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Post by Deleted on Jul 3, 2016 2:26:38 GMT
Medical peas, I'm wondering if it's possible to make your own appointment with an oncologist or genetic counselor without a doctor's referral? I'm not worried about the insurance aspect, just if those types of doctors will take appointments without a referral. (I'd especially love melissa 's input if possible) I'm not getting very far with my inquiries as a non-established or referred patient.  In early June, I was notified by my uncle that he is the carrier of a specific mutation (Chek2). I need to be tested as there's up to a 50% chance that I have the mutation and could have passed it on to my kids. If I test positive, they will also need to be tested, and then we'll all just have to change our screening frequencies. I know it's not an emergency, or even a huge scary thing, more like a better chance to ensure that we get screenings when we need them. Here's my dilemma. I contacted my family doctor 3-4 weeks ago, and told her about this. Asked if she could do the test. Nope, she would need to refer me to an oncology place. She did that, but I heard nothing until yesterday's mail when I got notice that I have an appointment in late September. That wouldn't be a problem, BUT my son is coming home from very far away for a two week visit from July 15-31. If he needs to be tested, I was hoping to know in time to see if he could get it done. He probably won't be able to come home for another year. I'm sure there's no way I could get tested and get results back fast enough to know for sure if he needs to be tested. I was just hoping that while he's here, I could pay out of pocket if need be for him to get tested, so then we don't have to mess around with how/when he'll get tested. He's young (24) and has a pretty serious gf that we figure he will marry before too long, and I would love for him to at least know this before they start having/planning children, if they do. TIA for any answers  |
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Post by Eddie-n-Harley on Jul 3, 2016 2:58:45 GMT
Is there a reason why your son can't be tested in Taiwan if your test results come back positive?
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Post by Deleted on Jul 3, 2016 3:13:13 GMT
Is there a reason why your son can't be tested in Taiwan if your test results come back positive? I'm just not sure how easy it would be for him to get it done, and as he doesn't make much, not sure how expensive it would be for him. Like I said, it's not the end of the world if we can't get it done for him while he's here, just thought it would be a bit easier and possibly covered on our insurance (still don't know for sure), and more affordable for him if we could get it done while he's home. I can always wire him $ if I have to. Not sure about the availability of the test over there. My doctor's nurse hadn't even heard of it, and acted skeptical until it came up on her computer. Evidently, it's a relatively new finding and test. |
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Post by elaine on Jul 3, 2016 3:22:13 GMT
The results may take months to come back - even for a specific genetic test. Your test wouldn't be done by when your son visits, even if you did it last week.
When we had our son genetically tested for Osteogenesis Imperfecta - it took at least 2 months and our genetic counselor told us that she was surprised that the military had okay'd it because it was a $3000 test. Sadly, he came back with a definite genetic mutation that confirmed the Osteogenesis Imperfecta.
So, it may be costly and it will also take time. I would guess that there is no real rush for your son, though. If he will be stateside again within the next year or so, I would guess that would be okay.
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Post by Deleted on Jul 3, 2016 3:37:18 GMT
The results may take months to come back - even for a specific genetic test. Your test wouldn't be done by when your son visits, even if you did it last week. When we had our son genetically tested for Osteogenesis Imperfecta - it took at least 2 months and our genetic counselor told us that she was surprised that the military had okay'd it because it was a $3000 test. Sadly, he came back with a definite genetic mutation that confirmed the Osteogenesis Imperfecta. So, it may be costly and it will also take time. I would guess that there is no real rush for your son, though. If he will be stateside again within the next year or so, I would guess that would be okay. yeah, I figured the results would be slow. Still not sure about the cost, either. I'm sorry about the confirmation on your son's test  I'm really in no rush, but we're going to be seeing this Uncle while we're back home visiting and I know he's going to ask me if we've had the tests done. He's a (newly retired) doctor and just doesn't understand sometimes that we don't have access to quite the same level of care (especially speed of care) that he does. He lives in a bit of a different world than we do.  He's the kind of person who might try to arrange and pay for something, but his daughter is currently sick, and I just didn't want him to try to start arranging all that. Family dynamics at play here. I know it's not a huge need for a rush. I think I'm probably just going to tell him we're waiting on results and then he'll (hopefully) be satisfied. There, now I know what I'm going to do!  DS is not military (and we're not either), but he is on our insurance while he's out of the country. Talk about out of network, though!  |
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Post by Delta Dawn on Jul 3, 2016 3:48:56 GMT
I have filled out the paperwork to have genetic testing (BCRA1? and ovarian cancer screening). I haven't sent in the paperwork. I am not sure I want to know just yet. I need to get it done, but I am not ready in case the results are not in my favour.
