
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Post by crimsoncat05 on Oct 16, 2019 18:34:24 GMT
I did get genetic testing- I had ovarian cancer, my sister was diagnosed with breast cancer at 39, we have a history of other cancers in my immediate family, and other extended family members (aunts, cousins) who have breast cancer. I figured it would be a good idea, as much for them as for me. If there was any sort of hereditary link for any of it, I wanted to know.
we have some very good friends who have the breast cancer gene mutation in their family-- not everyone wants to get tested, but if it was me, I would want to know.
ETA: even if I hadn't had cancer myself, I think that the genetic counselor I spoke to said a first-degree relative (my sister) would have made it approvable by my insurance. Since it was pre-approved, I didn't have to pay anything, but she also told me that if it wasn't approved, the company would have charged max $150 or $200. I was prepared to pay for it out of pocket if necessary. And yeah, I did think about what might happen in the future with the knowledge being out there, but I wanted to know.
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Post by shevy on Oct 16, 2019 18:45:50 GMT
In the USA, not a chance. I don't think it can be now, but who knows if in the future it can be held against you as a pre-existing condition. Our health care is so screwed up Currently it's illegal to charge differently for insurance and insurance cannot deny paying for things based on the outcome of the test. However, life insurance can be denied based on a positive test.
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Post by crimsoncat05 on Oct 16, 2019 19:05:16 GMT
currently, maybe it's illegal- but Lord only knows what might change depending on how evil the political party in power decides to be and what they might get passed.
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Post by malibou on Oct 16, 2019 19:31:57 GMT
I have a tremendous family history of burst brain aneurysms. I didn't have genetic testing per say, but the doctor did recommend I do an MRA to see if I had any aneurysms that could possibly burst. I did have the MRA done. Luckily I had none. My 4 siblings think I'm a nutter for having it done, because what was I going to do if they found any. I feel better knowing.
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Post by bc2ca on Oct 16, 2019 19:32:18 GMT
I think knowledge is power. The more info. you are armed with, the better prepared you are to change anything in your power-lifestyle changes, frequent monitoring, etc. I would definitely have the testing done.
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TheOtherMeg
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Post by TheOtherMeg on Oct 16, 2019 19:33:39 GMT
currently, maybe it's illegal- but Lord only knows what might change depending on how evil the political party in power decides to be and what they might get passed. Also, they may say you're not being denied or charged differently because of test result A, and that it's really because of condition B or test result C or you chose doctor F or treatment L or group practice P or hospital Q.
I've waded through enough insurance BS to not trust what they say about anything, current or not. I keep notes and emails and letters and they still deny they said they'd cover something. I've even had insurance people say, "Yes, I see you were sent confirmation that this procedure was covered, but it was a mistake and your policy actually does not cover it." (After escalating it, I was able to get it covered "just this once," but this sort of thing has happened more than once.)
If I could keep the results to myself (and I'd pay for the testing in order to keep the results from the insurance company), I'd be more than happy to have genetic testing done.
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Post by crimsoncat05 on Oct 16, 2019 19:37:33 GMT
I have a tremendous family history of burst brain aneurysms. I didn't have genetic testing per say, but the doctor did recommend I do an MRA to see if I had any aneurysms that could possibly burst. I did have the MRA done. Luckily I had none. My 4 siblings think I'm a nutter for having it done, because what was I going to do if they found any. I feel better knowing. a former co-worker of my DH had the same thing; the man's brother had one. I don't remember if the brother died or not (I think he may have), and my DH's co-worker and the rest of his siblings got medical testing to see whether they had any aneurysms. That way they would know what to keep an eye out for and be monitored in the future. I don't think it's nutty; I think it's smart.
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Post by dewryce on Oct 16, 2019 19:41:08 GMT
I am the 4th generation on my maternal size to have breast cancer. My Mom, Grandma, sister and I went through genetic counseling 10 years ago and my Mom had no positively mutated genes, therefore my sister and I were not tested. The geneticist agreed that it was likely genetic, just not a known gene yet. I had an abnormal biopsy, DCIS Stage 0 and had a mastectomy. My current chances of breast cancer are about 2%.
