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Topic: How to be preapproved for prophylactic breast surgery

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

Posted on: Sep 22, 2020 06:22AM - edited Nov 19, 2020 11:39AM by

Deleted Member wrote:

This Post was deleted by Onthinice1.
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Sep 22, 2020 06:46AM MelissaDallas wrote:

Could you please pick one thread and stick to it? It is very difficult for us to respond to you thoughtfully and meaningfully when you keep starting multiple threads

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Sep 22, 2020 09:52AM Beesie wrote:

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 22, 2020 02:35PM Beesie wrote:

Onthinice, everyone has to deal with their own stuff. Some things we handle well, other things throw us for a loop. Don't compare yourself to others and don't feel ashamed about having anxiety over your concerns when you see others with what appear to be bigger problems. Lots of women in your family, including your mother, have had breast cancer. You are thinking about your risk and just starting the process of investigating what your risk is and what options you have to manage/reduce your risk. Seems pretty normal that this might cause anxiety.

But you do need to be careful to not jump to conclusions based on assumptions. You haven't talked to a single breast specialist or genetic counsellor yet about your risk, and yet here you are asking about a PBMX, the most drastic of all risk reduction options. Slow down and take it one step at a time. As you have these upcoming discussions, it may become very obvious to you what you should do... or maybe it won't. Whatever you do will be life-impacting, and you shouldn't be making such a major decision based on speculation and a few incomplete google searches (or even a lot of google searches). You've concluded, with no discussion with an doctor, that Tamoxifen won't reduce your risk enough, that you can't take an AI because of osteoporosis, that a PBMX is the best option for you but that insurance is likely to deny it for any number of reasons. I could (and in my post in your other thread, to some extent I did) refute all those points.

As for the PBMX, maybe after all the discussions you decide that your risk is high enough to warrant this surgery - but you need to fully understand what you are getting into. A PBMX is major surgery that will impact you for the rest of your life. The surgery usually goes well but there can be complications and some women experience long term side effects. That's not to scare you but to ensure you look at this fully, realistically and honestly. As with monitoring, Tamoxifen, and AIs, there are both risks and benefits associated with having a PBMX. There is a reason why doctors don't recommend this surgery unless a patient is high risk.

You've mentioned a few times that part of your concern is driven by your breast density. Do you know if you have extremely dense breast tissue or heterogeneously dense breast tissue? Because at your age, it's actually pretty normal to have high breast density. Breast density usually starts to decline once a woman enters menopause, but in your case, since you've been on HRT since you entered menopause, I think it would be expected that this natural reduction in breast density would not have started yet. So your breast density might be more equivalent to someone in her 40s, because you've maintained your estrogen at this level.




As for me, my first breast biopsy, at 16, was 48 years ago and I've had 6 more breast biopsies since, along with more fine needle aspirations than I can remember and several other biopsies (other body parts). And I've had breast cancer. So I'm pretty good at dealing with this stuff. It's given me a good education about the diagnostic process!

I hope your appointment goes well and I'm interested to hear what happens.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 17, 2020 12:07PM AliceBastable wrote:

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 17, 2020 12:27PM moth wrote:

"Looking for opinions on what you would do" - Honestly, I'd move on. You have done more than due diligence and received a professional, evidence based risk assessment which states that your risk is not high.

I think at this point, the prudent thing to do would be to maintain a normal BMI, get the recommended daily exercise, maintain healthy levels of blood lipids and blood pressure, have regular check ups with a PCP, go for whatever screenings they recommend and let this go.

I interpret your results as saying that the leading causes of death (heart disease; lung cancer - which kills more women than all gyne+ breast combined and ~15% are never smokers; complications of type 2 diabetes, and right now COVID) are statistically more likely to be causes of a reduced lifespan for you than breast cancer. There are no guarantees but I think you've done what you can.

best wishes


Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3 Radiation Therapy 3/3/2021 External: Bone
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Nov 17, 2020 02:26PM Beesie wrote:

"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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 18, 2020 11:18AM Beesie wrote:

I was looking to see if Onthinice had responded the feedback provided in response to her question about what to do now, and came here to find that she has deleted all her posts in this thread. Unfortunately it appears that Onthinice was not pleased with the opinions provided.

This has happened with a few members recently, and it makes me wonder why any of us spend the time trying to provide thoughtful and relevant answers.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 18, 2020 12:36PM AliceBastable wrote:

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 18, 2020 12:45PM - edited Nov 18, 2020 12:46PM by MinusTwo

Looks like she's still asking questions on at least FIVE other threads. Grrr.

Thanks to you ladies for always trying.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 18, 2020 12:51PM AliceBastable wrote:

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

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 18, 2020 01:51PM Beesie wrote:

Minus, it looks like those are older threads. I feel bad.... with a strong family history, I appreciate why OnthinIce is concerned about breast cancer. But it does appear that she was looking for agreement with the conclusions she'd already come to rather than the opinions that she said she was asking for.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 19, 2020 07:23AM - edited Nov 19, 2020 03:21PM by Beesie

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Nov 19, 2020 06:57PM MinusTwo wrote:

Thanks for your edited comment Bessie. Yup, when someone complete wants there presence deleted, it makes it hard for future new members who select a thread to figure out what is going on.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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