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 10:54AM - edited 6 hours ago by moderators

Posted on: Sep 1, 2011 10:54AM - edited 6 hours ago by moderators

moderators wrote:

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

Some suggestions from the main 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: Surgery 5/10/2022
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Apr 18, 2014 08:34AM - edited Apr 18, 2014 09:21AM by holytoo2

This Post was deleted by holytoo2.
Surgery 4/27/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 3/15/2016, IDC, Left, Stage IV, metastasized to bone/liver/lungs/other, Grade 3, 2/3 nodes, ER+/PR+, HER2-
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Sep 15, 2014 10:59AM 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. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Sep 15, 2014 02:56PM 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. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Sep 15, 2014 02:57PM 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).

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Sep 15, 2014 05:36PM 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 10:22AM - edited Nov 12, 2015 10:25AM 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 14, 2015 08:00PM Bunnyhuggr wrote:

Hi LAngel, here's a link to a page on the American Cancer Society's sie about fibroadenomas:

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 14, 2015 08:34PM 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 30, 2015 04:55PM 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 30, 2015 06:14PM 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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