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Mom is BRCA2 positive, I don't know if I want to get tested

lisazee
Posts: 12
Joined: Nov 2009

Hello ladies,

We found out two weeks ago my mom is BRCA2 positive... Her mom died of pancreatic cancer at 60 (I never knew this was related) and mom was 61 when she was diagnosed with ovarian cancer. She is "insisting" I get tested...

I am 36, married 8.5 years, no kids yet (if ever, but that's another story LOL). I don't know if I'm willing to take the drastic measures (prophylactic surgery) that would require me knowing if I carry the mutation as well. My thought is - I can just live like I'm positive: go back on the pill (I have an IUD), lose weight, get thorough checkups, etc. I worry about a positive test meaning worries about insurance coverage, pre-existing conditions, etc. And even if I did consider surgery of any sort, I am not in a position financially to take weeks off work for recovery from a voluntary surgery. I have FMLA coverage to take care of my mom, so none left over for me. And I was previously denied for short term disability... PLUS I may still decide I want kids. So why even know?

I don't know...

If your mom is positive, did you get the test? Or, knowing what you know about me, what would you tell me to do if I were your daughter?

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

With or without ID of specific genes, I know OVCA runs in my family. At 82 my grandmother died of internal bleeding (read OVCA) and now my own mother is following her at 79. If that is my future, great. I'll be happy to live that long and then go down with something I understand. If it comes earlier, so be it.

That's my position, for me, but every woman must decide for herself. At your age and with our current health care system, I wouldn't rush into getting tagged right now. Just look after your mom, and don't fret over what might be in your genes.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I think if I were planning to have children, I'd want to know if I carried the gene. I only have sons, and yet I think of my granddaughter and secretly worry that I might somehow have genetically put her at risk. I've had nightmares about it, in fact.

As far as having a pre-emptive hysterectomy, I so very much wish I'd had a hysterectomy in my 30's!! My cancer had no symptoms and no family history, and so I never ever considered that type of elective surgery. But in 20/20 hindsight, I think all of us on this board wish they'd had hysterectomies when they were younger and prevented our cancer journeys.

Margaret Caroli...
Posts: 17
Joined: Jan 2010

I have read & told by M.D. having a hysterectomy does not prevent OV. I had a hysterectomy in my 30's (they did leave ovaries because of my age) and no history of cancer in my family. I was dx with OV at age 70 with stage IV in 2008. Hysterectomy doesn't prevent because it can't get all of the cells.

Margaret Caroli...
Posts: 17
Joined: Jan 2010

Can anyone tell me why everytime I post there is an edit sign before reply at bottom?

jamilou's picture
jamilou
Posts: 202
Joined: Mar 2005

Lisazee
My mom was diagnosed with ovarian cancer at 63. I was diagnosed at age 40. I was tested for the BRCA gene at age 49. My test showed I was positive and I chose to have a Propylactic mastectomy done because my risk for BC was about 87% in my lifetime. My insurance paid for the surgery because of my high risk. There is legislation called Gina's law that states insurance can not use your BRCA status against you. I have 2 daughters and 3 sisters. My daughters (20 and 23) chose to test and are both negative. 2 of my 3 sisters have tested and they are both negative. My third sister, like you, doesn't want to know. She is afraid of the results and is not sure what she would do if she found out she is positive. For now her doctors are watching her more closely. She has already had a complete hysterectomy but now has to be concerned with her breast. It really is a tough decision. It took me 2 years of "thinking" about it before I finally got the nerve to do it. Since you don't have children you will be doing the testing for yourself. I had two daughters to think of when I made my decision. My sisters also have children and needed to know for them. You may want to go talk to a genetic counselor before making a final decision. They can help you through the process. Your mom's oncologist can put you in touch with one. There is a website called facingourrisk.org that is for women and men with the BRCA gene. One of their boards is for women who are only doing surveillence. They may be able to help you. Good luck with your decision. I know that it is such a difficult choice and so very personal.

