BRAC testing and PBMX

Anonymous

I have a scheduled PBMX for June 21'st after 6 years of dealing with MRI's, Ultrasounds, needle biopsies, lumpectomies...it seems like the right decison.  As a part of that-and perhaps a bit late, I've been getting my "health care" in order.  Hysterectomy about 10 years ago left my GYN appts. spotty-and no one could ever tell me what I needed to go there for anyway-but I still have my ovaries.  After my last BS (new BS appt). she said, go to the GYN.  So I did.  Only to find out that with my family hx.-one aunt who "may" have died from ovarian cancer (my mom was somewhat estranged from her) and a maternal grandmother who died from BC, I am now at risk for ovarian and breast cancer.

 So I thought I was making a proactive decision, only to find out that the ovarian issue may be more relevant?  Not so sure about that.  I'm going forward with the PBMX as scheduled and then will have the testing for the BRAC genes to see if I have to have my ovaries removed.

I feel like the waves just won't stop hitting.  I'm trying to be as proactive as I can, and I want to be, but my anxiety is beginning to get the better of me...and what do I do about my 21  yo  daughter-who's graduating from college this weekend?

 Okay, one step at a time. 

slinky

When I found out I had cancer, I knew immediately that I wanted a BMX.  I did not want to have to deal with this on the other breast.  While waiting for my BMX surgery, I had the gene testing done.  One week before my surgery, my surgeon called to say I was postive for the BRCA1 gene and I made a great decision with the BMX.  My oncologist has suggested a full hysterectomy - I am interviewing gynos for this procedure.

This whole journey has been about decisions...should I do chemo? radiation? It all comes down to what feels right to you and statistically what will produce the highest survival rate with the best quality of life.

Enjoy your daughter's graduation from college - you deserve to pat yourself on the back for raising a child that has finished college!

Anonymous

Thank you .  Tonight, for some reason, I'm questioning myself, and I need to go, as you said, and enjoy my daughter's graduation, and then go from there. Pat

dansbetta

Hello dear rehm046.
The main thing, do not worry. All will be well.
The average woman has a 1 - 2 chances out of 100 for ovarian cancer for life. This means that out of 100 women 1 or 2 to develop ovarian cancer at some point in the course of life, and 98 or 99 not fall ill.

But these figures do not apply to women who have burdened with a family history of ovarian cancer (Family history means the presence of relatives with the disease). The chance of such women for ovarian cancer is much higher. Some of these women also have inherited a particular genetic variation, which is called BRCA genetic variation. Their chance of developing ovarian cancer is very high.

Surgery to remove the ovaries is called ovariectomy. Women, whose risk of developing ovarian cancer is very high, may decide to make such an operation, to reduce the risk. Taking a decision, take into account the following factors:
You can't make the decision on carrying out of this operation until't know how high your risk of ovarian cancer. Your doctor will help you learn about this, talk with you about your medical history and family history. You can also talk to a genetic counselor, an expert who helps people to learn about their cancer risk.
If your cancer risk is low, removal of the ovaries with the aim of preventing cancer is not recommended.
Your decision will depend on how high your risk, as well as from your health, age and personal feelings.
Removal of the ovaries significantly reduces the chance woman's chances of getting ovarian cancer. At the same time remove the fallopian tubes. This is one more place where it may be cancer.
Cancer perhaps even after the removal of the ovaries.
Without ovarian you will not be able to become pregnant and have children. The removal of the ovaries causes menopause.
Many women who have inherited a genetic variation of the BRCA, doctors recommend that you should remove the ovaries to prevent cancer. For most women, there is no this is a rare genetic variation.
Sometimes women feel that their risk is higher than it actually is. Therefore, it is important to talk with your doctor or genetic counselor to understand how high your risk.

What are the benefits of the removal of the ovaries?

Studies show that surgery can reduce your chance of developing ovarian cancer at 85 - 95%.

This means that it can reduce your risk of ovarian cancer, and you will have the risk of the same or a little higher than the average woman. The figures given below, will help you understand.

