Onthinice, the problem for those responding is that with the same questions in two places, you may be getting duplicates of the same answers, or possibly conflicting answers without the necessary explanation as to why the answer is different. I've already answered some of your questions in response to your earlier posts and some of my answers have led to your additional questions. But no one reading here except me would have the benefit of that knowledge, and that will impact the relevance of the answers you get.

To help out, here is a link to the thread where you'd been posting previously. Since you were posting within someone else's thread, and since your issues are different, it's probably good to continue here from this point forward. But I hope that anyone responding here will check out your other posts and the additional information you've provided in that other thread.

Topic: Risk Assessment Appointment to discuss results

To your request in the other thread that I share my experience with you, while I want to be helpful, my experience is completely different so it's more likely to take you off track than help you. I've been seeing breast surgeons for years but always because I've had a breast issue (I had my first breast biopsy at the age of 16), never just for a risk assessment. My risk discussions have taken place with my Medical Oncologist and my genetic counsellor. So I have no idea what will happen at your appointment. It actually wouldn't occur to me to go to a breast surgeon for a risk assessment, but then I'm in Canada and in my experience, breast surgeons stick with surgery. It appears that in the U.S., breast surgeons often have broader practices.

You know, pretty much everyone here has actually had breast cancer. It's not fun, but it's not some one-size-fits-all absolute disaster for everyone. You seem to assume a lot of worst-case scenarios all at one time.

"Anyways, I'm still very confused by all the percentages and uncertainties of this. How accurate are all these numbers anyway?"

For large populations, these numbers might be quite accurate. For any one individual, they don't mean much. It's binary. Either you will develop breast cancer or you won't. If your risk is 5%, that's pretty darn low, but there will be 5 people who are the unlucky 5 out of 100 who do develop breast cancer, despite the low risk. And if your risk is 75%, that's awfully high, but there will be 25 lucky people out of 100 who never develop breast cancer, despite such high odds. On this site we occasionally see women come through with a BIRADs 5 assessment on their imaging. This means that there is a 95% chance that they have cancer. Yet over the years I've seen lots of BIRADs 5 women end up with benign biopsies.

Where these numbers can be helpful is in deciding what to do about one's risk. 1 in 8 women will be diagnosed with breast cancer. This means that the "average" woman has a 12.5% chance of being diagnosed over her lifetime. The average woman gets screening mammograms and that's about it. On the other hand, someone who has a BRCA mutation may have a 70% chance of developing breast cancer over her lifetime. Many patients who are BRCA positive choose to have prophylactic bilateral mastectomies. As you noted, 20% (or sometimes 25%) is considered "high risk". At that entry level into the high risk category, the recommendation is usually enhanced screening (often adding an annual or biannual MRI) and sometimes Tamoxifen. While risk models cannot tell you whether or not you will develop breast cancer, they do provide a risk categorization that can help a patient and her doctors make appropriate decisions for screening and preventative treatment, by applying a risk vs. benefit approach.

A 19% risk? 50% higher than average, which in the breast cancer world would be equivalent to a having a low risk factor. It's lower than most who have high risk conditions such as ADH, ALH, LCIS, lower than most who genetic mutations, and lower than the risk many of us face to be diagnosed a second time (we are all higher risk than the average woman to develop a new breast cancer because we've been diagnosed one time already). That's not to downplay your risk - and I appreciate that your family history would seem to suggest a risk that is potentially higher than 19% - but to offer perspective. And it helps explain why insurance companies and the medical community (and some people here, since most of us are or were higher risk than you) are not in the same place you are in terms of what to do about your breast cancer risk.

Some people want advice, some people want to vent, some want enabling, some want drama. It's hard to tell from one or two posts.

Good grief. I guess she's answer-shopping until she gets the one that agrees with whatever she wants.

Onthinice,

I've been here a long time. I decided years ago that in most cases, even if someone is asking, "what would you do?" or "what do you think I should do?", I won't directly answer the question. Instead, I try to offer advice and provide information that helps the individual make their own decision, the decision that is best for them. I may tell them what factors I considered in my decision, but I won't say what I would do in their shoes. What I learned after being here a while is that the decisions that are right for me might be completely wrong for someone else. I've seen people make decisions for themselves that I never in a million years would make for myself. I've also seen too many people who were pressured by family or friends into making a decision that they weren't completely comfortable with, and then greatly regretting it later. So I hope that in my responses I can help someone understand the pros and cons of their choices and maybe offer some perspective to help frame the decision, but I won't give my opinion on what someone else should do. My opinion on what you should do is completely irrelevant. And my choice of what I would do in your situation might be a choice that would make you very unhappy.

I do sometimes make exceptions to my rule because in some cases the downside of not doing something is so severe. For example, if someone doesn't want to have a biopsy but really needs to have a biopsy, I'll say "well, I would have the biopsy in your situation". But most cases aren't that clear. The situation you face certainly isn't. I completely understand your fears, and I understand your dilemma, given your family history vs. the 19% risk that's been assessed. I honestly don't know what you should do.

I am sorry that you received some replies that read to be insensitive. I don't think they were meant to be. I know mine were not meant to be. I think some of it comes from the fact that you are reading type on a page, and the subtleties of conversation are missing. The other factor, frankly, is that a lot of newbies come through this board, but unfortunately there are only a handful of people on the site who answer newbie posts. So sometimes the answers are written too quickly and sometimes the answer reflects more than what the writer is seeing in your post alone.

I hope you are able to come to a decision that you are comfortable with, and I wish you well in the future.

Edited to add: This post was in response to a post from Onthinice in which she criticized those of us who had not directly answered her question when she asked for opinions on what she should do (and she did thank moth for providing her answer). Since Onthinice subsequently asked the Mods to delete her account, that post, and all her posts, have been deleted without any evidence that there ever were posts from her within this thread (separate from the opening post) that the rest of us were responding to. There needs to be a better way to handle situations where members choose to delete their accounts.