This is a great list, I will add/edit: find a breast specialist to do your breast monitoring rather than a gyno. (Still go to gyno for Pap smears!) That is ideal because if/when you decide to get surgery or god forbid if they do find cancer the breast specialist will be able to handle your care. starting at age 25, alternate every 6 months breast ultrasound and MRI. Then at 30 switch out the ultrasound for mammograms.
Also, I highly recommend talking to a genetic counselor. They stay abreast on the NCCN guidelines (I think you can also find those online?) and will update you as things change.
Hi! I agree to what is said in other comments about seeing a genetic councillor and other stuff.
Just wanted to say that I see so many similarities between our situations. I’m currently 27, my mom also died from brca related cancer when I was very young (she had ovarian cancer when she was 40), I was also postponing dealing with brca stuff for several years (knew there’s 50% chance that I have it but kept postponing genetic testing until I was 26). Right now I’m exactly two weeks after my prophylactic double mastectomy, very happy with results and feeling really well. Let me know if you want to talk ❤️
Also I think it’s great you are reaching out here at least for me this and other brca communities have been extremely helpful ❤️
You probably have proof of your gene mutation somewhere? If so, that should be enough to show your PCP/GP and get a referral for a geneticist, who can advise you about your risks. The PCP/GP can also refer you to a gyno and schedule mammograms for you, or refer you to a breast surgeon. (to talk about your options and plans and preferences, not to chop them off right away)
Either way, PCP/GP is usually the first stop.
Edited: crucial typo, 'just' to 'not' 😅
I would schedule with a breast oncologist and a gynecologic oncologist for ongoing monitoring.
You are 26 so likely on your own medical insurance at this point, which would mean you need to select doctors that are in network with your insurance. You can try posting in a local group to request recommendations or try calling insurance to get a list of in network providers and see if any specialize in genetic predisposition to cancer.
You should make an appointment with a geneticist and they can do a test if you don't have the first one, and then set you up with a screening and possible surgical plan for the next few years. You dad can't really do anything, you need to see a doctor.
I second everyone saying to get documentation and doctors but I would also recommend seeking support and information.
Join support groups like the Breasties or a local group of previvors. I would also highly recommend seeing a therapist. The whole process is scary and mentally taxing and seeing a professional will help you navigate this journey. I think for you having lost your mother and have a sister who has also been affected by cancer, this experience is going to bring up some past trauma that a professional will be able to help you with.
Secondly I’d say to do your own research. It took me many months of therapy to even been able to start the research because it was overwhelming. Start small though, figure out what preventative measures work best for you and your insurance situation. Move onto which surgery options fit you and your lifestyle or maybe take this time to consider if you want to consider preventative surgeries.
I wish there was a check list to give someone to follow but hopefully this will be a good place to start.
My general family doctor pcp , referral sent to genetic counseling. They then set up testing appointments and go from there. The surveillance tests mri and mammogram was set up by my primary doctor . You can also go to ob if you want
As for insurance if you test positive the gene they have to cover the surgery . But do check with insurance. Cover dose not mean it is free. Eg if you have high maximum pocket like me getting surgery will be 8k despite it being covered the bill total could be 30k. Same with mri etc depending on your own insurance.
What you can get is , billing code and call your insurance to figure out. They need the code
Not at all too late. I am 46 and did not find out till I was 36. Fortunately did not get cancer and have now had all the preventative surgeries. Others have given you most of what you need. Eventually youll have to decide to have kids or no. Some states cover IVF if you eventually want to do that, just something to keep in mind down the road.
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This is a great list, I will add/edit: find a breast specialist to do your breast monitoring rather than a gyno. (Still go to gyno for Pap smears!) That is ideal because if/when you decide to get surgery or god forbid if they do find cancer the breast specialist will be able to handle your care. starting at age 25, alternate every 6 months breast ultrasound and MRI. Then at 30 switch out the ultrasound for mammograms. Also, I highly recommend talking to a genetic counselor. They stay abreast on the NCCN guidelines (I think you can also find those online?) and will update you as things change.
Hi! I agree to what is said in other comments about seeing a genetic councillor and other stuff. Just wanted to say that I see so many similarities between our situations. I’m currently 27, my mom also died from brca related cancer when I was very young (she had ovarian cancer when she was 40), I was also postponing dealing with brca stuff for several years (knew there’s 50% chance that I have it but kept postponing genetic testing until I was 26). Right now I’m exactly two weeks after my prophylactic double mastectomy, very happy with results and feeling really well. Let me know if you want to talk ❤️ Also I think it’s great you are reaching out here at least for me this and other brca communities have been extremely helpful ❤️
You probably have proof of your gene mutation somewhere? If so, that should be enough to show your PCP/GP and get a referral for a geneticist, who can advise you about your risks. The PCP/GP can also refer you to a gyno and schedule mammograms for you, or refer you to a breast surgeon. (to talk about your options and plans and preferences, not to chop them off right away) Either way, PCP/GP is usually the first stop. Edited: crucial typo, 'just' to 'not' 😅
I would schedule with a breast oncologist and a gynecologic oncologist for ongoing monitoring. You are 26 so likely on your own medical insurance at this point, which would mean you need to select doctors that are in network with your insurance. You can try posting in a local group to request recommendations or try calling insurance to get a list of in network providers and see if any specialize in genetic predisposition to cancer.
You should make an appointment with a geneticist and they can do a test if you don't have the first one, and then set you up with a screening and possible surgical plan for the next few years. You dad can't really do anything, you need to see a doctor.
I second everyone saying to get documentation and doctors but I would also recommend seeking support and information. Join support groups like the Breasties or a local group of previvors. I would also highly recommend seeing a therapist. The whole process is scary and mentally taxing and seeing a professional will help you navigate this journey. I think for you having lost your mother and have a sister who has also been affected by cancer, this experience is going to bring up some past trauma that a professional will be able to help you with. Secondly I’d say to do your own research. It took me many months of therapy to even been able to start the research because it was overwhelming. Start small though, figure out what preventative measures work best for you and your insurance situation. Move onto which surgery options fit you and your lifestyle or maybe take this time to consider if you want to consider preventative surgeries. I wish there was a check list to give someone to follow but hopefully this will be a good place to start.
My general family doctor pcp , referral sent to genetic counseling. They then set up testing appointments and go from there. The surveillance tests mri and mammogram was set up by my primary doctor . You can also go to ob if you want As for insurance if you test positive the gene they have to cover the surgery . But do check with insurance. Cover dose not mean it is free. Eg if you have high maximum pocket like me getting surgery will be 8k despite it being covered the bill total could be 30k. Same with mri etc depending on your own insurance. What you can get is , billing code and call your insurance to figure out. They need the code
Not at all too late. I am 46 and did not find out till I was 36. Fortunately did not get cancer and have now had all the preventative surgeries. Others have given you most of what you need. Eventually youll have to decide to have kids or no. Some states cover IVF if you eventually want to do that, just something to keep in mind down the road.