Met with Genetic Counselor
1. My kids will need to start having mammograms when they are 28 years old.
2. We are all at higher risk for skin cancer.
Nothing earth shattering. But here's the part I'm really nervous about...
My mom has a very rare uterine sarcoma. Apparently there is a genetic disorder (similar to BRAC1-2) that links sarcomas to bc. AND it would also link my younger daughter's congenital birth defects. So now my family (brother, cousins, aunts, etc.) are compiling emails to me regarding any and all health issues in our family. This also has to include any benign biopsies they have had (polyps, fibroid cysts, moles, etc.) which, I assure you, are plentiful.
The genetic disorder is called Li-Fraumeni Syndrome. If any of you read about this, you will see that it contains some pretty serious childhood cancers. I cannot tell you how much I hope we do not contain this mutation.
I will keep you all posted...As we have been saying in my house for years, "It's always something."
Comments
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Breast Cancer / Skin Cancer
Someone else posted this but I wanted to highlight here too - since we have breast cancer we are now at a higher risk than the normal population for acquiring skin cancer. We should all see a dermatologist every year regardless of our age at BC diagnosis.0 -
Good Infopitt said:Breast Cancer / Skin Cancer
Someone else posted this but I wanted to highlight here too - since we have breast cancer we are now at a higher risk than the normal population for acquiring skin cancer. We should all see a dermatologist every year regardless of our age at BC diagnosis.
My dad's side of the family has the moles, growths, as a matter of fact my paternal grandmother had a mastectomy in the late 40's or early 50's. My first surgeon said that statistically the paternal side doesnt affect me. Who knows. I'm wishing only the best for your daughters.0 -
Hipitt said:Breast Cancer / Skin Cancer
Someone else posted this but I wanted to highlight here too - since we have breast cancer we are now at a higher risk than the normal population for acquiring skin cancer. We should all see a dermatologist every year regardless of our age at BC diagnosis.
I see you are a fellow Floridian in the Lauderdale area. We now live in a suburb of Orlando, moved here from Coral Springs in 97. Where in Lauderdale are you located? You seem to have a great deal of confidence in your oncologist. I was referred to Moffitt in Tampa, so hubby and I have been doing the 1 1/2 hour drive for everything. I love S.Florida. My older son lives in Wellington, and younger son lived in Cooper City but moved to North Carolina about 2 years ago. Perhaps one day we can meet when I'm in the area, or perhaps if you and the family take a ride to see Mickey. This photo was taken about 4 years ago on a cruise. My hair is still short but one length. I need to find a more current one to post, that is when I figure out how to do it.
I love that you are close geographically. It amazes me that people from Europe and Central America are also on this website. 0 -
I just
had the genetic testing done and will find out about my results next week or so. I was also told that since i was diagnosed at such a young age and if i carry the genes brac 1 and brac 2 that they are genetic and i have a higher rate at getting ovarian cancer as well. I guess if you carry the genes period, you definately have to watch out for your children and family and yourself for any reoccurances of any kind.
laura0 -
Sorry to hear about that.
I'm hoping that your children don't have a problem with this later on.0 -
Concernedoutdoorgirl said:Sorry to hear about that.
I'm hoping that your children don't have a problem with this later on.
I think the genetic counseling and testing is great. But, have any of you heard that it might work against you and your kids later in life? It could be considered a pre-known condition or something? Someone on here posted awhile back about how some insurance companies would use it against you possibly, and therefore, they weren't going to have it done.
♥ Noel0 -
I need to know if I have Li
I need to know if I have Li Fraumeni Syndrome, because then my surgical decisions will change: radical mastectomy, complete hysterectomy, etc. I need to know if I have a higher risk for recurrence than we think right now. And yes, the implications for my children are horrific. As for your point about insurance: All of us on this site have cancer, a pre-existing condition. That's why we need to pay extremely close attention to DC right now. Regardless of your political affiliation, we are all at risk of being dropped from our insurance companies. Let's hope they get something passed because one of the major reforms to the insurance industry from DC is to eliminate this "pre-existing conditions" clause from everyone's policies. Fight the good fight, Pitt0 -
I hope that your test comespitt said:I need to know if I have Li
I need to know if I have Li Fraumeni Syndrome, because then my surgical decisions will change: radical mastectomy, complete hysterectomy, etc. I need to know if I have a higher risk for recurrence than we think right now. And yes, the implications for my children are horrific. As for your point about insurance: All of us on this site have cancer, a pre-existing condition. That's why we need to pay extremely close attention to DC right now. Regardless of your political affiliation, we are all at risk of being dropped from our insurance companies. Let's hope they get something passed because one of the major reforms to the insurance industry from DC is to eliminate this "pre-existing conditions" clause from everyone's policies. Fight the good fight, Pitt
I hope that your test comes back that you don't have anything for Li Fraumeni Syndrome. I know a lot get the genetic testing and I think that is great for them.