Jami

NCEllen's picture
NCEllen
Posts: 117
Joined: Nov 2009

Hi- I have been thinking about this subject for some time as well. We haven't had the talk about testing yet and it's been just over a year since my diagnosis and treatment. My daughter is 28, newly married (1 year) to a wonderful man who is also a Marine, which means he can be deployed often. They both want a big family, but understood the risks associated with his job before this hit. With my diagnosis, I'm sure it plays a great role in thier hearts for planning a family. Also, his younger brother died at the age of 23 from non- Hodgkins lymphoma/leukemia. No evidence in his family history prior to this happening.

I did all the 'right' things that are supposed to reduce the chances of having OVCA: birth control pills, early pregnancies, breast fed, tubes tied AND no family history of cancer. ?????? so where did this 3C come from?? We are also treating my husbands prostate cancer, so our 31 year old son who doesn't have children yet is dealing with this potential hereditary (?) factor from Dad - again no family history on my husbands side of the family that we know anything about.

Even if they don't get gene-tested, they know they're in for a 'what-if' future. My son will probably get earlier PSA teasting than is the standard norm, but even that screening for men has come into question lately. I'm blessed with a marriage of 35 years, two (now three) wonderful children with all of our memories AND I'm hopeful that the cures are still coming!!!! My husband has done well on a clinical drug trial which is quite promising and will be released later this year for public use for prostate cancer patients. He's lived with it for 8 years, and now in that time the research is coming round for his diagnosis. I feel that it's coming round for OV too. We have to keep strong and striving for the cure so that life doesn't just stop.

If both of my kids took these cancer beasts that were handed to them with dispair, what kind of life would that be?? We as parents were blindsided by these diagnosis' and I won't look back to say 'what if' we did know what the future was going to be. True, ignorance is bliss, but informed and educated can be a living hell. God controls my life and that of my family and we are there for each other.
For now they live,laugh, love and enjoy life. They give that to us and we rejoice daily with them - we also hold each other tight when the bumps come along. It makes us strong and we can face any choices and the future together however hard it will be, we know that's a given. I want my children to be happy but I know they will have to weigh the options and make their own family choices - it is very personal and hard, but we have to keep looking for the hope of tomorrow and tomorrow is today. Sorry this is a long post, but I'm glad the thread started
Prayers to you and to all who have to carry this in the pocket of life - Loves, sunshine and robins -Ellen

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I have one daughter and 4 granddaughters. I plan on asking my doctor about getting the test done and, if I am positive, having "the girls" tested.

There is no family history of female cancer in my genetic background and I had no risk factors. I still think about the genetic link, however.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Having had both breast cancer and uterine papillary serous ca, and with 2 newly-wedded children, plus having a sister who had breast ca in her 40s, another who had melanoma at 40, and a mat gm who died of cancer unknown etiology, I chose to do gene testing. Results were negative but came with the caveat that this only relates to currently known gene mutations. And as well, it notes that other environmental conditions could also be cause for familial cancer trends. So all the hype for the test - pushed for by all my docs - and the negative result refers to only one possibility of potential for developing cancer. Test does not provide all the answers that we would like it to; a science still in its infancy.

However, all family members were much relieved - so for their peace of mind, I guess it was worth it.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

My oncologist suggested I get tested due to my young age at diagnosis. No family history of breast or ovarian. Smoking related cancers in grandparents. Low risk factors: first child at 20yrs old, breast fed all 3 of my children till they were over 1yrs old. I didn't start my menses till I was almost 15. My BRCA 1&2 were negative. If I were positive I'd want my daughter tested.

msfanciful
Posts: 580
Joined: Nov 2009

I just had my brac-analysis tests performed a few weeks ago.

It is now nearing the time for me receive the results of which I am nervous with anticipation. I think just to know in itself is an impowering thing.

I am glad I took it no matter what the outcome because I have a beautiful 31 year old daughter (Bianca), who I wouldn't wish this disease on for nothing in the world . But if it happened to turn out positive, I would definitely insist that she begin a regular regimen of having preventative tests, etc., performed.

