I was diagnosed with BRCA2 gene mutation at 26 yo

Brestans

I was diagnosed with the BRCA2 gene mutation when I was 26 years old.

In October 2013, my mom found a lump in her groin and went to have it checked out. The first Doctor she saw said she had a 75% chance of it being cancer and referred her to a different Doctor. When she saw the 2nd Doctor, he said he believed that she only had a 10-15% chance of it being cancer.

My brother and I were in the car on the way to the hospital (it was 2.5 hours from where we live) so we were excited to get there, see her and celebrate the good news. Because of the scare, she decided to have her 2nd and last ovary removed even if it wasn't cancer. On October 31st she went into surgery to have this removed. The Doctor told us if it was a short surgery, around 4 hours, then she more than likely didn't have cancer, however, if it was a longer one then it probably was cancer. My brother, grandma, grandpa, great aunt & uncle were in the waiting room all day. After a few hours, with no updates we were getting worried since it was going on longer than the Doctor said it would if it hadn't been cancer. After about 7-8 hours, we received the bad news. It was cancer - Stage 3C (which, from what I understand, means the cancer spread into her abdomen). I don't fully understand it myself, but the Doctor said that 3C was a better diagnosis than a regular 3.

Because it turned out to be cancer and because of our prominent family history for cancers, it was recommended that she get a genetic test done to see if she had the mutation. After speaking with Geneticists, we found that only about 10% of women actually have this gene. Lo and behold (our family should win the lottery every day with the luck we have!) she tested positive for the BRCA2 gene. Because this gene has a 50% chance of being passed down through generations, I decided to take the test.

I never really had a gut feeling that I had this gene until my mom and I were in the car on the way home from the Doctor. We started talking and all of a sudden it hit my mom and I. We are way too much alike for me not to have this gene. Growing up in a small town, where she grew up as well, I was always told 'you look exactly like your mother!'. As a teenager, I got sick of hearing this, now however I take it as the best compliment in the world. People even say we laugh exactly the same and it's scary when they think that mom is next to them, but look to see me there instead! I know physical traits don't factor into this, but we just got this feeling at the same time.

Needless to say, when I received the phone call and the Doctor told me the diagnosis, I was not surprised in the least. From there, I started going to Doctors and looking into my options. They went over medications that I could take (though they didn't have much data on how/if these medications really worked with women under 30-35) and optional surgeries I could undergo to decrease my chances. I was overwhelmed with information. I decided not to go with the medication as they didn't have the data proving that it really did anything in my case.

Surgery sounded scary and I wasn't sure what I was going to do at first. Finally, after speaking my mom and some friends, I realized that I would much rather drastically decrease my chances of developing breast/ovarian cancer now, rather than go to the Doctor and always wonder 'is this going to be the time that they tell me I have cancer?'

They let me know that it's recommended to remove the ovaries, fallopian tubes and uterus when I'm 35-40, or after I've established my family. I didn't realize, though, that they were more than happy to do the double mastectomy ASAP! I figured it would be a few years and then I would have this surgery done. When we were going over dates (thinking for few years in the future) I let them know that I wanted to do it sometime in December, due to my work schedule. I was surprised when they started looking at dates for that December.

My mom and I talked about this more often than not, since it is a huge decision to make, and I decided that surgery was the best option for me. We scheduled the surgery and about 8 months after being diagnosed with this gene mutation, I had a prophylactic double mastectomy. Most of my family thought this was extremely drastic and thought it would be better if I just kept an eye on things with regular screenings. Even with most of my family thinking this, on December 3rd, 2014 I had the surgery.

I was discharged on December 4th and started the ride with mom to her house so she could take care of my while I recovered. On our way home, we stopped at my grandparents since it was on the way. I was happy to tell them, even though that was the worst I felt throughout the entire thing so far (the car ride didn't help) that I did not for one second regret my decision to have this surgery. The rest of my family heard me say this a few weeks later, and now they understand that it was the best decision for me even though it was drastic.

Before the surgery, I can honestly say that I loved my breasts and never wanted to change them. They were perfect to me! Now, 4 months after surgery, they may not be perfect and may not look like they used to, but I can say with 100% certainty that I would make the decision to have this surgery a thousand times over. While it may not be the best option for everyone out there, it was certainly the best option for me.

I'm sorry for the long novel, but it feels good to share my story with others. Of course, my family and friends know all about it, but they don't fully understand as they do not have this gene. If my story even helps 1 person with this gene, it'll be well worth the time it took to write it! If anyone has questions, I am completely open and willing to answer anything! Here's to us women out there surviving with this gene, we are more than pwerful!!

Hopeful82014

Brestans, thank you for sharing your story and taking the time to tell your tale so beautifully. I'm sure it will help women in similar situations.

I hope your mom is doing well with her cancer and that your decision will help you avoid ever having to deal with a cancer diagnosis yourself. You're lucky to have each other to lean on through all this. Best to both of you.

Moderators

Brestans, welcome to Breastcancer.org and thank you very much for your post. Sharing your story will help others as they struggle with this issue and try to make the best decision for their particular situation.

Best wishes for you and your mom.

The Mods

Brestans

Thank you for your replies and your words of encouragement!

Mom and I are both doing great! Mom ended Chemo a year ago in late March and has been cancer FREE since. Her Doctors let her know that this is a HUGE milestone for her. Since it has been a year, if it does decide to come back (which it better not, or i'll have some words!) she will have so many options available to her. She will be able to undergo the same treatment, if necessary. I am very hopeful that she has kicked it in the butt and it won't dare try to come for her again!