In August my Mom was diagnosed with stomach cancer. She is the 3rd generation in her family with gastro-cancer. We met with the geneticist today and my Mom is being tested for all 47 or 48 (I forget which one it was) due to the secondary onset of cancer.
However, because I also have several different cancers on my Dad's side of the family and the breast & gastro-cancer on my Mom's side, she suggested that I get a referral and have my test done separate of my Mom. For my sister (who has been cancer free) she suggestively testing only if my Mom was positive for a gene.
If my test if positive, stomach cancer only has recommendations for yearly colonoscopy and an endoscopy every 5 years. So there is nothing 'for sure' that could be done to cut my chances. Would you get tested?
A colonoscopy will remove any polyps, not just leave them, so they can’t grow to be cancerous. It’s not just to have a look see. My last time they removed many typical polyps that usually don’t cause a problem, and 3 or 4 of those that are the ones that sometimes develope into cancer. They were still small, and it had only been about 1.5 years since my previous colonoscopy where they removed 9 of the typical ones, 1 pretty large. So it definitely cuts your chances. Finding out sooner always gives you better chances. So both of these procedures are very helpful. Will your insurance cover them without the testing? My first was covered when I was only 45 because of my father’s diagnosis. My others are because of the polyps. I am currently trying to decide if I should get the testing done because he had stomach and colon cancer and that combo indicates there might be a strong genetic cause and if I have it, am predisposed to a handful of other cancers. I am wavering for 2 reasons. I have a serious mental anxiety issue with getting cancer, and I’m concerned how the results will be used against me in the future for health insurance. I have bipolar disorder so life insurance is an issue anyway.
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~Susan~
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Post by ~Susan~ on Oct 16, 2019 19:57:37 GMT
I would and I have. After I was diagnosed with breast cancer, I and the dr wanted to know if I had the BRCA genes because I have two daughters that it would affect. Fortunately, I tested negative. I was told that I most likely have a bad or "dirty" gene that has not been discovered yet that caused my TNBC.
I also found out that I carry a gene for colon cancer. I have no idea where that came from because as far as I am aware, no one in my family has ever had colon cancer.
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Post by shevy on Oct 16, 2019 20:08:13 GMT
I would and I have. After I was diagnosed with breast cancer, I and the dr wanted to know if I had the BRACA genes because I have two daughters that it would affect. Fortunately, I tested negative. I was told that I most likely have a bad or "dirty" gene that has not been discovered yet that caused my TNBC. I also found out that I carry a gene for colon cancer. I have no idea where that came from because as far as I am aware, no one in my family has ever had colon cancer. You can have the gene and not have the disease associated with it. It's just that usually someone with that gene is more likely to have issues at some point in life.
In order to do this, I'd need to travel to another area, likely use a made up name and pay cash not only for a doctor to refer me to get testing, but also to meet with a geneticist to have the actual test ordered, pay for the testing and have it sent to an address that's not connected with me. With all the electronic charts now, it's really hard to keep something confidential. At least in the area I'm in. All the clinics are connected by groups and those groups are connected to the hospitals. Anyone can see my medical history at almost any place I go, other than a minute clinic and I'm sure they can see some of it by now too.
In 1998, when they first started testing for BRCA, health insurance could not only deny the test, but deny coverage afterwards. So my family and I went to a meeting about how to get testing done on your own. Back then, everyone was still paper charts are it was just using an alias and general delivery mail.
It sure doesn't make sense to me. A: you can find out someone may cost you millions of dollars in billing because of needing treatment for cancer B: you get tested and if positive, taker the corrective action and be healthy the rest of your life. Seems like B is the better option for everyone, including the insurance companies. But somehow, they sure do make it difficult.
