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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 08:22AM

Onthinice1 wrote:

I joined this forum yesterday. God bless all of you and may you find peace, love and joy each day. You all deserve it!

I am just starting my journey. I am 59 years old, have dense breast tissue and a strong family history of breast cancer, no biopsies. My questions are what documentation do you need to prove your family history. My mother and aunts and great aunt are all deceased, all diagnosed with breast cancer. All the women of this side of family were diagnosed with cancer, at an older age. Is verbal information enough for preapproval? Also, is genetic testing a necessity? What happens if you get approval for this and have no genetic history? It seems that is more often the case. Does your insurance deny the claim with no genetic mutations? Are there other factors that figure into insurance approval of this disease. I am concerned insurance may feel I am not high risk enough for this surgery, and only offer the careful watch/testing or preventive medication. I do not want those options. Do you have any say in this matter at all?

I may be jumping the gun here, because my first breast risk assessment isn't until next week. I am just trying to prepare, ease my anxiety and fears about this upcoming visit and gain valuable information for my appointment. This is all new to me and I have no clue what to expect or will be done.

Are their members who have had prophylactic breast surgery? If so, would you please share your experience and quality of life. Are you happy with the choice you have made. I am a cervical cancer survivor diagnosed in 2008. To me removing the breasts if able seems to be the best way to avoid a cancer diagnosis, with high percentage of success. I understand Tamoxifen is available, taken 5 years and provides additional support for a few additional years, but the effectiveness depends on high risk you are to begin with, along with other factors and doesn't prevent ER negative breast cancers. Also, if you are diagnosed after taking tamoxifen what options are you left with? AIs are for people who don't have osteoporosis. So this would not be an option for me. Tamoxifen may be a good option for many but I am uncertain of how effective the drug would be for me, and am very concerned about the many side effects of the drug.

Thank you for any information you have it will be greatly appreciated. Feeling very confused isolated and uncertain about all of this.

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Sep 22, 2020 08:46AM 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 09:18AM Onthinice1 wrote:

Melissa, I am very sorry. I am new to this and it was suggested by the moderators that I use this category. I didn’t realize I was upsetting anyone and apologize if I have. I’m just trying to find information and do not know how to navigate well in this forum. It is day 2 for me here.

I’m looking for information from others to gain insight and knowledge if possible. That was my main purpose for joining.

Well wishes to you.

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Sep 22, 2020 11:52AM 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 01:04PM - edited Sep 22, 2020 01:05PM by Onthinice1

Beesie, I hope I'm posting this where it should be posted! First, I can't imagine having your first breast biopsy at 16. If you care to share I would be happy to listen. You may not believe this but I actually was/ am a cervical cancer support person. If someone needs help I lend a friendly ear and provide support. It truly does seem to help. Now I am on the other end and totally lost not only in this forum but with the not knowing and lack of control and knowledge about this situation.

I called the doctors office to find out exactly what is going to take place. I will be examined have a risk assessment and then may be sent elsewhere for genetic testing.

My anxiety is totally out of control and my medical dr has referred me to someone for this. I need to get myself straightened out and feel ashamed of myself because my problems are nothingcomparable to most on this site.

Thank you Beesie. You are a kind caring lady!

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Sep 22, 2020 04:35PM 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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Sep 23, 2020 07:08AM - edited Oct 4, 2020 02:39PM by Onthinice1

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