I have nothing more to add other than I am waiting for the right time.
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Post by Eddie-n-Harley on Jul 3, 2016 3:53:41 GMT
Is there a reason why your son can't be tested in Taiwan if your test results come back positive? I'm just not sure how easy it would be for him to get it done, and as he doesn't make much, not sure how expensive it would be for him. Like I said, it's not the end of the world if we can't get it done for him while he's here, just thought it would be a bit easier and possibly covered on our insurance (still don't know for sure), and more affordable for him if we could get it done while he's home. I can always wire him $ if I have to. Not sure about the availability of the test over there. My doctor's nurse hadn't even heard of it, and acted skeptical until it came up on her computer. Evidently, it's a relatively new finding and test. Ah, I see. It may be something worth looking into, though. My perception is that Taiwan is pretty technologically advanced, so the testing might be available, and possibly for less than our whacked-out system here would charge you. |
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Post by Deleted on Jul 3, 2016 3:56:57 GMT
I'm just not sure how easy it would be for him to get it done, and as he doesn't make much, not sure how expensive it would be for him. Like I said, it's not the end of the world if we can't get it done for him while he's here, just thought it would be a bit easier and possibly covered on our insurance (still don't know for sure), and more affordable for him if we could get it done while he's home. I can always wire him $ if I have to. Not sure about the availability of the test over there. My doctor's nurse hadn't even heard of it, and acted skeptical until it came up on her computer. Evidently, it's a relatively new finding and test. Ah, I see. It may be something worth looking into, though. My perception is that Taiwan is pretty technologically advanced, so the testing might be available, and possibly for less than our whacked-out system here would charge you. That could be very true! They are a very technologically advanced and well developed country. DS loves it there. I haven't really talked to him about all this yet (was waiting till he came home, since I just recently found out), but it might likely be easier and cheaper over there. When I asked him if needed me to make him a dentist appointment for a cleaning and check-up while he's home, he said, nope, he'd just had done over there last month |
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theshyone
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Post by theshyone on Jul 3, 2016 4:41:13 GMT
Generally for the heart genetics I'm familiar with you need a doctors referral before getting the testing done. Then the doctors order the kits, and it's sent to other labs to have the testing done. It's a long, time consuming process. Longer in Canada than the USA but still 6 weeks or more at the shortest and six months common.
It's better for you to know your results before getting your kids tested. Sometimes even unnecessary.
Even though I'm Canadian I hear genetic testing discussed from around the world in the heart group I'm in. Your son will be just fine getting Taiwan to do the testing. You will receive a letter from the testing company when you receive your results that you would send to your son, then he would present it to have a official reason for testing.
Be sure you have insurance for life, in place before testing. As well as the kids. Once those test results come back positive it's impossible to get coverage .... For long qt anyway.