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Post by paigewh on Oct 16, 2019 20:15:55 GMT
Yes. ABSOLUTELY! My aunt had ovarian and breast cancer, so I had a test done before my hysterectomy. To make a long story short, instead of just testing me for BRCA, the doctor offered the Myriad myRisk test, and we literally got the test results back as I was being wheeled into the operating room. When I was in recovery, they told me I was negative for BRCA, but positive for some other gene mutations. I have cdkn2a (p16ink4a) -Melanoma/Pancreatic Cancer Syndrome and MUTYH (a Colon cancer gene mutation). My Great-Grandfather had Melanoma (this was in the 30s), but that's the only relative that had any of those cancers. I go twice a year for full body checks and just started getting MRIs for Pancreatic Cancer. I have had so many atypical moles removed - I can't even tell you how many. I have a 70% chance of getting Melanoma and a 27% higher chance of getting Pancreatic Cancer. My oldest son tested positive, while my youngest tested negative. My middle needs to be checked. I am so glad I know about my risk, but wish I would have known years ago. The only thing that is hard for me is that there aren't any support groups or FB pages for people with this mutation. There are lots for BRCA, but I believe it's more common than the mutation I have. ❤️
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Post by refugeepea on Oct 16, 2019 22:21:08 GMT
If I could afford it, possibly. With that type of cancer, it sounds like you know what preventative measures to take.
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theshyone
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Post by theshyone on Oct 17, 2019 6:01:07 GMT
I have and I did and I was positive. After my cardiac arrests long qt Syndrome was thought to be the cause, genetic testing was suggested after seeing a genetic counsellor. I chose to do it, I had just beat death, but each of my children had a 50/50 chance of inheriting it. We were warned it could affect them in different ways going forward. But as parents we chose to test a 9&12 yo. The 9 yo was negative the 12 yo positive, she has successfully been treated and not had cardiac events that threaten or end her life. My mother was tested and she was positive and now safer being treated. . My oldest sister was genetically tested was positive and is now treated. Unfortunately prior to my next oldest sister being allowed to get her genetic testing, she had a cardiac arrest and ended up with a much more severe brain injury than mine. If genetic testing laws were different, and quicker, she may still be alive. Cardiac patients with heart Arrythmia conditions in the USA face issues in the USA and are dying because of it,
I do wish I could get the colon cancer testing though. My grandmother died very young from it, my mom is slowly dying from it, my one sister has had two and a half feet of intestine removed with precancerous cells. My late sister had chrohns disease. My other sister and I have ongoing unspecified gi issues. A genetic colon cancer test would lower my anxiety greatly, or make my decision to get bagged much easier.
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hannahruth
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Post by hannahruth on Oct 17, 2019 8:24:11 GMT
My DH has a genetic eye disease and we had genetic counselling and testing as there was a possibility that any children we had in the future might have been affected so we wanted to know what our choices were.
We would do it again in a heartbeat.
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Post by AussieMeg on Oct 17, 2019 9:57:22 GMT
Yes I certainly would. I've already had genetic testing - when I was planning to become pregnant I had testing to see if I am a carrier for CF, as my sister had CF. I am a carrier but luckily my DSO came up negative for all identified mutations.
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Post by elaine on Oct 17, 2019 10:25:53 GMT
Once you have been diagnosed with cancer, genetic testing won’t have any additional impact on your insurance (because you are now screwed) - health or life - so it was a no-brainer for me to be tested for the BRCA mutations. Because I am Ashkenazi Jewish, they strongly recommended it when I was diagnosed with my breast cancer.
If I had a family history of breast cancer, I would have had the test done earlier, but I am the first in the family.
My son had to be tested to confirm his Osteogenesis Imperfecta - and he was positive for a mutation that causes type IV. They then tested my husband and I for that mutation. Negative for us, so his was a spontaneous mutation. OI is a disorder that can only be definitively diagnosed by genetic testing, so we didn’t have a choice.
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Post by crimsoncat05 on Oct 17, 2019 16:00:39 GMT
I do wish I could get the colon cancer testing though. My grandmother died very young from it, my mom is slowly dying from it, my one sister has had two and a half feet of intestine removed with precancerous cells. My late sister had chrohns disease. My other sister and I have ongoing unspecified gi issues. A genetic colon cancer test would lower my anxiety greatly, or make my decision to get bagged much easier. why can't you? this type of family history sure sounds like genetic testing should be covered, due to risk factors. Or do the insurance companies say that there isn't anything hereditary about this type of cancer? if so, that's lame. I agree with the previous poster who said you'd think insurance companies would rather people get tested if it would lead to taking preventive measures instead of having to pay out for more expensive TREATMENT of the disease, whatever it is.