Sue
0 -
Oncogene test?
Hi Pitt,
Did you have this test? If so,what was your score?
-Jenny0 -
Oncotype Testjennytwist said:Oncogene test?
Hi Pitt,
Did you have this test? If so,what was your score?
-Jenny
Actually, I did not have the oncotype test because of my age. Since I am under 40, my oncologist felt that we needed to treat this cancer aggressively, regardless if my score is high or low. The chance of recurrence for a 60 year old woman vs a 38 year old woman are very different. I did the Brac 1-2 test and it came back negative but because of my mom's sarcoma and my daughter's birth defects, we need to do this Li Fraumeni test now to rule out a connection. My family (cousins and all) are on board so we are going to make plans to get that done in the next month.0 -
This crap with InsuranceNoel said:Concerned
I think the genetic counseling and testing is great. But, have any of you heard that it might work against you and your kids later in life? It could be considered a pre-known condition or something? Someone on here posted awhile back about how some insurance companies would use it against you possibly, and therefore, they weren't going to have it done.
♥ Noel
This crap with Insurance companies has to STOP!!!!!!!!!!!!!! I'm sorry, and it's not right to say this, but it makes me so furious I could spit nails. We are the ONLY country in the world where people's lives depend on other people's PROFITS! It's disgusting, and anytime someone defends ins companies and their profits, I'd like to rip out their layrnex. Sorry, I'm still in pain from my hernia and when I heard the latest stunt by an ins company telling a mother they wouldn't cover her for another pregnancy because she had a C-Section and would need another for a second child, but they would cover her for a sterilization!they had to renig when it became known nationally what they were doing, same with not wanting to cover what THEY thought was an overweight baby!They all ned to go to he double hockey sticks in a handbasket, I hope all these greedy CEO's get plagued with a terminal illness. Sorry, but I'm ANGRY! Obama better grow some and tell them NO MORE of their crap!0 -
Pitt,
I hope you don't test positive for Li-Fraumeni Syndrome. I am also under 40, but don't have a lot of young cancer or any sarcomas in the family that I know of, so the testing was not recommended for me. I did BRCA 1 and 2, which were negative. The Syndrome is rare so I am hoping it won't show up for you. But, I think it's good that you're getting this done. Regardless of insurance issues, you need to be aware of this for your children's sake. It doesn't necessarily mean something bad will happen, just that you need to be watchful.
As for insurance, I hate it, too. To be punished for a genetic mutation or a pre-existing condition (I think it's appalling that a C-section would be considered this) should be the very definition of "Un-American." This needs to stop and I hope we can get something through Congress. On that note, I know another young survivor who would not get tested for the BRCA mutations because she was in the military. She told me that testing positive would mean an immediate honorable discharge from the army. That was their policy. I haven't fact checked this, but if so, it's awful. It brings up all sorts of issues of a tiered society based on health or even potential health.
Anyway, please let us know the results.
Mimi0 -
Genetic testing is a twomimivac said:Pitt,
I hope you don't test positive for Li-Fraumeni Syndrome. I am also under 40, but don't have a lot of young cancer or any sarcomas in the family that I know of, so the testing was not recommended for me. I did BRCA 1 and 2, which were negative. The Syndrome is rare so I am hoping it won't show up for you. But, I think it's good that you're getting this done. Regardless of insurance issues, you need to be aware of this for your children's sake. It doesn't necessarily mean something bad will happen, just that you need to be watchful.
As for insurance, I hate it, too. To be punished for a genetic mutation or a pre-existing condition (I think it's appalling that a C-section would be considered this) should be the very definition of "Un-American." This needs to stop and I hope we can get something through Congress. On that note, I know another young survivor who would not get tested for the BRCA mutations because she was in the military. She told me that testing positive would mean an immediate honorable discharge from the army. That was their policy. I haven't fact checked this, but if so, it's awful. It brings up all sorts of issues of a tiered society based on health or even potential health.