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Post by PNWMom on Jul 3, 2016 5:22:41 GMT
I have had genetic testing done (BRCA) through my oncologist, and I have arranged for my mother to have it done withOUT her primary care doctor's involvement. I needed confirmation that I got my mutation from her, because we had a genetic probe built to test my embryos for my BRCA mutation so we could try not to pass the mutation on. My mom's PCP was freaked out about doing the testing and was going to send her to a genetic counselor to have screening done and THEN get a referral for a blood draw. Lots of running around. I ended up just paying about $250 myself out of pocket and getting her tested through Color Genomics. They sent the cheek swab through the mail, and it took I think 3-4 weeks to get the results back. I just looked on the Color Genomics website, and the Chek2 mutation IS one that they test for. I would strongly recommend this company. They were easy to work with, and pretty thorough. You fill out an online form with your medical history and your family's medical history. When your results come in, they include a phone consult with a geneticist if you are interested in that (I wasn't--I have been very well educated on the implications of having a BRCA1 mutation, and we already knew with 99.9% likelihood that my mom had this defect--I just had to prove it to my fertility genetics people). getcolor.com/providers/genes-covered#gene-table |
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Post by PNWMom on Jul 3, 2016 5:25:23 GMT
(also, it looks like Taiwan is on the list of countries they will ship to)
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melissa
Pearl Clutcher
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Post by melissa on Jul 3, 2016 5:26:01 GMT
There is no rush to test your son. This is not an emergency. There's more to this than meets the eye which is why your own family doctor or internist referred you oncology, hopefully for genetic counseling to go along with the blood test. Remember that you need your results to have your son tested and, if you are positive, it is still his decision to pursue testing. It may sound shocking, but not everyone pursues genetic testing. Also, there is more than 1 CHK mutation and there are implications based on how many mutations a person carries. I also know that when there is a positive result in the family, they like to know which specific mutation in the gene the identified person has.
Paying out of pocket for a genetic test can range in the thousands, BTW. It really varies.
I am curious. Does this uncle have cancer or is it a family history of cancer that led to the test? You can prepare in advance for your visit by preparing as extensive of a family tree as you can, including any cancer history and cause of death. It will be very helpful for the counselor.
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Post by mirabelleswalker on Jul 3, 2016 5:27:16 GMT
I have filled out the paperwork to have genetic testing (BCRA1? and ovarian cancer screening). I haven't sent in the paperwork. I am not sure I want to know just yet. I need to get it done, but I am not ready in case the results are not in my favour. I have nothing more to add other than I am waiting for the right time. If you have the gene, the sooner you find out the better. You could lower your risk of breast and ovarian cancer almost entirely with preventive surgery. You will also lower your stress level if you're worrying about something and the tests are negative. |
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Post by PNWMom on Jul 3, 2016 5:39:21 GMT
I have filled out the paperwork to have genetic testing (BCRA1? and ovarian cancer screening). I haven't sent in the paperwork. I am not sure I want to know just yet. I need to get it done, but I am not ready in case they are not in my favour. I have nothing more to add other than I am waiting for the right tie. If you have the gene, the sooner you find out the better. You could lower your risk of breast and ovarian cancer almost entirely with preventive surgery. You will also lower your stress level if you're worrying about something and the tests are negative. Yes... after my cancer and BRCA1 diagnosis, my sisters were tested and one of them has my BRCA1 mutation. She was an anxiety ridden basket case with this diagnosis for about a year. Much more so than me (who actually had cancer). But....she had her ovaries out a few months after she learned of her BRCA1 mutation, and elected to have prophylactic mastectomies the next year. She was literally having panic attacks and a lot of freaking out until she came out of surgery after the mastectomies. I could see the massive weight off of her shoulders that first day, just knowing that her cancer risk had gone from 88% likelihood down to less than 5%. It was absolutely the right decision for her. She struggled mightily in making this decision, but is very much at peace with it now. There is no right or wrong way to manage being a BRCA carrier. Everyone has their own decision to make as far as what to do if you DO have a BRCA mutation. My mother has elected to have yearly mammograms and no surgeries or further monitoring (her ovaries had been removed years ago). And that is the right decision for *her*. We are hyperaware in our family of the different options for a woman with a known BRCA mutation, because there are 5 little girls now in our family who may or may not be carriers (my brother has not been tested, but has a 50% chance of carrying the mutation, and has 3 little girls of his own...my BRCA1 sister has 2 daughters), and we want to make sure they know they have options for what to do, and that they can choose whatever feels right for *them*. |
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Post by christine58 on Jul 3, 2016 11:30:31 GMT
It's better for you to know your results before getting your kids tested. Sometimes even unnecessary. I'd also wait till you get the results back. |
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Post by mikklynn on Jul 3, 2016 12:46:40 GMT