Sharon

zinaida's picture
zinaida
Posts: 220
Joined: Oct 2007

I am BRCA1 positive.I have 35 years old daughter, two grandsons and one granddaughter. My daughter do not have insurance to do the test. She told me, she will do nothing about it, because she do not like to go MP in her 30th. I feel sad, I cannot help her. Love you ladies. Cannot write down much, not have a good english, but I am here every day and read every message. God bless you all, Zina.

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

Zina,

At least your daughter is informed and will know what to watch for. I have not decided yet about testing, I'm worried it will make it difficult for my daughter to get insurance. However, there is now a family history of Ovarian Cancer, so she and her doctor can be more proactive. Semi-Annual visits instead of annual visits. And no "Watching and waiting".

Hugs!

Leesa

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Doesn't hurt to get tested...When my mother was diagnosed, we did a history. her mother died of cancer..went into the hospital with ascites...died 2 months later..Great grandmother died of ascites related cancer...This caused me to have a pelvic ultrasound..and a CA-125....it was elevated....2 months in a row...surgeon took my fallopian tubes and ovaries...immediately....we all have different stories.....trust yourself..you'll know what to do....and what is best for you.....there is no right answer for this...just the right course for you...there are pros and cons to both sides...surgical menopause is well,,interesting....

groundeffect
Posts: 651
Joined: Mar 2003

Because genes are brought to you by both parents, you should look at your dad's side equally as your mom's.

My dad's mother died at 56 in 1928. Her cause of death was listed as stomach cancer, but I've read that was what ovarian was frequently listed as before doctors started sorting it all out. My family also has colon, breast, prostate, and melanoma cancers in addition to my ovarian.

I've considered having testing done, but have no children. My thoughts right now is that I get tested for everything enough without adding that!

You don't mention if you smoke or not. That is one thing that pancreatic cancer seems to be related to, and is the only thing that all of our support group did-we had all quit long before diagnosis-but my oncologist quickly discounted that as a factor.

I'm sure you can have testing done by a private lab that would not have to report the results to anyone but you. If you're really interested, you might go that route.

lisazee
Posts: 12
Joined: Nov 2009

Thanks ladies, so much for all your input. You have all confirmed what I guess I already knew - it's a personal decision that I crappily have to make for myself. I haven't even told my husband about my mom's test. He lost his dad suddenly and horribly (his dad drowned right in front of him) at age 13. He's so paranoid about losing me that he has put himself in charge of my asthma meds as it is. This will eat at him like nothing else, and I'm positive he'll want me to get tested and do everything medically possible if I were to be positive. It's just a lot to have on my mind all by myself is all. So I thank you all for even considering this for me. :)

sherirs04
Posts: 13
Joined: Feb 2010

If my mom does have the gene, I do plan on getting tested just so I know to get better screening and I do have a daughter. I was reading this link this morning. Question 15 addresses the privacy issue.
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

Sheri

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have consented to the test. My mum had breast cancer at the same age as I am now (she was cured & lived another 30 years. My fathers mum also had it (she unfortunately died from it)and it is not until to see your family tree recorded that you realise that most of my relations died from cancer - it was depressing. However, I have a sister, niece and daughter and I would like to know whether I have the rougue gene so they can be better informed and get screening earlier that the regulations. I will not, in any way feel guilty if I have it because it is not my fault. It would have been passed down to me from my mum or gran. It is so much better to know what is going on in your own body so you can act and do something about it.

I will get my results March 16th, fingers crossed whatever the outcome.