Anyway, please let us know the results.
Mimi
Genetic testing is a two edged sword. It is good to know what to look for but then when you have something it impacts future insurance coverage. I am going through genetic testing and I am hoping it will be negative not because of health issues for me but if I have what they are looking for then my Denise has a 50/50 chance of this also. She doesn't have very good medical coverage and if it were to become known she has this, then she might not be able to get better coverage. So not sure she will test for this if we find out I have this syndrome. We have talked and think it might be better to have her get better coverage first and to be deligent in doing check ups until then. I am awaiting the last of my test results but it isn't looking good so far. But until I have a definite I am not going to worry. I haven't said much about this because it came out of left field and it has me more concerned than I care to admit. Should know in a couple of weeks. The Mayo Clinic is doing the genetic analysis and it takes 4 to 6 weeks to get results. Our favorite game, waiting.
Meanwhile the boxing, selling, prepping to move continues. At least we were able to retain our medical coverage. At least for the next 9 months. And that is a big worry off my shoulders.
Stef0 -
Steffauxma said:Genetic testing is a two
Genetic testing is a two edged sword. It is good to know what to look for but then when you have something it impacts future insurance coverage. I am going through genetic testing and I am hoping it will be negative not because of health issues for me but if I have what they are looking for then my Denise has a 50/50 chance of this also. She doesn't have very good medical coverage and if it were to become known she has this, then she might not be able to get better coverage. So not sure she will test for this if we find out I have this syndrome. We have talked and think it might be better to have her get better coverage first and to be deligent in doing check ups until then. I am awaiting the last of my test results but it isn't looking good so far. But until I have a definite I am not going to worry. I haven't said much about this because it came out of left field and it has me more concerned than I care to admit. Should know in a couple of weeks. The Mayo Clinic is doing the genetic analysis and it takes 4 to 6 weeks to get results. Our favorite game, waiting.
Meanwhile the boxing, selling, prepping to move continues. At least we were able to retain our medical coverage. At least for the next 9 months. And that is a big worry off my shoulders.
Stef
I just want to say that I will be praying that your test will come out with only the best results! I am glad that you finally said something on here so that we can support you. Be sure and let us know when you find out. Big hugs to you Stef!
♥ Noel0 -
Thank you, Noel,Noel said:Stef
I just want to say that I will be praying that your test will come out with only the best results! I am glad that you finally said something on here so that we can support you. Be sure and let us know when you find out. Big hugs to you Stef!
♥ Noel
I rarely
Thank you, Noel,
I rarely worry about stuff until it is time to worry or do something but this testing has me pretty bummed. The good news is that they also did some genetic testing for a genetic blood clotting problem and that looks alright. This is for Lynch Syndrome and Muir Torre Syndrome. The tests they did on my uterine tumor points towards this being the case but the blood tests they did will tell the tale. They have been sent to the Mayo clinic and it takes weeks to complete them. If I do have either one or both of these, it increases my chance of colon cancer to 60 to 80 percent. So my worry is that if I have this and passed it to my Denise, her chances are that also. And it also increases her chances of uterine and bladder cancers as well as an increase in sebeceous carcinomas. My physician's assistant that I have been seeing for the last 9 1/2 years suggested it based on my having had uterine cancer at 52 (this is slightly below the norm age wise), and having had bladder cancer and a sebeceous carcinoma. This creates a group of cancer linked to Lynch Syndrome. We orginally thought that my bladder cancer was related to my pelvic radiation and it still could be but she felt that I should have my tumor tested. I have only sketchy medical history on my dad's side and he died from a massive heart attack very young so if he had carried this it hadn't shown up anything at the time of his death. But his dad died from colon and stomach cancer and we don't know what his brothers or others died from. If I do have this, I will be meeting again with the genetics department and we will go over preventative tests and plans. If Denise should have it, she will have to be diligent in having uterine scopes etc done and will have to start colonoscopies in the next couple of years and do them every couple years. I hate that this might be the case but then there is a 50% chance that even if I have it, she won't so for now I will live by my mantra, Don't borrow trouble, worrying about tomorrow only serves to rob me of today. Thank you for the hugs and support. This is a great group and I know that we are all here for each other, no matter what we are facing.