Generally for the heart genetics I'm familiar with you need a doctors referral before getting the testing done. Then the doctors order the kits, and it's sent to other labs to have the testing done. It's a long, time consuming process. Longer in Canada than the USA but still 6 weeks or more at the shortest and six months common. It's better for you to know your results before getting your kids tested. Sometimes even unnecessary. Even though I'm Canadian I hear genetic testing discussed from around the world in the heart group I'm in. Your son will be just fine getting Taiwan to do the testing. You will receive a letter from the testing company when you receive your results that you would send to your son, then he would present it to have a official reason for testing. Be sure you have insurance for life, in place before testing. As well as the kids. Once those test results come back positive it's impossible to get coverage .... For long qt anyway. Are you in the US? Under the Affordable Care Act (ACA) there is no longer any discrimination due to a preexisting condition. You cannot be denied insurance. |
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Deleted
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Jun 13, 2024 14:55:47 GMT
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Post by Deleted on Jul 3, 2016 13:26:56 GMT
There is no rush to test your son. This is not an emergency. There's more to this than meets the eye which is why your own family doctor or internist referred you oncology, hopefully for genetic counseling to go along with the blood test. Remember that you need your results to have your son tested and, if you are positive, it is still his decision to pursue testing. It may sound shocking, but not everyone pursues genetic testing. Also, there is more than 1 CHK mutation and there are implications based on how many mutations a person carries. I also know that when there is a positive result in the family, they like to know which specific mutation in the gene the identified person has. Paying out of pocket for a genetic test can range in the thousands, BTW. It really varies. I am curious. Does this uncle have cancer or is it a family history of cancer that led to the test? You can prepare in advance for your visit by preparing as extensive of a family tree as you can, including any cancer history and cause of death. It will be very helpful for the counselor. Thanks Melissa. I know it's not an emergency, and I figured out while answering other posts, that my rush was due more to family dynamics and mom worries about DS being so far away. It doesn't surprise me at all that many people don't pursue genetic testing. I turned it down in 2005 after , but I was in a really bad place emotionally, and didn't think about this kind of scenario. My uncle does not have cancer. His youngest daughter (30 y.o.) was diagnosed in Late Feb. with invasive ductal carcinoma. Her mom had just gone through breast cancer treatment in 2014/15. There is a family history of other cancers, though. His maternal grandmother had colon cancer. His mother (my grandmother) had multiple myeloma. So given all that, I feel like I need to have the testing done so that my kids will have as much info. as possible if they choose to use it. |
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Deleted
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Jun 13, 2024 14:55:47 GMT
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Post by Deleted on Jul 3, 2016 13:28:19 GMT
I have had genetic testing done (BRCA) through my oncologist, and I have arranged for my mother to have it done withOUT her primary care doctor's involvement. I needed confirmation that I got my mutation from her, because we had a genetic probe built to test my embryos for my BRCA mutation so we could try not to pass the mutation on. My mom's PCP was freaked out about doing the testing and was going to send her to a genetic counselor to have screening done and THEN get a referral for a blood draw. Lots of running around. I ended up just paying about $250 myself out of pocket and getting her tested through Color Genomics. They sent the cheek swab through the mail, and it took I think 3-4 weeks to get the results back. I just looked on the Color Genomics website, and the Chek2 mutation IS one that they test for. I would strongly recommend this company. They were easy to work with, and pretty thorough. You fill out an online form with your medical history and your family's medical history. When your results come in, they include a phone consult with a geneticist if you are interested in that (I wasn't--I have been very well educated on the implications of having a BRCA1 mutation, and we already knew with 99.9% likelihood that my mom had this defect--I just had to prove it to my fertility genetics people). getcolor.com/providers/genes-covered#gene-tableThanks, alyca This is good info to have. |
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Deleted
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Jun 13, 2024 14:55:47 GMT
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Post by Deleted on Jul 3, 2016 13:52:19 GMT
Generally for the heart genetics I'm familiar with you need a doctors referral before getting the testing done. Then the doctors order the kits, and it's sent to other labs to have the testing done. It's a long, time consuming process. Longer in Canada than the USA but still 6 weeks or more at the shortest and six months common. It's better for you to know your results before getting your kids tested. Sometimes even unnecessary. Even though I'm Canadian I hear genetic testing discussed from around the world in the heart group I'm in. Your son will be just fine getting Taiwan to do the testing. You will receive a letter from the testing company when you receive your results that you would send to your son, then he would present it to have a official reason for testing. Be sure you have insurance for life, in place before testing. As well as the kids. Once those test results come back positive it's impossible to get coverage .... For long qt anyway. Are you in the US? Under the Affordable Care Act (ACA) there is no longer any discrimination due to a preexisting condition. You cannot be denied insurance. I think she meant LIFE insurance which is not covered under the ACA. |
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Post by iamkristinl16 on Jul 3, 2016 14:07:56 GMT
It sounds like you have gotten some good info. I hope things turn out for the best for you!
