I AM LOOKING FOR SOME INPUT
RE
Comments
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Our daughters....
don't have an easy future to face, do they? The new testing and technology presents them with choices we would never have dreamed of having to make. We went ignorantly into our futures simply accepting whatever came because we had no other option. I am not sure which road is more challenging.
The only suggestion I can make is that your daughter AND her husband or significant other or whatever get lots of counseling as well as all the good medical advice they can find before she takes any irreversible step. I know the decision she makes should ultimately be for her and her alone, but the results will greatly effect both their lives. The better prepared they both are, the happier they will both be with whatever she decides, in my opinion.
God bless you all, my friend.0 -
This topic should NOT offend
This topic should NOT offend anyone. It is unfortunately a reality. I don't feel I'm knowledgable enough to advise you, but my heart goes out to you and your daughter. My family also has quite a history. One of my sister's doctors advised her to do a double mastectomy as a preventative measure. After a long time of going to specialists (with her husband) she finally decided against it. We all watched my Mom deal with a double M after her own battle with cancer, and as many of you know, it certainly isn't easy, to be taken lightly.
My other sister after going through chemo and radiation (stage 3) had to change oncologists a few years later. This one also recommended a bi-lateral mastectomy. She was shocked. After all she had been through, why now? He feels it may return, and this would reduce the odds. She is thinking about it(angrily), but seems to be leaning against doing it.
It seems that these days there are so many ways to keep watch, to catch it in the earliest phase. But then again, does anyone even want to deal with it even in the earliest of stages? It's amazing we even have these choices, and some of them so difficult.
God bless you and your family.0 -
Dear RE, of course you did
Dear RE, of course you did not offend with this question. It is a valid concern; you're a mom trying to help her daughter make the best decision.
I think--and I'm only a daughter, not a mom myself--, that I would support her in getting all the facts she needs and making sure she sees the reality of a future with cosmetically re-done breasts. Help her in getting that info and in meeting women who've had bilaterals. Talk to your own onc. and surgeon about it. Then, give her your opinion and thoughts, and stand back and let her decide--and support her every minute, as I know you already do.
Your daughter is blessed to have you, RE, as you were blessed to have your amazing mother. My best to you both.0 -
All grown up
RE,
You say that sex is a big deal in the life of a 29 year old. I say that sex should be a big deal in the life of ANY woman no matter what her age. BUT, life always trumps sex.
From what you have said it sounds to me like your daughter has really thought about all of this and is comfortable with her plan (as comfortable as anyone can be who has both breasts removed). You have to think about how she would feel if she waited and found out one day in the future that she had breast cancer. I don't know how long they've been doing this gene testing, but information is power and since she has the means to find out more information on her risks for bc you shouldn't feel too bad for her. She is YOUR daughter. She has seen you go through many things (you also have lymphodema from what I remember) and yet you still have a positive outlook and are a fighter (for your own life). She is just a mirror of the values you have taught her - you should be proud that she is at least considering doing all she can before she has problems.
I'm 41 and was scheduled for a mastectomy in August. The more I learned from my genetic counselor (and read on this forum) the more comfortable I was with having both breasts removed at the same time. I had a bilateral mastectomy the end of August and have not regreted it one day. They didn't find cancer in the other breast, but there were abnormal calcifications that most likely would have developed into something later. I felt that I'd rather have a bilateral (with radiation and medication) now than remove one this year and have to repeat everything in 5-10 years for the other one.
Take off your "Mom" hat for a second and look at your daughter's decision from your "survivor" role. If she is comfortable with her decision you know there are a ton of people (at home and here) that will support her. The only support I got from my own mother was a card that said "I'd go through this for you if I could." I know she didn't really mean that because I haven't seen or heard from her since my diagnosis in June (plus she's not a big one on dealing with pain). You HAVE gone through it and your daughter is very lucky to have learned so much from your experiences.
I hope what I've said here helps you.
Wolfi0 -
Your daughter
Boy, this is a tough one, my daughter is 20 and stands beside me through all of my treatments. I don't know how I would react if she posted the idea that your daughter has. BC runs in my family also, not as strong as you have noted but it's there. I totally agree with her having the brca test done, information is power. And I guess at this moment I would really pray that the test comes back negative. Ultimately in the end it's your daughters decision, however; you being there with supportive ideas is wonderful, and your conflicting feelings are ok too. As of now I pray your daughters test comes back negative so she can resume her life with regular mammograms and not such an extensive surgery.
Best wishes,
Kari0 -
First, this is not at all
First, this is not at all offensive.