Tina

kgross8400
Posts: 1
Joined: Jun 2012

Yes, you should but it is your decision. You do not have to go through all those surgeries that they are saying and you do not have to go on the pill. I didn't as the pill made me very sick. The thing is you already assume you have it. So, if you are negative then it will be a piece of mind. Next if you are positive now you can go to prevenative care. No surgeries. Your insurance will now cover preventage test that they would not cover. I am brca2 pos. and my sister was too. She didn't know until after she had cancer. I found out at 36. My mom died at 50 with ovarian cancer diagnosised at age 48. I go to Md Anderson every 6 weeks. I havent removed my breast. They feel that my mom problems got cancer at 45 and wanted me to have surgery to remove my ovaries by 45. I did it at 43. I am from Alabama. Knowing and having proof i get to go out there every 6 months to get screen. I get screened with and mri one visit and 6 months later a mammogram then 6 months later mri and so on.. I have regular pap smears but I do a ca125 test that checks the protein in your blood for ovarian cancers if it is elevated that is a red flag and I have a vaginal ultrasound every six months. with out getting tested this would not be available for me. I was doing breast mri's 5 years before it got to birmingham alabama at uab. I also had surgery and they saved my life with precancer cells then ones that 95 percent of the time turns in to cancer and we got it just in time. Like I said it is your choice but remember you already assume you don't have to have surgery you can do preventage tests.

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Hi – I belong to the breast cancer forum and often check up on my other sisters (all of you). I felt the need to respond to your post because we are about the same age, have similar history and have no kids. I was dx at 32 last year. My grandmom died of ovarian cancer (in her 60’s), my great-grandmother died of breast, very young. I was always concerned about my health because of my family history (great-uncles had also been dx with other cancers) so I felt the need to always check myself. I found my lump last year and demanded further testing. Went through lumpectomy, chemo, rad, and now taking a 5 years pill called tamoxifen, which may put me at a higher risk for uterine cancer (and ovary-related issues). I have no choice but to take my treatment with courage and faith.

I decided to test for both genes because of my diagnosis. Both tested negative BUT, I still got breast cancer. I don’t have any kids so I decided to harvest my eggs. I can decide to become a mother (which is risky) later or have a surrogate mother have my child. But at least eggs are there.

I think it is VERY important you get tested because this will give you a better perspective about what to do in your present life/situation, and plan your future accordingly. Preventive measures are nice, especially when you are educated about the choices and can gather some facts. Honestly? I would get tested if I were you. Why? So you can be pro-active about your future. You can save your eggs before surgery (or embryos) so you and your husband can become parents. That can still be a possibility, but most importantly, you can be proactive about your health. No one guarantees anything in life, but if there’s technology available to help us prevent certain situations, why not take advantage of them and be safe?

I think knowing is better than not. I personally wouldn't want to go through life knowing I could have prevented something.

Like everyone else said, this is your decision. But I thought you may want to hear from someone your age, who doesn’t have any kids either and who has a history of cancers in her family. I hope God guides you to making the right decision.

BTW, breast and ovarian cancers relate. There hasn't been solid research about this, but researchers are looking into birth control pills in relationship to breast cancer. The pill itself may not cause it, BUT estrogen can be mean sometimes. My breast cancer was fed by my estrogen (99% estrogen +). Something to think about. Be careful with birth control pills. These can change the chemistry of your body allowing your estrogen levels to go crazy. This is not always an advantage in women.

Good luck!

P.S. My mom tested for both genes too. Her breast gene was negative. Her ovarian gene was inconclusive.

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

Have you ladies noticed that this topic is over 2 years old? I believe the OP has made her decision by now, and may not even be checking in here anymore.

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

I didn't even notice the date. This happens on the breast cancer forum too...and we get so involved with the post, and concerned, that we miss looking at the date. Hope she made the right choice and that she is happy.

Hope you're doing well.

lisazee
Posts: 12
Joined: Nov 2009

Hi ladies,

I was checking in tonight and saw some recent comments. My mom passed away in December and I am quite sure I'm in the throes of major depression. Going to see someone soon. Before she died I had the most beautiful baby boy who is my world. I am so sad he will grow up not remembering my mom.

I never took the test. I have decided that next year is the year. I'm going to focus on losing some weight, getting life insurance, and taking care of this little guy. I'm not emotionally in any kind of place to deal with any other emotional issues right now. I miss my mom... And am so profoundly sad.

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