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All TopicsForum: High Risk for Breast Cancer → Topic: Important Links for Newbies at High Risk for Breast Cancer

Topic: Important Links for Newbies at High Risk for Breast Cancer

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

Posted on: Sep 1, 2011 06:54PM - edited Aug 31, 2015 01:53PM 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:

We hope this helps!

--The Mods

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Apr 18, 2014 04:34PM - edited Apr 18, 2014 05:21PM by holytoo2

This Post was deleted by holytoo2.
Dx 2/28/2014, IDC, 1cm, Stage I, Grade 3, ER+/PR+, HER2- Surgery 4/28/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Sep 15, 2014 06:59PM MelissaDallas wrote:

I would like to see the links to research that conclusively determines that my risk is lowered by eating organic or living "green", because I have not seen that and do not believe that either thing had anything to do with my developing LCIS.

Many women do not have access to or the ability to afford "organic".

I do not see how these are "Important" links in my interest.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Sep 15, 2014 10:56PM MelissaDallas wrote:

Why are you not referring them to the "Connect with those with a similar diagnosis" threads for LCIS and ALH instead of to the "benign" thread with the gals with the cysts and fibroids?

If I'm being advised to take Aromasin and have an MRI in addition to a mammogram every year, and have at least an estimated 30% risk, I don't see that I have a whole lot in common with the girls with cysts. My risk is actually higher than a lot of women post-DCIS treatment.

I find this whole post of the Moderators rather unhelpful.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Sep 15, 2014 10:57PM Beesie wrote:

Mods, I'm confused.  Based on the discussions at the time the forum was set up, I thought you set up the Benign Breast Conditions forum specifically to address the presence on the board of women who have conditions that are annoying and frustrating, but which DO NOT increase breast cancer risk.  Fibrocystic breasts (without atypia), for example. That was the reason why so many of us were concerned when that forum was set up, because until then we had thought that this discussion board was for those who have or had breast cancer, are high risk for breast cancer, or have breast cancer concerns and are going through the diagnostic process.  

Why are you now directing women with high risk conditions to the Benign Breast Conditions forum?  High risk women, those with ADH, ALH, LCIS, etc., have had a home in this forum (High Risk for Breast Cancer) since it was set up years ago. Are there now in effect two "high risk" forums?  And is there a concern in mixing together women who have high risk conditions and who may require additional screening and follow-up (and possibly other preventative therapies) vs. those who have annoying but totally benign conditions and who are not high risk and therefore don't require special screening or intervention?  

The distinction between high risk conditions and benign conditions (which the majority of women have) is very important to understand, particularly for women who have these benign conditions and who are scared and may worry needlessly (to the point of considering PBMXs, as we have seen many times on this board).

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 16, 2014 01:36AM Moderators wrote:

Points well taken, and thanks for the helpful feedback. We actually are planning on probably taking down the "Organic Living" section, as it is very out of date, and actually we all agree with you. This section stems from a partnership we had some years ago with Stoneyfield Farm. 

Also, we did remove the link to the benign conditions. Please continue to share your comments. 

The Mods

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Nov 12, 2015 06:22PM - edited Nov 12, 2015 06:25PM by LAngel

What is a Fibroadenoma? I had one removed when I was 31 years old. The doctor didn't even tell me anything about it, but when I asked he didn't seem like it was nothing. But then nothing was done about it. That's 30 years ago, now I have a sister that died from breast cancer, she had estrogen positive cancer in her milk ducts, whatever that is. It's all so confusing to me, I don't know what to do, and sometimes I just don't care anymore, because the doctors I see don't seem to care, when I talk about this to them, they seem like I'm taking up so much of there time and just want me to stop talking so they can leave the room and go to other patients that are waiting.

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Nov 15, 2015 04:00AM Bunnyhuggr wrote:

Hi LAngel, here's a link to a page on the American Cancer Society's sie about fibroadenomas: http://www.cancer.org/healthy/findcancerearly/wome...

They're benign but having them does increase your risk for getting breast cancer.

I know what you mean about doctors seeming to be in a hurry to get you in & out as fast as possible. It's probably frustrating for a lot of them as well. They're under pressure to see so many patients a day & don't have as much time as they'd probably like to spend with each patient. It seems like HMOs are especially bad that way, some of them anyway

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Nov 15, 2015 04:34AM marijen wrote:

How do we really know we're high risk until someone in the family gets tested? Now that I have BC are my sisters and nieces high risk? Do they get genetic testing and I don't? I'd like to ask the doctor for a genetic test, when he asks why I will say I am high risk. He will say who in your family has cancer? I will say I do.

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Dec 31, 2015 12:55AM oceanspirit55 wrote:

Hello everyone... I am sixty years old and I was recently diagnosed with focal atypical lobular hyperplasia. I then went to speak with a genetic counselor who would not recommend the gene testing based on my scant knowledge of breast cancer on my mothers side. I do know that my mother was placed on Tamoxifen but that is all I know. My surgeon wants to start me on Tamoxifen now. She will not give me the prophylactic mastectomy that I want. Being at high risk to develop breast cancer, I just do not understand this refusal. I am, of course, seeking a second opinion but I am worried that I wIll meet the same resistance. Any thoughts please

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Dec 31, 2015 02:14AM LisaAlissa wrote:

Interestingly enough, the FORCE website (Facing Our Risk of Cancer, Empowered) has a pdf flyer titled "Breast Cancer Screening for High Risk Women" which describes "women with a breast biopsy that shows changes such as atypical ductal or lobular hyperplasia" as having "intermediate risk" (more than average, but not as much as "very high risk"). That flyer (and of course the website) will have links & phone numbers to help you identify experts than can help you decide on appropriate screening or prophylactic measures.

You may find additional information pertinent to your situation, which will help you make the case for prophylactic surgery...or you may find information which will change your mind and decide to simply proceed with enhanced surveillance. You might even find a clinical trial you might want to participate in.

I'm so sorry that you're having to deal with all of this.



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Jun 24, 2016 12:53AM 49nscared wrote:


Del Dx 5/11/2016, IDC, Left, 6cm+, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 6/13/2016 AC + T (Taxol) Surgery 11/28/2016 Mastectomy: Left Radiation Therapy 1/9/2017 Whole-breast: Breast, Lymph nodes Radiation Therapy 1/9/2017 Whole-breast: Breast, Lymph nodes
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Oct 18, 2016 07:22AM LewisThomas wrote:

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

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Dec 29, 2016 07:12AM JustJess2016 wrote:


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.


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Dec 29, 2016 09:25AM - edited Dec 29, 2016 01:14PM 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 17, 2017 05:21AM 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 11:47AM 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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