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Post by pjynx on Oct 17, 2019 18:37:26 GMT
Of my mom's siblings (10 kids total), 3 of them have had breast cancer (1 of her sisters has had breast cancer 3 separate occurrences and yet that person tested negative for the gene). 3 of my mom's brothers and dad have had colon cancer. A couple brothers have had other cancers as well (stomach, kidney). One brother alone has had breast, colon, stomach and kidney. That brother's son is currently being evaluated also for kidney cancer.
So yeah, I got tested. Came up negative for any mutations (and thankfully, none that were even "questionable" aka "not yet known").
Pam
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Post by PNWMom on Oct 18, 2019 2:32:17 GMT
Absolutely. I had breast cancer at age 35 (triple negative), so I was tested for BRCA1 and 2 right at the time when the Supreme Court ruled you could not patent a gene (and therefore ANYone could build a test to look for BRCA, instead of just one company at the time). Testing prices dropped within a matter of months from thousands of dollars to just a few hundred.
I have a BRCA1 mutation. I had my mom tested through Color genomics online to confirm that she also had the mutation. It was $200 and they don't go through insurance at all. ANy family member who's a first degree relative (sibling, child, parent) can get tested for only $50 when there is a known mutation. In a lottery ticket level twist, my dad also has a BRCA mutation (BRCA2 on his side), and both were passed down in my family. My older sister and I have BRCA1 mutations, and my younger sister has a BRCA2 mutation. My brother has not yet been tested.
Knowledge is power. My mom has a genetic eye disease and we would totally have tested for that if it had been passed to me (it was not). We did IVF and you can do preimplantation genetic diagnosis (PGD) to test embryos for particular diseases so you have the option of implanting an embryo that does NOT carry a specific disease. We spent $$$ to do this but ended up with a surprise pregnancy and another one with an untested (for BRCA, anyway) embryo after a failed IVF transfer with the tested embryo. It's amazing what science can do these days.
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ModChick
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Post by ModChick on Oct 18, 2019 3:11:12 GMT
I have a tremendous family history of burst brain aneurysms. I didn't have genetic testing per say, but the doctor did recommend I do an MRA to see if I had any aneurysms that could possibly burst. I did have the MRA done. Luckily I had none. My 4 siblings think I'm a nutter for having it done, because what was I going to do if they found any. I feel better knowing. I’m in this boat. Lost my mom when she was 53 to a brain aneurysm and have other (more distant) relatives with aneurysms so my doc is referring me to specialist to discuss testing. I do but I don’t want to know...
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Post by malibou on Oct 18, 2019 9:26:41 GMT
I have a tremendous family history of burst brain aneurysms. I didn't have genetic testing per say, but the doctor did recommend I do an MRA to see if I had any aneurysms that could possibly burst. I did have the MRA done. Luckily I had none. My 4 siblings think I'm a nutter for having it done, because what was I going to do if they found any. I feel better knowing. I’m in this boat. Lost my mom when she was 53 to a brain aneurysm and have other (more distant) relatives with aneurysms so my doc is referring me to specialist to discuss testing. I do but I don’t want to know... My mom burst a brain aneurysm on 31 Dec 1999, when everyone was concerned about what computers were going to do when we turned to 2000, she was 63. Luckily she survived as it was a big one. There are a few things that are wacky, but overall she was very fortunate. One of her sisters had 3 burst aneurysms, the last one got her. Her brother also died from one, as well as all three of her dad's siblings - they all had theirs in their 70th year. I was nervous about what the MRA would find, but was assured that there were things that could help if they knew I had any. My Dr. also said that there are some types of aneurysms that are more susceptible to bursting than others. Armed with that I went into it convinced I was doing the right thing. I hope you can make your way thru the mental part, and have the scan. As well as wishing you that they don't find any.
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momto4kiddos
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Post by momto4kiddos on Oct 18, 2019 11:38:42 GMT
I'm in the camp of knowledge is power. We don't have a big family history of cancer, but one side has had a bit of colon related issues (cancer included.)
Because of that history when I became anemic a couple years ago, my primary care wanted an early colonoscopy done (I wasn't 50 yet so it was considered early.) Long story short while the anemia was unrelated that colonoscopy picked up an issue, landed me in surgery, but avoided a cancer diagnosis down the road.
Knowing my family history and my MD knowing my family history was key. So yes if I had more reason to have genetic testing, i'd for sure do it.
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