Next, have you had the gene test done? Could you have it done? And then if you don't have the gene would that mean she couldn't have it or could she have it if you don't? Does she want to have the bilateral masectomies only if she has the gene? I am asking this because I had a neighbor who has 4 sisters who all had breast cancer as did their mom, but none of the sister's had the gene. I am not in a position to advise you but if you had the gene test done and it was negative that might help set her mind at ease or if you do the gene then she would be able to do the test to see if she actually has it. It is such a hard decision, but you are a great mom and will be there supporting her with whatever decision she makes. She will also be seeing a genetics doctor to do the test and they can help counsel her. Hard as it would be to lose her breasts, the piece of mind she might receive from this might indeed outweigh that loss. There is so much not known about cancer and some of cancers we share in families may come from genetic links not even known right now. And some of them might be from environmental, health habits, eating habits and other exposures we share with them. I honestly don't know what I would do to advise my daughter so I can't help you that way. But I can be hear to listen and I can send my prayers that she will use her counsel in making this decision. This is the one aspect of cancer that bothers me the most. That I may pass along some trigger to my child or her children. I can deal with this when it is me but my heart breaks when it is someone I love, like my family, my friends and my dear cyberbuds. I must have a little guy in me cause I want to fix it when it is someone else.
All you can do Re, is love her and support her in her decision. Because just like all of us, ultimately it will be her decision.
Stef0 -
Your daughter
RE, I think your daughter is being very proactive in getting the gene testing done. Given the cancer history in your family, I think it is absolutely the right choice. Even if some people in the family have a mutated BRCA 1 or 2 gene, it doesn't mean everyone in the family will. It is just luck of the draw on that one. I would suggest that the two of you start from there. Of course, we know that testing negative does not necessarily mean she is in the clear for life (though that would be nice, wouldn't it), but it would definitely be good news. I think thoughts of a bilateral mastectomy may be a bit premature. You don't have the information yet to make that choice. I think she should get the testing and make sure to talk to a certified genetic counselor about the results, no matter what they are. The counselor will not only talk about the BRCA genes, but also hereditary issues for someone who tests negative but still has a strong family history. If she tests positive, there is no hurry to have the surgery. She can get several opinions and take her time in deciding. Meanwhile, she can be closely monitored with mammograms and MRIs, if necessary. Also remind her that there are people who have had cancer who choose to have lumpectomies and are doing fine. There is more than one option here.
Another thing to think about, RE: although not pleasant to contemplate, having a bilateral mastectomy does not guarantee that your daughter will not get breast cancer. Just ask all the women who have had chest wall recurrences. Finally, if she does test positive for BRCA, I think the ovaries might be a bigger issue. As you know, ovarian cancer is much harder to detect and is often caught at a late stage. Having her ovaries closely monitored or removed after she is done having children would be highly recommended in that case. She could also look into taking Tamoxifen as a preventative. There are many choices and that's a good thing. I wish you and your daughter luck in navigating this tough issue. Many people stick their heads in the sand, and I commend your daughter for taking charge of her health. She is definitely her mother's daughter.
Mimi0 -
Mimimimivac said:Your daughter
RE, I think your daughter is being very proactive in getting the gene testing done. Given the cancer history in your family, I think it is absolutely the right choice. Even if some people in the family have a mutated BRCA 1 or 2 gene, it doesn't mean everyone in the family will. It is just luck of the draw on that one. I would suggest that the two of you start from there. Of course, we know that testing negative does not necessarily mean she is in the clear for life (though that would be nice, wouldn't it), but it would definitely be good news. I think thoughts of a bilateral mastectomy may be a bit premature. You don't have the information yet to make that choice. I think she should get the testing and make sure to talk to a certified genetic counselor about the results, no matter what they are. The counselor will not only talk about the BRCA genes, but also hereditary issues for someone who tests negative but still has a strong family history. If she tests positive, there is no hurry to have the surgery. She can get several opinions and take her time in deciding. Meanwhile, she can be closely monitored with mammograms and MRIs, if necessary. Also remind her that there are people who have had cancer who choose to have lumpectomies and are doing fine. There is more than one option here.
Another thing to think about, RE: although not pleasant to contemplate, having a bilateral mastectomy does not guarantee that your daughter will not get breast cancer. Just ask all the women who have had chest wall recurrences. Finally, if she does test positive for BRCA, I think the ovaries might be a bigger issue. As you know, ovarian cancer is much harder to detect and is often caught at a late stage. Having her ovaries closely monitored or removed after she is done having children would be highly recommended in that case. She could also look into taking Tamoxifen as a preventative. There are many choices and that's a good thing. I wish you and your daughter luck in navigating this tough issue. Many people stick their heads in the sand, and I commend your daughter for taking charge of her health. She is definitely her mother's daughter.
Mimi
As always, you have
Mimi
As always, you have consise and great advice.
These are great steps for Re and her daughter to consider. Especially about the ovarian cancer issue.
You are such an asset to this board.