I'm healing beautifully and my Doctor even gave me the go ahead to start playing in my Sand Volleyball league later this month... eek!

Again, thank you for your replies and kind words. It is nice to know that my story has been heard. I wish the best to both of you!

elisewin

dear Brestans,

Good luck to you and your mon!

I'm in the process of getting tested for braca but I'm scare for a ovarian cyst that the gyro suggest to remove.

May I ask how are you keeping your ovarie monitored?

Thank you

ALHusband

Thanks Brestans. My wife is BRCA2 positive and had both a double mastectomy and Prophylactic Oophorectomy/Hysterectomy. Unfortunately, we found out about her BRCA2 mutation AFTER she was diagnosed with Triple Negative Breast Cancer. That said, I think you did the right thing. Easy for us men to say, I know.

Brestans

Hello Elisewin,

Thank you for wishing my mother and I 'good luck'! I can understand being scared of a cyst.

In order to keep an eye on things, my doctor has me on an every three month schedule. Every three months I will either have a pelvic exam or an ultrasound to keep an eye on things. I also have my blood drawn every three months so thy can check my CA125 count to see if it is within normal range. When I am between 35-40 (or after I have established my family) the doctors are suggesting that I have my ovaries, fallopian tubes and uterus taken out too.

I hope this helps! Please let me know if you have any more questions!

Brestans

Hello ALHusband,

I'm sorry to hear that you found out about the BRCA2 gene mutation after being diagnosed with Breast Cancer. Please let her know that she is being thought of and I hope everything turns out okay. Even though you're a man, it's still nice to hear thoughts and stories from everyone. You may not know exactly how it affects us, but these things do affect you as well!

scarletblue

Thanks for sharing this! I am in a very similar situation as you...but 37, not married, and no kids. I definitely want to wait on the ovary/uterus/tube removal because I still hope to have kids in the near future. I have been concerned to go ahead with the mastectomy due to my wanting kids also. Can you give me an idea of your thought process on this? I have always heard that it is best to have breast surgery after you are finished having kids due to the fact that the breast go through so many changes during pregnancy. I still think I want to go ahead and do it, but I'm just not sure. Glad everything went well for you and your mom is cancer free! Cheers!

Brestans

Hello scarletblue,

Honestly, I did not even think about my breasts changing when I decide to have children. I had so much to think about and my doctor didn't mention it to me so it really didn't cross my mind. A lot of what I thought about was just making sure that my chances were decreased and not wondering when I was going to go to the doctor and find out that I now have cancer. I wanted to make sure I did everything I could to diminish those chances. I completely understand that it bis a life altering decision and should not be taken lightly. On the bright side, if you do go through the surgery and you do change dramatically after children, you could have them updated let me know if you have any other questions or if I didn't help answer your current one!

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scarletblue

Thank you so much, Brestans! That makes me feel better. I hadn't thought much about the breast changes either until someone made a comment about it in a completely random conversation, so it made me curious. I am 90% sure I will go ahead with the surgery, but I can't get in to see the best PS for reconstruction in my area until 6/21. I just had my mammogram today and MRI is scheduled for 2/12. Hopefully everything will be clear, and I can move forward from here. I really appreciate your advice and quick response! Thanks again

Brestans

No problem! It's a tough thing to go through, so I want to make sure I can help anyone I can I'm glad to hear you have appointments scheduled to keep on top of things before any surgery happens. Good luck to you!

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Nicola16

thank you for your post. I found out I was BRCA2 positive when I was 24, I am now 28 and have two children - time for me to start seriously considering any preventative measures.

My mother had surgery to remove both her breasts and ovaries as a preventative measure as she has lost 4 aunts to cancer (all my grandmothers younger sisters), last year my grandmother who is 82 had one breast removed due to being diagnosed with breast cancer (and here we were thinking she had escaped it!). Lucky my mother had her surgery, they did a biopsy on a mole that was on one of her breasts and it was a melanoma about to get into her bloodstream - caught just in the nick of time

I'm glad you made the right decision for you, your post has given me the guts to go ahead and start making appointments to see where I should go from here - at this stage I believe I want the surgery and not the medication. I want to be around a very long time yet for my kids :-)

Moderators

Nicola16, thank you for opening up and sharing your story with our community at Breastcancer.org. We understand how difficult these decisions can be, and hope you find much support here!

bosterh315

A great novel it was, you should look into writing stories. ☺ I'm so glad I can advertise it. I was found brca1 positive and brca2 v.u.s just last week. The report literally showed up on my doorstep and I couldn't believe it. I've been restraining all this new information and try to make sense of it. My doctor's and genetic consoulers and especially the others who have shared their stories on this website have helped me so much. I just want you to know that you have done the same and have help provide me with the tools I need in the filing days to make the best decision possible. Thank you for being such a strong person. Goodluck

ccmarie22

Brestans ...I know it has been a while since this post, but your story and mine are so similar! BC at 26. BRCA2+ bilateral mastectomy. Tamoxifen for 3 years. I am 37 now, and it is time to think about an Oophorectomy. I haven't had menopause and I still have periods.I am not afraid of the pain, or downtime. I am afraid of the sexual side effects and weight gain.

Has anyone had one, If so, please tell me how bad it is.