Just starting the process

Beach32 - so sorry you are having to make these choices. Genetic disposition towards cancer sucks, I know. I had my BMX due to my BRCA gene. Cancer was on one side and needed that breast removed, BRCA + results made me choose to remove both as well as my ovaries and Fallopian tubes at the same time.



Even though I had radiation, I chose to reconstruct with implants, even though many surgeons will not do implants if you have had radiation. I have degenerative disc disease, which is why I have a plate and screws in my neck, and arthritis in my lower back. I knew I did not want to cut any more body parts that could potentially cause me more problems. So far I am happy with my results, though I was able to stay the same breast size approximately.



Even though you do not have a genetic mutation that is identified, be sure to check out www.facingourrisk.org. I think you will find much helpful information and resources on their site. Hugs as you face these new difficult decisions!

I can relate to how scary this is for you! I have a strong family history (of premenopausal breast cancer, some colon cancer, etc) as well and a "high risk assessment" that puts me at 3-4x lifetime risk. No known mutation. You are fortunate in that you have been able to get the high risk screening, as I am still fighting to get that where I live (I can get mammograms no problem but MRI's are a tougher issue and so I have not had any yet...and I do not trust the mammograms at all with my breast density or the experiences of my family members). I have dealt with more than one dismissive medical provider here, even at the breast health clinic, and am finally trying to get into another city's high risk clinic. It is a couple hours away but better than butting my head against a brick wall here!

I also have dense and large breasts, plus fibrocystic breast condition which makes self-exam difficult. I have a lot of anxiety around detection as my own mother's cancer was lobular and thus very hard to detect despite vigilance and screening. Mammograms, and self-exams, and clinical exams all missed it until it was Stage 3 and there were 19+ nodes, etc.  So, I know prophylactic mastectomy is a good option for me. After seeing what my family members have gone through (and most losing the fight with breast cancer despite aggressive treatment), counting on catching it early and depending on it being "curable" is just not a risk I really want to take. Like you I do have additional considerations. My husband is awesome and very supportive, but we don't live anywhere near other family, I am the main breadwinner, and the location I live in leaves me a bit worried about what kind of care I would receive if I needed cancer treatments and whether I would need to travel. So yes, going through chemo and such would be a concern. I also have serious lifestyle concerns (after watching my mother) were I to get lymphedema, etc. And of course, there are no guarantees even early diagnosis will mean I survive it. 

I am still having difficulty getting someone to take me seriously about my desire to discuss a prophylactic mx. I am also still a little stuck on what I would want for reconstruction in any event and still not 100% "there" to get surgery yet for various reasons like losing sensation, length of recovery, risk of complications, etc. I know for my my preference is one-step implants, or actually even going flat but I am not sure I am ready for that quite yet! I know looking at the reconstruction options there are negative aspects to each that concern me and so I still need some time. Lots of people do seem to go for DIEP but I neither have much "fatty tissue" to donate and I really, really do not like idea of touching my stomach and creating more scars or potential complications. This may be influenced by my mother's complications from DIEP and fact I am a very active and athletic person and it makes me nervous to touch my core even if the muscle remains. Then again, they need to cut pectoral muscle during implants which makes me just as nervous given my lifestyle/athletic pursuits! This is why I think of going flat though I am still not sure.

You may want to look at the FORCE (Facing Our Risk Empowered) site, which is good for exploring your surgical options. The message boards there are very helpful for those with genetic/hereditary breast/ovarian cancer risk who are considering the various options for preventative surgery, with lots of people sharing their experience and journey in detail, so I do recommend it but be aware it is pretty "pro surgery" and many of the women and men there are dealing with BRCA mutations rather than family history alone (though there are a few!). They have a photo database to to look at the different options.

You may want to look at getting The Breast Reconstruction Handbook (http://www.amazon.com/Breast-Reconstruction-Guidebook-Research-Recovery/dp/1421407205/ref=sr_1_2?s=books&ie=UTF8&qid=1379365396&sr=1-2&keywords=breast+reconstruction+handbook). It explores surgery and reconstruction options in great detail and I see it referred many times over!

Have you also talked about chemoprevention with your doctor and/or counselor? Some women choose that route either combined with screening or with surgery. There is nothing wrong with not choosing surgery and many women aren't ready for that as a preventative. Which is fine, but make sure to keep up the screening! Note, you also do have option of removing your ovaries to reduce risk by hormonal influences and not removing breasts, though your risk reduction might not be as drastic as it would be with PBMX (remember a mastectomy won't take you down to 0% risk either).

I don't think that was very helpful and was a bit rambly, but I just wanted to say I can really, really understand how confused you are right now! I am sure I would have been far more decisive, and had easier access to high risk care, if I had been confirmed BRCA +, and I feel a bit in limbo being an uninformed negative.

ETA: You may want to check out this book too! It is very good! http://www.amazon.com/Confronting-Hereditary-Breast-Ovarian-Cancer/dp/1421404087/ref=pd_sim_b_1

Hello Beach32.  I'm sorry that you are going through this.  I know how it feels to have to make a decision like that.  I am in a similar boat as you.  I am 38 with heterogeneously dense breast (bilateral).  I have had two lumpectomies this year.  Only diagnosis I have so far is Atypical Ductal Hyperplasia (both breast).  I have a family history of premenopausal BC (two aunts and a cousin) (my father's sisters and niece).  I had genetic testing with results of bcra1 negative and bcra2 vus (variant of uncertain significance).  I have numerous nodules that have not been tested.  The last surgeon i went to (this passed wednesday) confirmed what the other two surgeons before him suggested (that if i were to get the remaining nodules biopsied, i would have to have a bilateral mastectomy).  Again, i went to two different surgeons prior to this one because i was in denial and kept wanting to get different opinions until i heard "no, you are good, we can go in and get those checked out individually like we did for the lumpectomies" but this wasn't happening.  I am scheduled to see the plastic surgeon next week, there he will discuss the options i have.  once that's decided, i call the surgeon to schedule the surgery.  I however will chose the implant route for reconstruction, the type of material, i haven't decided yet.  Please research and read up on all of your options and whenever you have a question, ASK!  do not hold it in like i did.  I've learned how to ask ask ask ask and read read read read up on topics

You should feel comfort in knowing that you are not alone and from my experience with this board, the members are knowledgeable and extremely helpful. Only you can make your final decision on your health and you are being very proactive and that is wonderful. Good luck to you and keep us all posted.