What are the risks of the removal of the ovaries?

If the ovaries are removed, you can no longer have children.
In the absence of ovarian you will come sooner menopause. Menopause often accompanied by symptoms such as hot flashes and vaginal dryness. It also increases your risk of heart disease and osteoporosis. Although many women in menopausal period take hormone therapy to prevent symptoms such as hot flashes, hormone therapy is not recommended if you are trying to prevent ovarian cancer and breast cancer.
Removal of the ovaries does not always prevent cancer. Sometimes the woman is sick of a cancer before the operation, but does not know about this, because it has no symptoms. And the cancer cells could already begin to spread beyond the ovaries. In this case, with the removal of the ovaries will not remove all of the cancer cells. The cancer can also occur in the abdominal cavity after removal of the ovaries, but this happens rarely.
A recent study showed that women who removed the ovaries before the age of 45, live longer, if they accept the use of estrogen replacement therapy.
One recent study showed that women younger than 45 years old, which removed the ovaries and do not accept the use of estrogen replacement therapy, are more likely than other women to develop heart disease, mental disorders or diseases of the nervous system.
I very much hope, that this information will help you.
Be healthy!

vmudrow

rehm046 - I had a PBMX May 6 of last year - no cancer, but ALH, previous biopsies and family history.  My mom was tested for the BRCA gene and was negative - so I decided to keep my ovaries.  It's hard to know what to do - keep us posted.  hugs, Valerie

beacon800

Based on what little I know, your family history, while significant, is not extremely indicative of a BRCA mutation.  I did genetic counseling at Stanford and ran the BRCA, negative result.  However my mom had bc, so did her two aunts above her.  Her dad had prostate cancer.  Based on this, the oncologist said my risk of BRCA positive was quite low, but we would test to be sure.  She was right, negative result.

What I am saying is that even a family history does not guarantee a BRCA positive, so don't worry too much til you get your results.  Check the website for FORCE, (facing our risk empowered) which gives a lot of info on genetic risks.

mollynminnie

Rehm...

I am positive for BRCA1. This was discovered after I was diagnosed with BC.  I had a BMX and a total hysterectomy as a result of the BRCA1.  I have had no regrets-  had DIEP flap reconstruction and have had NO issues from the hysterectomy.  I look and feel great.  Please let me know if you have any questions at all-  I'd be happy to help.

Molly

Anonymous

Thank you all for the support.  I have had a hysterctomy, about 10 years ago, for other reasons, but had them leave my ovaries so as not to be put into a premature menopause.  Really, I'm not that worried about having my ovaries removed-at this point-it's a moot point.  What I am worried about is the outcome of the testing as it relates to my 21 yo daughter.  My 81 yo mother cannot remember what my aunt died of (uterine vs. ovarian cancer) so I will go ahead with the testing.

  The PBMX is scheduled and is not going to change because of this new informtation.  I think I just felt like every thing was unraveling around me.  I had made, what I consider, a proactive decision, and then, BOOM, the other shoe dropped.  I had forgotten about my maternal aunt because my mother was not very close with her siblings-and until I was sitting in the GYN office last week and she pressed this issue, I honestly hadn't thought about it.

  Go figure, I'm a nurse, and generally know about these issues.  Amazing how it doesn't fit or work for you when it's YOU that's involved. 

  I will have the testing during my recuperation from by BMX and then will go from there.

 Again, thanks for your thoughts, support and well wishes.  Some nights, I don't know what I would do without this place to come and read and think!

  Pat

vmudrow

rehm046 - my mother, an aunt and cousin, and possibly my grandmother all had breast cancer - but my mom (we had her tested because insurance paid for it) tested negative - so I think I would be negative as well as my 21 year old daughter.  It can also come from your father's side - as well.  The genetic counselor did say that they think it is an unknown mutation with so much in the family.  An interesting note - I think the only place they do the testing is here in Utah at Myriad.