High risk but doctors won't perform a BMX

j2kbbax · May 2012

I was diagnosed with ADH in Sept 2011 @35 years old. My mom found her first lump at the same age and then at age 40 ended up having BC...she then had a mastectomy. When I first learned of my ADH I wanted a mastectomy...I didn't want to deal with this the rest of my life. Because of my family history my oncologist said I will have to have a mammo every 6 months and a MRI once a year. I told them I didn't want that but they refused to do the mastectomy. So in March 2012 I had my first breast MRI which once again found a lump. (which is was I feared would happen) I had a biopsy and they found complex fibroadenoma with adenosis. Both this and ADH increase my already high risk due to my moms history. So I met with the surgeon yet again and requested a mastectomy. He said that is not necessary and he doesn't think this lump even needs to be removed. He says I need to have a psychological evaluation. Both the oncologist and the radiologist agree that the lump needs to be removed. I am done having children and my husband supports my decision. I don't know what to do to get my surgeon to respect my decision. Oh and my husband is in the military so my ability to just get a different doctor is pretty much non-existent because we are seen at the hospital on our base. I don't know what else to do! I have done a lot of research and found plenty to support my decision...any other ideas?

Thanks for your response.

GrandmaV · May 2012

It sounds like your surgeon hasn't kept up with new information and thought. Is there any way to get your other doctors to recommend to the surgeon to have a mastectomy? Also, you seem well informed, maybe you could take copies of clinical studies and such to the surgeon, showing him what the recommendation is in your case. I hope you get this resolved soon, for your own piece of mind.

momof3boys · May 2012

It could be that since you do not have cancer, your insurance is denying your request for mastectomy? I think I'd ask the Dr about that...

Have you had genetic testing done?

j2kbbax · May 2012

My insurance does cover mastectomies for high risk patients as well as reconstruction. My oncologist keep putting of the genetic testing. He really wants my mom to get tested first. We are waiting another 4-6 weeks to try to get my mom tested. If no luck by then he will go ahead with testing me. The reasoning behind this is difficult to understand so I don't think I can explain it lol.

j2kbbax · May 2012

GrandmaV

Thanks for your post! I am in the process of printing the clinical studies etc.to take with me when I go see the patient advocate. I am very well unformed. I have spent many hours looking for accurate information regarding my situation. I want to be sure I am making an informed decision not an emotional reaction.

GrandmaV · May 2012

Only a male surgeon would tell you to get a psychological evaluation. A Woman would understand your thinking. It seems to me that you are doing all the right things in trying to be as well informed as you can. Keep in mind that you have time. It is hard to seperate our emotions at times from what is the educated thing to do. But also you (not the surgeon) should have the choice in your treatment. Lots of hugs.

CLC · May 2012

Is there really no way to get a different doctor? It seems that at the very least, you could get the opinion of another doctor that could be used to get your surgeon to rethink it. Also, it seems to me that this might not be the best surgeon to go with, even if you could convince him to move on it, since he doesn't seem to respect you or your ability to make decisions for yourself.

You could also consider the counseling. The counselor can verify to the doctor that you are perfectly sane and are making decisions in your own best interest. I know someone who had to do that to have a pmx in the non-affected breast. The surgeon had actually said, if you want me to remove both breasts rather than just the one, you will need to sit with a therapist first. She did and he did the surgery. That was 6 years ago.

I think that is all I've got.

I personally completely understand your feelings on this. I was on the 6 month merry go round of tests and excisions for a mere year and a half. When told I needed the biopsy in Sept. 2011, I thought I might consider a pmx even if there was no cancer. As it happened, I didn't have to face that choice because that time around, they found dcis. In my case, I only had a umx because all of the issues that ever happened, always happened in my left breast. If I had decided I wanted both off then, I probably would have had a similar battle, since that surgeon I was talking about above was also my surgeon.

I wish you lots and lots of luck with this. Hang in there...and don't give up. Listen to your gut. You are the one that has to live with the choices. You should get to make them.

Best of luck.

Claire

mrsnjband · May 2012

I think I would find a different doctor and keep looking until you find one who will do what you want. I know some doctors don't want to do BMX if you only have cancer one side. My doctor said it was my decision & she would do what ever I wanted. I know I didn't want to have to go through treatment again if I could prevent it. In your case, you could prevent the disease all together with the BMX. I hope that you can find some one to help. NJ

LISAMG · May 2012

I would strongly suggest genetic counseling/testing for your Mom, since she has already been affected by BC and she is the one to get tested. If positive, u have a 50% chance of carrying the mutation as well. One step at a time, gather all the facts and then proceed. If your mom were to test negative, perhaps her BC was sporadic, unless u have more family history with 2 or more members being affected. good luck!

Snobird · May 2012

Luckily time is on your side. You need to take a copy of the federal law concerning Breast Cancer to your Dr. Go see the therapist it won't hurt and may help you get the surgery you need. The surgeon could just be covering his ass by requesting the therapy. Go to your legal aide and figure out you're legal options. Request a referral to another surgeon for a second opinion.

Testing your mom is the preferred method but it also doesn't preclude your paternal. It is a very expensive test. The test is typically not covered by insurance. Not sure how it works with the military. Persevere.

Anonymous · May 2012

Is there only 1 surgeon on base?

girlguru · May 2012

Are you insured? I'm under 30 and my surgeon has discussed prophylactic mastectomy with me. It doesn't sound like she wants me to do that but she's at least discussing it with me as a possibility. I'm pretty sure most insurance companies will cover this procedure for high risk women. In your case, you should qualify since your mother had this disease. It's a big decision and it sounds like you've given it some thought. It does seem like surgery is a small price to pay to ease your mind about breast cancer... but not if insurance won't cover it. Find a new doctor if this one won't help you. Breast specialists are preferrable to general doctors on this issue.

Good luck and I'm sorry your request is being ignored!

High risk but doctors won't perform a BMX

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