y do they think this is the wrong thing to do?

Stacy-

Calm down. You know there is a history of cancer in your family. So I suggest that you eat healthy, maintain a healthy weight, exercise, check out nutrition books about foods that specifically fight cancer and do self breast exams.

I know that you are scared but it is very emotional to lose your breasts. I am finding that my joy and happiness is seriously affected by the loss of my breasts.

I think your doctors are right. Please don't consider this surgery at this time. I am afraid that you will regret it deeply.

Good luck to you.

Stacy, I'm a little more inclined towards your opinion than baywatcher's.  Perhaps an intermediate step that would satisfy you and your doctors is to ask for genetic testing for the BRCA1 and BRCA2 genes (and maybe other breast-cancer related genes like "p53 mutation")? 

I don't know how commonly such testing is done in the UK -- but it seems to me that if you were found to have genes that are known risks for breast, doctors would listen very differently to your interest in prophylactic bilateral mastectomy.  And if you were found NOT to have versions of genes that are known to be related to breast cancer, then you might find that some of your fears are eased. 

I don't want to intensify your fears, or fan any flames here -- but I don't want to be falsely reassuring, either.  It's great to eat right, exercise, watch your weight -- but there are lots and lots of women on this board who have done exactly that yet developed breast cancer.

To me, the logical first step would be genetic testing, and I hope you can get it.

If you already KNOW your genetic information, or know that your mother had BRCA1 or BRCA2 -- then I think your doctors are being really dismissive.

Maybe some women on this board who have had PBM will chime in -- I think most do NOT regret it. You might also find some helpful info on this website that is specifically for women with a family history of breast and ovarian cancer: http://www.facingourrisk.org/

Wishing you the best,

Ann

All of the above is important information INCLUDING the psychological issues of loosing ones breasts - you think it will solve the problem when in fact it may ADD to your anxiety...  So it's good you are seeing a psychologists!   I think everyone considering the removal of her/his breasts should see a therapist to talk it thorughl..

You should have a BRCA test and your insurance should cover it because you are "higher risk".  Also, you need to have a breast MRI and that could relieve some of your tension while you wait.. Let me say that I had a mammo, digital mammo a sonagram and all were negative but the breast MRI showed an "area of concern" that took me on to a biopsy..  Breast MRI's and BRCA genetic testing is the way you can decide the need for a bi-lateral mx or just "watchful waiting"..  Your PCP can set you up with a genetic counselor and with your family history should have not problem doing that and that should be your first step..  (Insurance will pay if you state that you are "higher risk" and allow your genetic counselor to tackle them)..  Your psychologist will not see a problem because you are being proactive but not rash..  Keep talking to your psychologist thorughout the entire process.. a BRAC is just a blood test but it is expensive so you need the support of a genetic counselor first.  Good Luck and there is one more rule you should bring up with your doc's - it is routine for breast surgeons to suggest that anyone with a strong family history should start routine and advanced testing 10 years before the onset of the other family memebers so in your case time wise you are right on target for testing...!!!!

I agree with LissaAlissa post for genetic counseling as you certainly have a strong family hx.  Also, even if you should test negative for BRCA the issues may still be genetic and those tests are not yet available.  Your doctors should be screening you at your young age because of your strong family hx.  Be proactive and dont' back down for your peace of mind.  Eating healthy and exercise certainly helps but if it is genetic the stakes are tipped against you. Insist the doctors do their jobs and look out for you.  I am disappointed the female psychologist isn't listening to your fears.  Maybe remind her that people die from this disease and it is not so easy going through surgery, chemo, radiation, more......

If your blood sample should test positive for BRCA why do you still need your mother to be tested? 

Stacey:  The BRCA testing (blood test) will tell YOU if you have the gene, it would be helpful if you mom did the test and you could potentially avoid the test yourself but since she won't you can still be tested for your own results..  They like to test the person with breast cancer first, but they don't have to.. they only need the information from the family history - that would be helpful for your mom to fill in the blanks about other family cancers, but you already are high risk and a BRCA is available to you without the need to include you mom..  Good luck...  If you can get info on your family your genetic counselor can create a "map" of family risk and that really can help you with your decisions...

http://www.onmedica.com/NewsArticle.aspx?id=b17dea0f-bee9-4e72-ab00-f4311afd3efd

Stacey - I am sorry for your worries,  I do suggest as others have that you get the BRAC test and also the p53 mutation if possible in the UK. 

