Considering Bilateral Mastectomy - Advice Gratefully Received

frillsandpills

Hi!

I am 28 years old and am seriously considering having a prophylactic bilateral mastectomy.

My mum has secondary breast cancer and her sister has just been diagnosed with the same. They are both terminal and their mum died of breast cancer when she was in her 40s.

I don't want to go through that, nor do I want my husband and children to go through it. I am currently 15 weeks pregnant with my final pregnancy, so would not look at this until the 2018/2019, but I want to get all my facts together. My husband, family and friends are supportive of me doing this, but I don't really know where to begin.

Any help and advice from those who have had this surgery for similar reasons would be gratefully received.

Thank you.

MrsGreenJeans

frills, I had PBMX, but I am in a much different scenario than you. I'm 52, have had multiple breast biopsies over the last 30 years, was diagnosed with LCIS with the most recent, and my sister had BC at age 43. I also had very dense breast tissue which made it difficult to detect lesions on mammography. I could have gone with ramped up surveillance or that plus tamoxifen, but I wasn't comfortable with either of those options. I haven't gotten my pathology results yet, so have no idea if they found anything worse in there.

Have you been getting mammograms, or ever had issues with your breasts? If so, that should help in coming to a decision. Have you considered being tested for genetic mutations? Your family history is scary, I would be very concerned as well.

Mastectomy is a major surgery. Some people fly through it relatively well, others have severe complications and years of dealing with it. Unfortunately, we never know where we will fall within that range.

Hopefully others will come along to offer some advice or suggestions. I wish you well as you try to figure out what is best for you. Be thankful that you have a supportive family. Fortunately you are very young, and have time to make a decision.

BethL

have you seen genetics for testing yet? While it appears there's a strong chance your family has genetic risk for breast cancer, it doesn't mean you have it. Because of your family history, insurance may cover some of the cost. You need more information, but it's good you're being cautious. If you do turn out to be at higher risk, it's good you're educating yourself now.

BarredOwl

Hi Frills:

Although your mom and aunt both had breast cancer, this does not mean that you will get it. For example, if there is a specific gene in your family tree that has conferred increased risk on your mother and aunt, but you did not inherit it (50% chance of not getting it), you may not even have elevated risk. Then, prophylactic mastectomy would not be indicated at all.

To find out more, I agree with the suggestions above to request a referral to a "Genetic Counselor," a professional with training in methods of assessing familial risk for breast cancer. They would work with you to collect a family history of cancer on maternal and paternal sides of your family (breast cancer, other cancers, age at onset, etc.), conduct a formal familial risk assessment, and help you to understand your overall risk in light of your family history and personal risk factors (e.g., age at first period, breast density (if known), etc).

A Genetic Counselor can also advise you about whether and what kinds of genetic testing may be recommended in light of your personal and family history, and explain the pros, cons and limitations of genetic testing. The counselor can advise you about various risk reduction options, such as enhanced screening and/or chemoprevention (e.g., tamoxifen), as well as the pros and cons of prophylactic surgeries (such as prophylactic mastectomy, bilateral salpingo oophorectomy (removal of ovaries and fallopian tubes)) and recommended timing, if these should be considered.

You may choose or decline genetic testing. If interested, please start this process, as your mom can help you with family history. In addition, if recommended and if you decide to be tested, the most informative results may result from testing both you and your mom, if she is willing (her choice).

To get some initial background:

http://www.breastcancer.org/symptoms/testing/genet...

BarredOwl