Need Advice

milissalynn

Just needing some advice ladies. I am 33 yrs old. I recently lost my mom to metastic breast cancer that spread to her bones, liver and brain. Her cancer was er/pr+. She was tested for brca 1&2 and came back negative. Over the past year i have been having issues with breast pain and cysts. I have done mammograms since i was 27. Last year was my first time of having a ultrasound and breast mri. Which they came back normal except for having very dense breast and cysts. Yesterday i had my f/u mammogram and it showed a spot/change. So they redid pics and ultrasound. didn't get a clear enough pic so they did more pics turning my left breast this way and that way. and another ultrasound. the ultrasound found a cyst or what the radiologist said to me was "i think its a cyst". I went to see my breast health dr right after and she confirmed it was a cyst. but she was positive that it was fine and i didn't have cancer. Now i have had breast pain a lot. I can tell you where the pain is and there sure enough is a cyst. I can't get my dr to do a biopsy or to remove them. she said it wouldn't do any good. She has tried me on tamoxifen and other alternative meds to help with the pain and it hasn't helped. There is times the pain is so intense i grab myself. or it has affected the use of my arm(s). Last november she advised me to have a mastectomy w/reconstructive surgery 1) family history of cancer 2) the pain. I have been tossing this idea around for some time now. Even did a second opinion...talked with my mom's oncologist..other women and they all say i should have this done. I'm scared and i'm tired of the pain. Ladies, would you insist on having the cysts removed? and/or have the mastectomy? should i insist on having the brca1&2 testing done? please i'm confused, scared and tired. I lost my mom 3 weeks ago. I need to talk to her she was my best friend. So ladies, please tell me what you think

thegoodfight

Milissalynn,

I  am so sorry you lost your Mom at such a young age.  My oldest daughter is now  also 33 and of course that was my greatest fear when I was diagnosed two years ago.

I am not a doctor but I can tell you this.  If your mom tested negative for the brca genes, YOU CANNOT HAVE THE GENES !  So take comfort in that.  I too was tested with neg results which gave me some peace for my two daughters and my son.  Not only can they not have it if I don't but of course they also cannot pass it on to their children.  

One other thing I can share is that bc usually, and I said usually, does not have pain associated with it, at least not in early stage disease.  I had tumors growing for 7 to 10 years and never had pain.  Also note that I had over 20 years of clear, normal mammos even with it there.  I found the lump in the shower.

I also know that lots of ladies do go forward with a prophylactic double mastectomy if there is a strong family history.  You are young and this could take lots of years of worry away.  It does not completely take your risk away, but it makes it minimal.  You might want to consider the surgery.

Hopefully others will be along to share and help you through this difficult time.  My thoughts are will you.

Caren

LisaAlissa

Caren, you said that "If your mom tested negative for the brca genes, YOU CANNOT HAVE THE GENES ! "

Unfortunately, that's not exactly right.  The mutation can come from either side of the family, so knowing that her mother tested negative gives her significantly more comfort than all of those in the world who haven't had a parent tested, but doesn't assure her that she didn't inherit the gene mutation from her father.

Usually we don't focus on the "other side" of the family, since the family history that led to a concern that there could be a genetic mutation of the BRCA gene is usually on only one side of the family.  But if the children of a person who tested negative are "lucky" enough to have bad history (or no history) on the other side of the family, a genetic counselor may recommend testing for the children even though a parent has already tested negative.

When in doubt, check with a genetic counselor.

HTH,

LisaAlissa

cs34

milissalyn,

I'm sorry about your mom. It's so new for you to have to deal with this too.

The pain could be nothing and it could be something. Everyone is different. I had pain with mine and it was cancer. Again, everyone is different.
What I would like to say is that you are in the driver's seat, especially with your mom's diagnosis, so please try as hard as you can to at least make them give you every test possible.

I'm sorry, but I don't understand this, "I can't get my dr to do a biopsy or to remove them. she said it wouldn't do any good."

How could she ever say that without a biopsy? {I'm sorry if I misunderstood or if I'm being harsh--I just don't understand that.}

A little story: My friend went to a "very popular" cancer hospital in NYC and they said they weren't going to do an MRI on her "other" breast because statistically there's only 1-2% chance cancer would be in the other breast...well, she chose another hospital closer to home and they did do the MRI and as it turned out, she had cancer in both. Information is key. Must be had to make a decision.

I think if you had more testing and more definitive answers, you'd feel better about what road you want to take.

Please push for answers. You're the only one who can. Good luck!

thegoodfight

LisaAlissa,

You are right.  I guess the answer is she couldn't have gotten the gene from her mom.  For me, they felt that was enough because my children's  paternal side does not have any bc history and the family background is Irish.  My risk was family background and ashkenazi jewish heritage.

Another thing is I told my sister that I thought she should be tested because she still could have inherited the gene even though I did not.  She is actually in a preventative program done out of MSK in NYC and they have said there is no need for her to be tested.  It is all so confusing.

On another note, I asked for a breast MRI after my lumpectomy because I was concerned that there might be something lurking in the "good" breast since my history of mammos never picked up my tumor.  Well something showed up in BOTH breasts.  After biopsies the good breast was okay, but that darn bad breast had another primary in a separate quandrant.  I agree, information is key.

Caren

Anonymous

I don't think it ever hurts to get a second, third or fourth opinion.  Whichever doctor you talk to should be clearly explaining all your options and risk factors to you.  If you don't understand ask them to explain it again.  Only when you have all the facts can you possibly make any kind of decision regarding how you want to proceed with treatment.  No patient should ever be left in pain, though, with no suggestions on how to alleviate it.  

I agree with the other women that you could carry the gene from your father's side of the family so that is something to think about.

If you are considering a preventative MX please know that the techniques for these have improved drastically in the past 2-3 years.  You would more than likely be an excellent candidate for a skin-saving, nipple-saving mastectomy.  It's very important to find a surgeon who specializes in this type of MX.  The incision is usually placed below the fold of the breast, the breast tissue is replaced with either an implant or tissue from other parts of your body.  I had a NSM done in March and am very pleased with the results.  If you have any questions regarding this type of MX feel free to PM me.

I would definitely try to get to the root of the pain you are having, though, before you make any decisions regarding surgery.  Good luck to you!