How to tell my boyfriend I might have BRCA1?

Thegirlinorange · October 2011

Hi,

Long story short, I'm in a serious long distance relationship, so how do I find the appropriate time/place to tell my boyfriend I might have BRCA1?

First of all I apologise for leaping in here with my problems like a complete newbie, but although I am far too inexperienced to be any real help to most people here, I kind of needed to talk to someone who knew a bit about this sort of thing; about my worries/problems.

My name is Katie, I am 20 years old. When I was 15 my mother died of breast cancer, she had it recurrently ever since I was about 5/6, with periods of remission. When I was about 16, my father got a letter through regarding a test my mother had taken, the BRCA1/2 genetic test. It turned up positive.

Being 16, I couldn't really deal with this and the implications for me - it was hard enough coping with my mother's death. In fact, I often feel like I still can't deal with it and tend to bury my head in the sand. But also, I know the sensible thing to do, I know what my mother would have me do. And despite trying to convince myself otherwise, people do get cancer at my age - a friend of a friend should have been starting her second year at university this year, but she has been diagnosed with ovarian cancer instead.

I feel the time has come to take the test. What with going to university and changing doctor's, it's been awkward trying to figure out the best time, but I've pretty much decided that when I get home next summer, I need to get onto it. Properly.

The trouble is, I've met someone this summer. And I can really see this being something that lasts. I'm in another country at the moment but we still care deeply about each other. But, before I get 'too far in' I feel that it is my duty to tell him I could have this gene, if he's thinking of a future together.

Originally, I had thought to tell him at Christmas, however I'm only home for two weeks and it will be a really crap way to ruin it for him. So I thought, maybe I should tell him when he comes to visit next week. But I don't want to ruin our short week together either!

But it's more than that, the more I think about it the more I know how upset he'll be by this and I don't want him to be worrying for months on end until next summer. I can put it to the back of my mind, I grew up being around the subject of cancer, but he has not. I don't know what to do, I don't want to be selfish, nor do I want to hurt him!

I realise this has been a long post, so I appreciate anyone who has read the whole of it. Thanks

dlb823 · October 2011

What a heavy emotional burden for you to carry alone. I'm really glad you've found BCO for some support.

I haven't dealt with the BRCA issue, but I don't think I would say anything really specific to your boyfriend at this point. If you are comfortable confiding in him about losing your Mother to bc, I think that's about all I would do for now. If he asks if bc is genetic or otherwise expresses a specific concern about your possible fears and future, I would probably tell him there's a possibility it is, and that you've decided to get tested. But I kind of think I would leave this on an as-need-to-know basis -- rather than hitting him with everything at once, which, as you pointed out, would be a lot for anyone who isn't as intimately familiar with bc as we are to really comprehend.

I'm so sorry about your Mother. I know there's at least one recent thread on here by others your age who have either recently lost their Moms or are facing that possibility. Perhaps that's another thread you might want to know about. I think it's in the Family & Friends (or something like that) Forum (click on Forum Index above and scroll down to find it).

(((Hugs))), and let us know how things go with your boyfriend. Deanna

Thegirlinorange · October 2011

Thank you, that's really helpful. My dad's pretty closed off about such things and my friends...well, understandably it's hard for them, so I don't talk about it much with them.

I did tell him about my mother (although not in detail) because it felt important to do so, she is/was a big part of my life and it was a big event.

I'll go and check out those threads/forums, thankyou! x

goldiebelle · October 2011

Hi dlb

I am not in your situation so I don't have a lot of advice for you. I do agree with thegirlinorange, let it be a need to know deal. If your boyfriend is the same age range as you are he may not be mature enough to give you the support you need. Not that that is a bad thing. Do the things you need to do to take care of yourself starting now. Talk to doctors and get some advice. We are here for you

pminxy · October 2011

You Have been handed a tough call there and I can't begin to know the stress and pain you are going through in your heart and head thegirlinorange, but you must remember even if you fall in BRCA1 you may not get cancer for it has been known to skip generations. I am in an unknown BRCA according to the genetics people I have cancer issues on both parents side of the family I am on my 5th-6th round with cancer in some form I now have palliative metastatic breast cancer stage lV and though my situation is related to past cancer and poor checks etc by the hospital sysem I am at peace with myself though my heart aches for my loved ones, sadily my youngest sister was diagnosed with the same cancer as me and my sister who is a year younger is awaiting tests to confrm or clear her of cancer issues there is no right or wrong way of telling someone you love that you are at risk re BRCA1, it is for you to decide whether your relationship is strong enough to stand inate truths ;is this man man enough to stand by you as many others do: have the test first and take it from there and if it is positive and you feel it is right to tell him explain that it does not have to mean you will get it it just means that you are more at risk then others that's all.I also think if he really loves you like you feel he does he will be upset for you not at you, my sister is in the similar position and from what I have heard her new man is standing by her breast cancer possibilty of just lumpectomy breast loss and all. The thing is Katie if I may call you that everyone is different and we all react in different ways to different things;but you also have the problem of him coming to visit and in conversation say at family dinner somebody lets something slip and then where will you be, I wish you luck dear one and I know in my heart of hearts one way or the other you will do what you feel is right and it wil work out in whatever way it must, I wish you great happiness and best wishes for the coming season and may love hold you both tight in its arms for a long time