I have a general question about genetic mutations. My mom has lung cancer that is caused by the ALK genetic mutation. I have tried to look into this and am not sure if it is a mutation that occurs throughout someone's life or if it could be passed down from generation to generation. Does anyone know about this? Thanks!
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melissa
Pearl Clutcher
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Post by melissa on Jul 3, 2016 19:00:38 GMT
Yes, LIFE insurance is something you want on board in advance. I am grateful that we already had life insurance for me. Unfortunately, I had a disability insurance application siting on my counter that I had not sent in... and then it was too late. I am no longer eligible for a reasonably priced policy. iamkristinl16, what you are talking about is a mutation IN the cancer, not in her genome. It is not found in all the cells of her body, just in the cancer. If it were in her genome, ie something she was born with or could pass on, her doctors would have told her to have family members tested. In this case, something went haywire with a lung cell that resulted in a mutation IN that cell. That cell then divided, creating more cells with that mutation, and so on, resulting in a lung tumor. It is important information because it directs treatment. Nothing more. It cannot be passed on to another individual. |
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Post by iamkristinl16 on Jul 3, 2016 19:41:14 GMT
Yes, LIFE insurance is something you want on board in advance. I am grateful that we already had life insurance for me. Unfortunately, I had a disability insurance application siting on my counter that I had not sent in... and then it was too late. I am no longer eligible for a reasonably priced policy. iamkristinl16, what you are talking about is a mutation IN the cancer, not in her genome. It is not found in all the cells of her body, just in the cancer. If it were in her genome, ie something she was born with or could pass on, her doctors would have told her to have family members tested. In this case, something went haywire with a lung cell that resulted in a mutation IN that cell. That cell then divided, creating more cells with that mutation, and so on, resulting in a lung tumor. It is important information because it directs treatment. Nothing more. It cannot be passed on to another individual. Thanks! |
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Post by mikklynn on Jul 4, 2016 0:00:32 GMT
Are you in the US? Under the Affordable Care Act (ACA) there is no longer any discrimination due to a preexisting condition. You cannot be denied insurance. I think she meant LIFE insurance which is not covered under the ACA. Ah, you are correct! I read it to mean medical insurance one could continue for as long as they live. With DH's many medical issues, I used to feel trapped at my job for fear of losing our medical insurance. I know that skews how I think! |
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Post by melissak on Jul 4, 2016 0:10:59 GMT
Some genetic testing can be VERY expensive and can take a long time. My 14 month old was tested for genetic disorders like her sisters and all total her testing took 3 months and cost just over $40,000! My older daughter had 1 test that took 2 months and cost $10,000! Some tests are only run by 1 or 2 labs in the world. Really you should have your son talk to his PCM and get a referral if needed.
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theshyone
Pearl Clutcher
Posts: 3,411
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Post by theshyone on Jul 4, 2016 0:27:22 GMT
I think she meant LIFE insurance which is not covered under the ACA. Ah, you are correct! I read it to mean medical insurance one could continue for as long as they live. With DH's many medical issues, I used to feel trapped at my job for fear of losing our medical insurance. I know that skews how I think! Yes I meant Life insurance. i had policies in place which is good. My daughter was covered with a small rider through mine, but she can convert it to a larger amount upon reaching majority age. |
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dald222
Pearl Clutcher
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Post by dald222 on Jul 11, 2016 7:58:40 GMT
well I had genetic testing last week..she says the earliest to get it back is 30 days. it was the same with my daughter.
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He's the kind of person who might try to arrange and pay for something, but his daughter is currently sick, and I just didn't want him to try to start arranging all that. Family dynamics at play here. I know it's not a huge need for a rush. I think I'm probably just going to tell him we're waiting on results and then he'll (hopefully) be satisfied. There, now I know what I'm going to do! 
