Posted on: Sep 1, 2011 01:54PM - edited Sep 7, 2017 12:45PM by Moderators
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 ModsLog in to post a reply
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Posts 1 - 30 (30 total)
Sep 15, 2014 01:59PM 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.
Sep 15, 2014 05:56PM 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.
Sep 15, 2014 05:57PM 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).
Sep 15, 2014 08:36PM 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.
Nov 12, 2015 01:22PM - edited Nov 12, 2015 01:25PM 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.
Nov 14, 2015 11:00PM 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
Nov 14, 2015 11:34PM 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.
Dec 30, 2015 07:55PM 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
Dec 30, 2015 09:14PM 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.
Jun 23, 2016 07:53PM 49nscared wrote:
Dec 29, 2016 02:12AM 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.
Dec 29, 2016 04:25AM - edited Dec 29, 2016 08:14AM 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.
Feb 17, 2017 12:21AM 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?
Feb 18, 2017 06:47AM 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.
Mar 7, 2017 03:30AM - edited Mar 12, 2017 12:37AM by jacck1234
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
Mar 9, 2017 02:07AM 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!
Mar 11, 2017 05:50PM 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)
Mar 11, 2017 06:22PM 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.
Mar 12, 2017 01:55AM ChiSandy wrote:
Melissa, so right! My PCP opened my eyes as to how the body wants to remain in a state of homeostasis when it comes to blood chemistry, and how successful it usually is—despite how we supplement or try to deplete it!.
Mar 12, 2017 09:54AM brca2chick wrote:
I have received different medical guidance regarding pH - science isn't as black and white as we like to think. Two people can look at the same experiment and come to different conclusions.
Everyone should do their own research and talk to their own physicians.
Mar 25, 2017 11:46AM NicolaSue wrote:
Synergy - I too have LCIS and like you I would love to be told to do A B or C and categorically it will lower risk. It is a bewildering world of possible drugs, possible surgery etc. Add to that new advice which says exercise 5 times a week if possible PLUS 1-2 weight bearing sessions (um how does one do that with a job and a family...) and then avoid alcohol etc etc. I think the time after diagnosis and before accepting a 'preventive' plan that one is happy with is the most scary time of all. I have a friend with DCIS who says simply that she loves her life and apart from stopping smoking she's sticking with all else that she's done for years. I am at the stage of not knowing what I personally wish to do. The uncertainty of having no certainty is very difficult to deal with. I am sure we will get there in time! Sue
Mar 25, 2017 12:02PM MelissaDallas wrote:
Pretty much what most of us have believed for a long time. Most cancers are a result of "copying" mistakes, therefore, there is not a great deal we can do to prevent it. Not saying being healthy by eating well & exercising isn't being smart, but we have a lot less control over what happens than sometimes we are led to believe. I do believe that if we are particularly high risk, tamoxifen or an AI significantly cuts our risk. Will I blame myself for getting cancer for having a drink or piece of cake or grilled meat, or being heavier than I should blah, blah, blah. Nope. We have said forever that there were a lot of thin, vegetarian runners who ended up here anyway
Mar 25, 2017 04:17PM dAd wrote:
Unfortunately far too many people seem to think they can exert control over their cancer or their liklihood of developing cancer through weird diets or by ingesting weird cocktails of supplements and other snake oils. Some lifestyle habits may impact our susceptibility to cancer but, for the most part, it's a crap shoot.
Mar 30, 2017 11:49AM NicolaSue wrote:
So I wonder what IS a sensible risk-reduction approach with LCIS then?
I'm now around 6 weeks post diagnosis and seen a few doctors and now have a surveillance plan. All the doctors took a sharp intake of breath when they read LCIS on the pathology (I think they all expected it to be poor pathology and that the pathology reviews would show it wasn't LCIS...it WAS!). So after they do their intake of breath and strange face thing, then I ask what I can actually DO. Not much gets said. So in my case I've decided on the following:
More exercise (though not the 5 plus per week recommended just going up from 1 to 2 but I will do 2 every week without fail)
Cutting out almost all alcohol
Diet.....not yet decide what, if anything to change.
Sep 13, 2017 01:01PM Synergy wrote:I have LCIS and atypical hyperplasia and was told my risk was 50% of cancer. I called the Cancer hotline (cancer.gov) and they said my risk is 35%… I agree with Nicola. I am supposed to get a breast MRI in six months. I gotta ask why we don't have better plan for high risk breast that don't involve extreme measures or dangerous drugs? Why is there minimal research in PREVENTION of cancer?
Oct 26, 2017 05:37PM - edited Nov 3, 2017 02:45PM by Di2012
Mar 9, 2018 01:19AM hapi2bee wrote:
My daughter who is BRCA1 positive, had a bilateral mastectomy and oophorectomy at age 40 after a DCIS diagnosis. That was ten years ago and she has had no negative side effects (she loves her new boobs). Her decision was based on family history, I - her mother had stage 3 ovarian cancer at age 51, surgery and chemo -- 22 years later have been diagnosed with BC, DCIS. Scheduled for DMX next month with no reconstruction. My ovarian tumor was estrogen positive, my DCIS is estrogen negative.....it is all very confusing even to an old broad. My concern now is whether my insurance will cover the treatment. Good Luck from another newbie
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