pminxy

Tatina123 · October 2011

Dear Katie,

My heart just ached reading your post....you are dealing with so much right now. Stay proactive and keep your boyfriend informed on an as needed basis. I am proud you've decided to take the test -- it will empower you with the information you need. We are here for you....

Hugs,

T

NannaBaby · October 2011

Don't worry too much. I wouldn't think it's necessary to tell anyone until you are ready. Wait until you get the results until you decide who to tell and how you feel.

Take Care.

LISAMG · October 2011

PLEASE visit www.bebrightpink.org , the only organization devoted specifically for young women like U who are BRCA positive. You will find tons of support, knowledge, dating tips, advice and lifelong friendships!!

beacon800 · October 2011

It's the beauty and burden of the new technology we have, isn't it!

First, there is a 50% chance that you do not carry the gene. If I were you, I would relax as much as you can, take the test and see what it says before mentioning it to your bf. Truely, it's a lot of info for a young guy and I would wait til I had a definitive answer from the test results. The main number one thing is your own health. My mom also died of bc and I had a negative brca result. Most women who get cancer are negative. the great thing is that knowledge is power and either result will give you information to take the best care of yourself. Hope everything goes the best for you!

J-Bug · October 2011

I took the BRAC tests because I have several family members on both sides that have had breast cancer. My test came back negative. I felt no relief for my daughter by that result because of the other family members having it.

You have told your boyfriend what you know so far, which is that you went through so much with your mother having it. He is smart enough to connect the dots - that it could happen to you. However, it has not at this point. Enjoy each day that you do not have it!

purelove5 · October 2011

Hello thegirlinorange,

I am very sorry to hear about your Mom. I am glad you found this site as it has brought me lots of comfort. I am 23 and was tested positive for BRAC1 last year and in 2 weeks will be having a bilateral prophylactic mastectomy with reconstruction. My Mom has had breast cancer 3 times and had a reconstructive mastectomy after her last battle. Breast cancer has been around me my whole life. My Aunt passed away from it a few years ago & cousins on my mom's side have passed from it. My sister is 31 and negative. I knew that my chances of being positive were very high considering my family history but I did not know what an emotional road it was going to put me on. I did not expect to feel the way I did when I heard the news. I decided to go with the surgery as I felt it was going to be the best option and even though I have a HUGE fear of doctors and surgery, my fear of hearing I have breast cancer is a lot bigger! I am fortunate that I have the option to not go through what my Mom did. On to the relationship part, I have been with my now Fiance for 4.5 years. From the beginning I have been very open with what I have gone through with my Mom and how much breast cancer has been a part of my life and how important it is for me to be proactive. I know it may be different since we were almost 4 years into our relationship when I found out I was BRAC1 but it is very important that the man in your life is supportive and understanding. The first thing my fiance said to me was "boobs or no boobs, I just don't want you to have cancer." My fiance has not dealt or been around stuff like this at all but has handled my level of stress and emotions very well. I did do a lot of the doctor appointments by myself as I wanted to feel that everything I was doing was what "I" felt was best for me. I of course discussed things with him and he has gone to one of my last consultations so he could meet the surgeon and have him explain & answer any questions. I know it is all scary and you don't want to scare your boyfriend off but it is super super important that you have the support you need. I unfortunately feel there isn't a "right" time to tell someone but I do know it is such a relief once it is done. Even if you are not BRAC positive it is still important to be proactive and know your risk of breast cancer as well as your loved ones. I hope this has helped. I am sure we have a lot of the same experiences and feelings dealing with our Mom's having breast cancer at such a young age. I did not think that going through what I am going through was going to effect me in the way that it did. I know I do not have breast cancer but to deal with these decision at my age and the surgery is overwhelming. Just stay positive, take everything day by day, think things through(you don't have to make a decision over night), and ask your doctors ANY questions you may have. This site has helped me tremendously and let me know that I am NOT ALONE! One last thing, if you do not have the surgery or just decide to be proactive, make sure you are doing MRI's...we are too young for mammograms and ultrasounds aren't the best detection. Eat healthy and be active! Hope you find peace and comfort in it all.

All my love.

How to tell my boyfriend I might have BRCA1?

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