I choose to believe your doctors are looking out for your best intrest both physical and mental.  I have been both routes over the past 3 years first lumpectomy and treatment and this past Oct (by choice - because of ongoing issues) Bilateral MX (with no reconstruction) while I knwe this was the best thing for me to choose and I had come to terms with my decison "IT WAS RIGHT" it was no easy decision, and it has not come without emotional baggage along the way -  even yet today from time to time the sadness of being BREASTLESS still hits me.  Yes I could attempt to reconstruct, however I will not I have had radation and fear the complications would be to many.

You are 20 years old Stacy with a big family history so I completely understand your thinking as far as prevention, but please please do realize,  that the decision to have a MX does not mean you will NEVER fear BC again,  your body will be changed forever if you choose the surgery, and if it is the "RIGHT DECISION" for you then you will do well with it,  but sweetheart understand there will still be days when you might look at your body and cry.

I hope this makes sense, you must make a choice you can live with forever and I wish you the best, take your time, think everything through.

Much Love - Cathi

Stacey-you do have time on your side. I appreciate that you have been worried for a long time, and feel that this would give you peace of mind. Granted having bilateral mastectomies would reduce your risk-but it doesn't remove the risk entirely. It's impossible to remove all the tissue, so it could still happen, even after surgery. Granted, the risk will be much smaller, but please don't think that surgery  would be a guarantee.

I think if you persevere, you will convince them-it's just the way the system works in this country! (I'm in Devon-where are you?) In fairness they have to be very, very sure that the decision is the right one for you. If you can remain calm and focused, presenting the same arguments, then they will likley agree. If you have the genetic test done, and if it's positive, you will be able to enlist the help of  a genetic consultant, and that would possibly be enough to tip the balance.

I think in fairness to the drs, they are probably not dismissing you as reacting on a whim-it's a huge decision to be made at any age. You're in a very vulnerable place at the moment, and with no evidence of a genetic misprint, and no family support, I feel they are trying to protect you rather than putting obstacles in your way. If you want to pm me to chat further, then please don't hesitate. Wishing you well, xx

I don't know if you can do this outside the US or not, but I got my test for free because I'm poor. It's usually @ $2,000.00-$3,000.00. The only company that does it is in Salt Lake City, Utah. I believe their name is Myriad. Their phone number is 1-800-469-7423

I am new to this discussion board.  I am 47 years old and had a prophylactic bilateral mastectomy on 4-23-09.  My decision to do this was reached due to the following:  My mom had breast cancer at age 32 and two of her sisters have had bc.  Since 2004, I have had multiple biopsies and tests (mammograms, ultrasounds, and MRIs) none of which ever give reassuring results...always suspicions loom, biopsies are ordered again and again.  It seemed I was being taken apart piece by piece anyway.  The last straw (leading up to my decision) was a recommendation (following MRI) for excisional biopsy on three suspicious areas in April, 09.  I was facing surgery anyway and sick of the anxiety surrounding constant scares.  Also, from info reported by radiologists, I felt like on other areas (that weren't being biopsied), a wait and see approach was being used...something I wasn't comfortable with given family hx.

I was willing to be extra vigilant and by stepping up the surveillance if that route would have worked for me but because of the density of the breast tissue, there was so much that could not be seen...I feared a cancer could easily be missed.  The three areas to be excised were rock hard and not movable...the kind of lumps they always tell you to fear most.  I felt like I was sitting around waiting for cancer to happen and chose to be proactive (with full support and encouragement, in fact, by my surgeon who had been following me since 2004).  My mom was tested for BRCA 1 and 2 genes and was neg, but my surgeon said family hx is still significant despite her neg result...those are only two genes associated with inherited breast cancer...there are more unidentified genes.

Stacy--you are young to want this, but I also understand how you feel.  Do regular self-breast exams see a surgeon regularly who will understand and follow your case and yes, do get the BRCA gene testing done.  But perhaps give yourself more time to make such a big decision.  I know this decision was right for me and do not believe I will regret it (although it is hard for me to make this statement now seeing how I am experiencing chronic post op nerve pain).  By the way, my path report was clean so this did end up truly being preventative surgery, but the result could have been different.  I am so grateful.  Before the surgery, I told myself that having the bilateral mast was what I would want whether the path report was good or bad.  If I can just become myself again (am going through reconstruction), I know I will rejoice and know it was right for me.  You are not crazy or wrong to worry...(I think you are smart to be thinking about this, given your family hx!)...just don't be hasty, as you are very young.   

Good luck.