Stef0 -
Proactivefauxma said:Mimi
As always, you have
Mimi
As always, you have consise and great advice.
These are great steps for Re and her daughter to consider. Especially about the ovarian cancer issue.
You are such an asset to this board.
Stef
Healthy yet still scared...that's what we and our daughters face. My mother also had BC. Before I was diagnosed I had several "abnormal" biopsies. I wanted the testing done but my insurance at the time wouldn't cover. It would have covered for my mother since she already had the diagnosis. Long story, but she refused. A couple of years later, after talking to the genetic counselor I had it done and it was negative. I was on tamoxifen for 3 years before I was diagnosed. I was not going to let the fear of "what if" paralyze me from getting information. If I had tested positive I don't know that I would have immediately scheduled surgery, but my family history is not as extensive as yours. What we all had to do after we were diagnosed was make the decision that is best for us. I see your daughter is just trying first to get as much info as possible for her to make her best decision. There is another issue....guilt. When I told my Mom of my diagnosis her reply was "I'm sorry I gave this to you." It was only then that I told her I had the testing 2 years prior and it was all negative. My personal theory is that in another 5-10 years there will not only be BRACA 1 and 2 testing but perhaps 3,4,5. My daughter is 21. Of course, I worry for her. I have let her know that I'll support anything she does or doesn't do. I'm touched that the two of you had such an open discussion.
dawn0 -
As a daughter who hasfauxma said:Mimi
As always, you have
Mimi
As always, you have consise and great advice.
These are great steps for Re and her daughter to consider. Especially about the ovarian cancer issue.
You are such an asset to this board.
Stef
As a daughter who has watched both her grandmother and mother battle cancer, I think your daughter has a right to know if she has the gene. Mimi gave great advice, there are other options besides a bi-lateral mast. And you'll be there to give her your opinion ... she will listen and value it ... but ultimately it is her decision. And watching you all battle it ... it does give us a very realistic view of what we may face. And she needs to know and make that decision for herself. And I agree, talking with a genetic counselor would be a wise move too.0 -
I am glad your daughter is looking into her future and ways to prevent the beast from appearing. I also am going to get the gene testing done. My Mom had cancer but not BC. I worry about my daughter also.
One thing that comes to mind is that this could be a choice she may want to make now...but a few years down the road hopefully, they will have so many better options and prayed for cures? It is so hard to say, but I respect her for watever her decision may be as I am sure you do also. You are a wonderful Mom, I bet she is so proud of you as you are of her.
Loveand Hugs, Jackie0 -
as survivor with mastectomyDawne.Hope said:As a daughter who has
As a daughter who has watched both her grandmother and mother battle cancer, I think your daughter has a right to know if she has the gene. Mimi gave great advice, there are other options besides a bi-lateral mast. And you'll be there to give her your opinion ... she will listen and value it ... but ultimately it is her decision. And watching you all battle it ... it does give us a very realistic view of what we may face. And she needs to know and make that decision for herself. And I agree, talking with a genetic counselor would be a wise move too.
Two major points
Definitely get tested and be aware of results.
If it is positive maybe put on hold for several years to get married, pregnant and have a baby , be very vigilant self-examination, annual MRI or ultrasound, blood tests.
She needs to make a very difficult decision. From your own experience, you probably know that it is always complications one way or another. There is no free ticket with both mastectomy & reconstruction especially if she is thinking about DIEP/Tram flap.
Hugs0 -
RE, there is nothing the least bit offensive about discussing this, so please don't apologize.
I'm 40, and have two paternal aunts who have both had breast cancer. We are all BRCA negative, but it's very likely that there's a gene swimming around on that side of the family that was passed down to me that science just hasn't found yet.
The only input I have for you is that, in retrospect, I wish I had taken my family history more seriously, and earlier, than I did. So I can understand, and I admire, your daughter for being so proactive.
Of course, she needs to take the time to talk with her loved ones and numerous medical professionals before making this decision, but good for her for being brave enough to take responsibility for her long-term health.
Traci0 -
Tough decision.......
I have no answer but do know someone in a similar situation....She tested postive......her mother and sister had BC...This was 25 years ago...She was 33 at the time and chose to have prophylactic mastectomies.....with reconstruction.....she is the wife of the doctor I worked with for years and close friend..........she has REMAINED CANCER free and has NEVER EVER regretted the decision she made 25 years ago......IT is a tough decision but your daughter sounds like a very intelligent young woman and with guidance will make the right decision, I feel, for herself...
God Bless you both!0 -
wow RE, that is a tough choice
Your daughter is concerned, rightly so, and it has to be tough for all of you. I know my sister, does not want to get the test, says she doesn't want to know. I was concerned for her when she said that, but we all have to make our own choices. We have me, my mom, and my mom's sister in our family diagnosed with the beast, so she does have some concerns too. She has chosen to be pro-active with the mammos & MRI's.