Thank you,
Stef0 -
Just wanted you to know, Streffauxma said:Thank you, Noel,
I rarely
Thank you, Noel,
I rarely worry about stuff until it is time to worry or do something but this testing has me pretty bummed. The good news is that they also did some genetic testing for a genetic blood clotting problem and that looks alright. This is for Lynch Syndrome and Muir Torre Syndrome. The tests they did on my uterine tumor points towards this being the case but the blood tests they did will tell the tale. They have been sent to the Mayo clinic and it takes weeks to complete them. If I do have either one or both of these, it increases my chance of colon cancer to 60 to 80 percent. So my worry is that if I have this and passed it to my Denise, her chances are that also. And it also increases her chances of uterine and bladder cancers as well as an increase in sebeceous carcinomas. My physician's assistant that I have been seeing for the last 9 1/2 years suggested it based on my having had uterine cancer at 52 (this is slightly below the norm age wise), and having had bladder cancer and a sebeceous carcinoma. This creates a group of cancer linked to Lynch Syndrome. We orginally thought that my bladder cancer was related to my pelvic radiation and it still could be but she felt that I should have my tumor tested. I have only sketchy medical history on my dad's side and he died from a massive heart attack very young so if he had carried this it hadn't shown up anything at the time of his death. But his dad died from colon and stomach cancer and we don't know what his brothers or others died from. If I do have this, I will be meeting again with the genetics department and we will go over preventative tests and plans. If Denise should have it, she will have to be diligent in having uterine scopes etc done and will have to start colonoscopies in the next couple of years and do them every couple years. I hate that this might be the case but then there is a 50% chance that even if I have it, she won't so for now I will live by my mantra, Don't borrow trouble, worrying about tomorrow only serves to rob me of today. Thank you for the hugs and support. This is a great group and I know that we are all here for each other, no matter what we are facing.
Thank you,
Stef
That you are in my prayers as well. Keeping fingers & toes crossed for you. Also, Pitt, I am saying prayers for you as well. ♥Pammy0 -
Sorry StefAkiss4me said:Just wanted you to know, Stref
That you are in my prayers as well. Keeping fingers & toes crossed for you. Also, Pitt, I am saying prayers for you as well. ♥Pammy
So sorry to read this Stef. I always love reading what you write, but, I didn't like what you wrote this time. I will pray also that your tests come back good, and that nothing further is needed.
HUGS!0 -
PItt,pitt said:Oncotype Test
Actually, I did not have the oncotype test because of my age. Since I am under 40, my oncologist felt that we needed to treat this cancer aggressively, regardless if my score is high or low. The chance of recurrence for a 60 year old woman vs a 38 year old woman are very different. I did the Brac 1-2 test and it came back negative but because of my mom's sarcoma and my daughter's birth defects, we need to do this Li Fraumeni test now to rule out a connection. My family (cousins and all) are on board so we are going to make plans to get that done in the next month.
I hope that your tests
PItt,
I hope that your tests come out with a big no to this genetic link. It is nerve racking but by knowing you are be alert to anything that you need to know and your family can be tested also. Genetics is a mixed blessing as I said but I know that I would rather my family and I know what is possible and can be vigilant in watching for whatever might result. So my prayers are that all your results are good.
Stef0 -
I agree. My thoughts andfauxma said:Genetic testing is a two
Genetic testing is a two edged sword. It is good to know what to look for but then when you have something it impacts future insurance coverage. I am going through genetic testing and I am hoping it will be negative not because of health issues for me but if I have what they are looking for then my Denise has a 50/50 chance of this also. She doesn't have very good medical coverage and if it were to become known she has this, then she might not be able to get better coverage. So not sure she will test for this if we find out I have this syndrome. We have talked and think it might be better to have her get better coverage first and to be deligent in doing check ups until then. I am awaiting the last of my test results but it isn't looking good so far. But until I have a definite I am not going to worry. I haven't said much about this because it came out of left field and it has me more concerned than I care to admit. Should know in a couple of weeks. The Mayo Clinic is doing the genetic analysis and it takes 4 to 6 weeks to get results. Our favorite game, waiting.
Meanwhile the boxing, selling, prepping to move continues. At least we were able to retain our medical coverage. At least for the next 9 months. And that is a big worry off my shoulders.
Stef
I agree. My thoughts and prayers are with you as you face these issues head-on, eyes wide open. And you're right, we can't bury our heads in the sand, but we shouldn't lose positive energy over things we can't control either. Balance is everything! Keeping my fingers crossed for all of us...Pitt0
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