Preventative Mastectomy Necessary?

NeedingHelp:  Mastectomy is a series of surgeries (not just one) that takes months to complete.  It will change your life considerable, on a variety of levels (never having had one, but knowing several women who have, I don't feel qualified to describe or explain exactly how; someone will come along that can).  It does not eliminate your chance of getting breast cancer; it is impossible to remove every speck of breast tissue and so MX is considered a risk-reducer rather than risk-eliminator.  Given what you have said here and on other threads, you are likely not considered "high risk" for breast cancer.  High risk would include first-degree relatives (mother and sister), BRCA positive, etc.  Because of this, it is possible you will not qualify for an MX, insurance may not pay for it, and I would think most surgeons would not encourage you to consider an MX without a reason for it.

That being said, let me share some loving words with you here.

You are getting ahead of yourself, and allowing yourself to get worked up over something that hasn't happened (and may never happen).  You're making a choice to continue on the path of worry and anxiety; you openly acknowledge that this is a problem for you, yet you choose to move yourself forward on the path of worry.  Coming here - to a forum with women and men who are diagnosed with breast cancer - is not helping you right now.  Yes, you read about young women getting BC and yes, some even dying - it's a breast cancer forum!! 

Instead of planning for treatment for breast cancer - which you haven't yet been told you have - perhaps your time would be better spent addressing your extreme health anxiety issues.  You say you don't want to die...but you aren't spending alot of time "living" right now, with all this worry swirling about.

*hug* to you - please, take care of your spirit while you're exploring what's going on in your body.

Prophylactic mastectomies are not even necessary for someone who is high risk, as it is personal choice. In the US, uptake for a PBMX by BRCA1/2+ women, who have an average lifetime risk of BC in the 60% range (stats range from 35-87% depending on mutation and family hx), is 1/3...so majority opt out. I am not sure what it is for other hereditary high risk women, but I would not be surprised if it was even lower.

I am going to say this gently as I can....most breast cancers are sporadic. So to get a PBMX as one family member has had BC, and in this case it sounds like an older second-degree member, is really an extreme overreaction.

80-90% of all breast cancers are sporadic. Having one family member, even two or whatever, is not automatically indicative of hereditary risk. Some factors can change this...early onset, Ashkenazi background, familial ovarian cancers...to indicate further testing might be a good idea but that your grandmother was diagnosed with BC does not make you automatically high risk. Of course, you do still have the average risk (and your true risk may be lower or higher) and so screening and avoiding certain risk factors (smoking, drinking, etc) remains important but no....I do not think a woman ought to get a PBMX if she is at average risk.

Reading this forum skews things...breast cancer in young women does happen, but it is not that common. This is the average risk broken down over a woman's lifetime, from NCI:

• Age 30 . . . . . . 0.44 percent (or 1 in 227)
• Age 40 . . . . . . 1.47 percent (or 1 in 68)
• Age 50 . . . . . . 2.38 percent (or 1 in 42)
• Age 60 . . . . . . 3.56 percent (or 1 in 28)
• Age 70 . . . . . . 3.82 percent (or 1 in 26)

These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower depending on a number of known factors (see Question 3) and on factors that are not yet fully understood. To calculate an individual woman’s estimated risk, health professionals can use the Breast Cancer Risk Assessment Tool.

Keep in mind the average also includes high risk women too, so as BRCA1 mutations can lead to early onset cancer, those women are in there too.

And no, a PBMX cannot prevent you from getting cancer despite it often being called preventative surgery. A surgeon cannot remove all breast tissue, which extends beyond your breast. It is thought to reduce your own risk by about 90%, but it does depend on the skill and caution of the surgeon, too. I do know of women who had breast cancer after a PBMX. It is also significant surgery with physical, emotional, and psychological components and with, like any surgery, risks for complications and reconstruction (if chosen) also brings with it additional surgery, potential complications, and so on.

No one WANTS cancer. 1 in 2 men and 1 in 3 women will have a cancer diagnosis in their lifetime. Some people due to family history or genetics just know where it is more likely to come from and may or may not be able to do much about it. I hate to say this, but if you were to remove your breasts when it seems you have no high risk, how are you going to feel if the cancer strikes in another location anyway?

I highly recommend you talk to someone professional about your anxiety, and you may also want to see if you can get in to see a genetic counselor to discuss your real risk, including if there is a risk due to your grandmother's cancer.

If you have concerns about your lifetime risk for cancer, a genetic counselor might be a great place to begin.  They can start by looking at your lifestyle and family history and advise you of your actual risk, which may be a lot different than what you are thinking it is.

I grew up in a family full of breast and ovarian cancers and was surprised at how low my risk even was, when you run everything through a computer model.  It still was high enough that we are going through genetic testing to get more information, but if I test negative, it isn't high enough to suggest surgeries or anything further.

When you are going through the process of diagnosing a breast condition, it is scary and it seems like breast cancer is all around you and EVERYONE is getting it.  It's also scary thinking about growing older and having screenings regularly.  However, surgery has its own risks and it's important to have all the information to weight those risks against your realistic cancer risk.  That is where a genetic counselor can be a big help.

Big hugs to you and I hope everything goes well for you and you're back to focusing on life, rather than breasts!  

Of course its not your fault that you have a lot of anxiety.  I do too.  Of course with all these things going on, you feel like everything is falling down on you. Its natural and totally OK to cry.  No one wants to have cancer.   I know you don't mean to upset anyone.  You certainly didn't upset me.  My heart goes out to you.

Sarajane,

THanks for the reminder that it's a big deal to get your breasts chopped off.

It is true however that these fibrocystic changes can make us worry but I think we need to learn to trust imaging techniques and the best surgeons. I removed my uterus because I was bleeding out of my cycle, I was thinking of removing breast, so if my brain goes funny, well do I remove it?

I think we need to be careful about treating our bodies like spare parts.

THanks all for reminding me of this

Alicki