Topic: High Risk for Breast Cancer? Start Here

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 1, 2011 12:54PM - edited May 18, 2022 06:42AM by moderators

Posted on: Sep 1, 2011 12:54PM - edited May 18, 2022 06:42AM by moderators

moderators wrote:

Helpful information for those who are at high risk for breast cancer:

Some suggestions from the main Breastcancer.org site:

In addition, there are also important Discussion Board threads for those at high risk for breast cancer, where you can find and ask for advice from others who are where you are, or from those who have been there:

Or, post right here in the High Risk for Breast Cancer forum.

We hope this helps!

--The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Jun 23, 2016 06:53PM 49nscared wrote:

test

Del Dx 5/11/2016, IDC, Left, 6cm+, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 6/12/2016 AC + T (Taxol) Surgery 11/27/2016 Mastectomy: Left Radiation Therapy 1/8/2017 Whole breast: Breast, Lymph nodes Radiation Therapy 1/8/2017 Whole breast: Breast, Lymph nodes
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Oct 18, 2016 01:22AM LewisThomas wrote:

Thanks for sharing these links here. They have good information.

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Dec 29, 2016 01:12AM JustJess2016 wrote:

Hi,

I'm new to this site. I was just given my results for the BRCA genetic testing. It came back positive for the BRCA 2 gene.

I am looking into getting prophylactic bilateral salpingo-oophorectomy w/hysterectomy. Has anyone had this done as a preventative measure? What has your experience been like?

I don't know anyone that has done this so any information would be greatly appreciated.

Thanks!

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Dec 29, 2016 03:25AM - edited Dec 29, 2016 07:14AM by moderators

Hi JustJess, and welcome! We hope you get replies on this thread soon. In the mean time, you can make a search to see what others have posted about it on the boards. If you go to the Search function in the blue menu and type in "salpingo-oophorectomy hysterectomy" (without the quotes) as your search term, and you'll see every time these words have been mentioned in a post, and can then check out the thread-member and even contact them via private message if you have questions.

Hope this helps! Let us know how you're doing.

The Mods

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Feb 16, 2017 11:21PM Synergy wrote:

I am at risk with two high risk factors. I really don't understand the point in a complete breast removal or taking dangerous drugs that give you four other cancers for a 7 or 11 percent increase in breast cancer.. WHY don't we have better answers in the area of high risk so called precancers and why are we still in the dark ages with treatment?

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Feb 18, 2017 05:47AM brca2chick wrote:

JustJess2016 - I am also a BRCA2 carrier. I just had a prophylactic double mastectomy but have not yet had the ovaries removed.

I am only 39 so I prioritized the breast surgery first due to the increased risk at 40 and a significant family history.

My understanding is that my ovarian risk is not significantly elevated until 50 so I am waiting a few more years (with monitoring every 6 months) to do the ovary removal. Once I do I will be able to have some hormone replacement since the mastectomy was already performed.

Agree with Synergy it would be nice to have better options but given the statistics for BRCA1/2 I am not confident there will ever be better options to prevent cancer. Treat cancer yes, but my goal is to not have cancer at all (ambitious I know).

Happy to share experiences if you want to reply here or feel free to private message me.

39 yo Mom of 2 boys (5, 6); daughter of a 2 time survivor now living with MBC. Surgery 1/31/2017 Prophylactic mastectomy: Left, Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap
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Mar 7, 2017 02:30AM - edited Mar 11, 2017 11:37PM by jacck1234

hi

Every woman is at some risk for breast cancer, Approximately 70 percent of women who develop breast cancer have the type of cancer called hormone receptor .This association may, therefore, prove to be more relevant among women with elevated levels of these hormones. Although many factors that influence risk have been identified, it is still not possible to determine which women will develop breast cancer and which will not


thanks



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Mar 9, 2017 01:07AM Synergy wrote:

Maybe not, but I think many of those of us in the "high risk" categories are looking for safer solutions than dangerous drugs or removing breasts.

Why isn't there more focus on PREVENTING these cancers? I had six mammeos this year, two biopsies (one surgical) and ended up being told I have "extensive LCIS" and ALH. Then I was told to come back in a year for a mammeo...thats all! I have had to research myself about these precancerous ? conditions...nothing was really explained to me about them.

I want to know what I can do to lower my risk. If there is nothing, I am fine with that but I am one of those people who wants to know what can be done without putting myself at risk for other cancers. I learned early several years ago when dealing with autoimmune disease issuesthat I must advocate for myself!


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Mar 11, 2017 04:50PM brca2chick wrote:

Synergy - google epigenetics and you will find a lot of information about risk reduction.  There is also lots of information out there about reducing inflammation in the body (which can increase risk) and also creating an alkaline environment (shown to prevent cancer).

There are lots of options out there.  You have to figure out which choices you can live with whether they be lifestyle or surgicial.  No one can give us guarantees...but if you aren't getting the information you need from your doctors I would consider finding new doctors.

I love mine - they were candid and honest and gave me facts not lectures.  They answered all my questions and were clearly comitted to helping my navigate this scary world.  But even with positive lifestyle changes & vigilent monitoring I felt compelled to do the mastectomy because I know from my family history that is what is most effective for our particular expression of the mutated gene.  I don't advocate that my choices are right for everyone with a genetic risk factor, but it was the right choice for me.

I am almost 6 weeks post-surgery and because I did this early before any signs of cancer I was able to have a nipple & skin sparing mastectomy.     I am very happy with the aesthetic result and I know now from the pathology that something bad was already brewing on one side.  

I don't feel butchered, mutilated, or sad - quite the opposite.  I feel empowered and strong for taking control of a disease that has been a dark cloud in my life for 20 years.  I share my story because I want other women to know it doesn't have to be awful, or disfiguring, or even a poor choice.  People have said to me "I'm sorry" when they heard what I was doing...but I'm not.  I am relieved and happy and that is all I wish for anyone on this same journey :o)

39 yo Mom of 2 boys (5, 6); daughter of a 2 time survivor now living with MBC. Surgery 1/31/2017 Prophylactic mastectomy: Left, Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap
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Mar 11, 2017 05:22PM melissadallas wrote:

The "alkaline" diet/environment thing is NOT shown to prevent anything, and your body is designed to maintain and correct your PH towithin a very tight range.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes

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