prophylactic mastectomy - documentation needed?

Hello ! I look forward to a answer with you I am in the same exact boat! Good luck

To add to what Beesie has said, the majority of young women do have dense breasts (I do too! As well as very painful fibrocystic breasts that make sure I am ALWAYS aware they are there, ha). Have you discussed with your medical providers the possibility of adding annual MRI breast screening to your annual mammograms? They do end up returning more "false positives" as they are so much more sensitive, but they are much better for screening dense breasts than mammograms are.

I also agree with her about seeing a genetic counselor, if you have not already done so. They are best to actually go over YOUR actual risk and provide you different options for prevention and/or early detection if your risk assessment does put you into a high risk category. They may also have recommendations for testing.

As Beesie said, PBMX may be the right decision for you in the end, but do go in very eyes open. I am not much older than you, high risk, and after years of consideration and many discussions with genetic counselors and other medical providers, am in early stages of planning my PBMX with my surgeons, but I am also going ahead with very open eyes to the complications and realities of this surgery. I am definitely not doing this because of density, or fibrocystic condition, but truly my high risk and family history. Some do have very few complications, but you still will be dealing with lost sensation, a potentially long recovery, and so forth. Others do have more serious complications...like failed flaps or implants, necrosis, chronic pain, infection, and so on. I have seen a few young and healthy women getting prophylactic mastectomies for high risk/BRCA+ who have had pretty serious complications, so being young and healthy does not give us a pass from those!

I would call your insurer to ask them exactly what they need. They will be the one doing the approval and are best to advise what they in particular need (it may vary from insurer to insurer anyway). I am in Canada so no insurance issues to deal with or real "approval" system. Basically I just had to have my risk assessment, which puts me into the high risk clinical guidelines that include prophylactic mastectomy, and my surgeon be on board.

Sophie, your genetic testing will only really be meaningful if someone in your family who has had breast cancer is also tested.

The question is whether there is an identifiable genetic cause for all the breast cancer in your family, and if so, whether you have that same genetic mutation. If it is known that a particular genetic mutation is causing the cancer in your family and if you don't have that mutation, that will be a true negative and you will know that you are average risk and not high risk.

However if you test negative for all the known mutations without knowing if any of these mutations are in your family, that will be an "uninformed negative" and it really won't tell you whether you are high risk or average risk. It could be that a yet-to-be discovered mutation is what's causing all the cancer in your family and in that case, there is no way to know if you have that mutation or not. So without knowing whether or not a known mutation is causing the cancer in your family, there much less value in your results.

The exception of course is if you test positive, in which case you will know that you are high risk. But given that you don't have any first degree relatives with breast cancer, your likelihood of testing positive is probably less than 25%. Even if you knew that your mother had a known mutation, your risk would only be 50% because this is a gene that we inherit either from our mother or our father. So your mother having the mutation only gives you a 50% chance of having it too. Knowing that a grandmother or aunt has the mutation would put your risk at about 25%. And not knowing whether they do or not would lower your likelihood of testing positive even more.

Hi, sohie0,

I just had a PBMX in August of this year. I got one bad mammogram, and then another. I was then told to go see a surgeon and because he didn't like the look of the microcalcifications that had shown up in the mamogram, he sent me for a needle biopsy where they found DCIS. I then had a left breast excision during which they found LCIS. As I've had a severe case of fibrocystic breast disease in both breasts for over twenty years, that was also a consideration. And when I revealed that aside from a family history of breast cancer - mother, grandmother, aunts, cousins, both sides of the family - my mother had taken a drug called diethylstilbestrol during her pregnancy while carrying me. So having not one but four different high risk conditions put me on the fast track to a PBMX and I had mine just three weeks after the excision. I never had to provide anything to the insurance company as my surgeon submitted all the documentation. And after all is said and done, we all have to live with our decisions and I can honestly say that I made the right one for me - I'd do it again in a heart beat. I hope that helps you a little...

I did not have to supply any thing like that...I have it in most of my medical records that my mother and sisters and many other relatives died of breast cancer and various other cancers, and that was good enough for my insurance company...I did not have to do brca testing either. I had a couple lumps removed on a previous insurance and i still had a small scar,,,did not even have to get those records either...Good luck to you.