You do not have to apologize for any topic brought up here. That is why this place is here, for us, and for any types of concerns, comments, questions, etc. that we may have.
I hope your daughter does well, and I am sure, no matter what she does, you will be there for her.
Also, sex is sex, and we all adjust no matter the circumstances. Hopefully, she will not have to find out what it might be like without.
On a lighter note, me and my Frankenboobie are sexy as hell!
=^..^=0 -
LOL!cats_toy said:wow RE, that is a tough choice
Your daughter is concerned, rightly so, and it has to be tough for all of you. I know my sister, does not want to get the test, says she doesn't want to know. I was concerned for her when she said that, but we all have to make our own choices. We have me, my mom, and my mom's sister in our family diagnosed with the beast, so she does have some concerns too. She has chosen to be pro-active with the mammos & MRI's.
You do not have to apologize for any topic brought up here. That is why this place is here, for us, and for any types of concerns, comments, questions, etc. that we may have.
I hope your daughter does well, and I am sure, no matter what she does, you will be there for her.
Also, sex is sex, and we all adjust no matter the circumstances. Hopefully, she will not have to find out what it might be like without.
On a lighter note, me and my Frankenboobie are sexy as hell!
=^..^=
Still laughing ... thank you cats_toy! And yes, I'll bet that you and your frankenboobie are as sexy as hell!
))))
Sexiness really is an attitude! And girl, you got it!
Still LOL!
Love,
dh0 -
My oh so dear Re
I truely
My oh so dear Re
I truely wish that I could return all the words of wisdom that you have passed on to me. There is no way I could ever understand the fears that you face for your daughter. I am sure though that you understand the fears that she faces. Heck you yourself were once in her very place.
You and I have talked about a few times of my getting a profolatic mastdectomy. For me it does not lower the chances of reocurance enough to go through the surgery at this time. So I am not doing it. However that is my informed decision. I guess the point I am trying to make, is the more information she has the better she would be better able to decide what would be best for her and her young family.
I know that one of your biggest fears is that your daughter would follow in these perticular foot steps that you, your sister, and your mother have walked. You were relatively young (not that you still are not) when you face the decision of a masdectomy, not to be personal but wern't you and your guy able to move past that?
You and your family are in my prayers Re, and just as you have always been here for me I am here for you.
love
tj0 -
Dear RE ♥mimivac said:Your daughter
RE, I think your daughter is being very proactive in getting the gene testing done. Given the cancer history in your family, I think it is absolutely the right choice. Even if some people in the family have a mutated BRCA 1 or 2 gene, it doesn't mean everyone in the family will. It is just luck of the draw on that one. I would suggest that the two of you start from there. Of course, we know that testing negative does not necessarily mean she is in the clear for life (though that would be nice, wouldn't it), but it would definitely be good news. I think thoughts of a bilateral mastectomy may be a bit premature. You don't have the information yet to make that choice. I think she should get the testing and make sure to talk to a certified genetic counselor about the results, no matter what they are. The counselor will not only talk about the BRCA genes, but also hereditary issues for someone who tests negative but still has a strong family history. If she tests positive, there is no hurry to have the surgery. She can get several opinions and take her time in deciding. Meanwhile, she can be closely monitored with mammograms and MRIs, if necessary. Also remind her that there are people who have had cancer who choose to have lumpectomies and are doing fine. There is more than one option here.
Another thing to think about, RE: although not pleasant to contemplate, having a bilateral mastectomy does not guarantee that your daughter will not get breast cancer. Just ask all the women who have had chest wall recurrences. Finally, if she does test positive for BRCA, I think the ovaries might be a bigger issue. As you know, ovarian cancer is much harder to detect and is often caught at a late stage. Having her ovaries closely monitored or removed after she is done having children would be highly recommended in that case. She could also look into taking Tamoxifen as a preventative. There are many choices and that's a good thing. I wish you and your daughter luck in navigating this tough issue. Many people stick their heads in the sand, and I commend your daughter for taking charge of her health. She is definitely her mother's daughter.
Mimi
I have to agree that what Mimi wrote is perfect. I really can't add much to it except that she is your daughter, and with that in mind, she will make the right decision for herself. What is right for her is just that....Right for her!
Love, Jeanne ♥0 -
RE, How in the world could your post offend anyone?
You are so blessed to have a daughter who shares her thoughts and concerns with you.I don't remember...have you had the BRCA test? Those results would be good information for your daughter. The best ammunition a warrior can have is information. She is your baby and she is 29. That means that you needn't encourage her and you needn't discourage her. Mostly what she needs from you is your support and love, no matter what her decision is. She will do what is right for her. xoxoxo Lynn0
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