Decisions

Colleen_2

I feel like I am starting on the same roller coaster as last year.  After many mammograms, ultra sounds, MRI and 6 biopsies, I had a bit of a break.  Now, last Tues. I had my MRI and mammogram, was called back in Friday for more enhanced imaging and received a call from the hospital that I have to have a stereotactic biopsy this Friday.  I will do this one but I have to think, is it time for me to seriously start thinking about having a double mastectomy.  I have a very strong family history and with the ADH diagnoses last year, I don't know how many more biopsies I want to go through.  Also, of course, the anxiety has come back.  It was so nice to have that break from all of the testing and I thought after everything I had last year, that I could get through anything fine, but I guess the axiety has a mind of its own.  Do I just keep getting biopsies?  I know none of you can answer that.  I have to decide for myself.  If any of you have been in this position, is there anything out there that helped you make a decision?  Hugs to everyone.

edwards750

Colleen- try not to panic. I'm sure you are on anxiety overload, how could you not be but a double MX at this point is premature. Wait and c what happens with the biopsy. If everything is k talk to your dr about whether you should something now in anticipation of...tough decision. Angelina Jolie did a bit of preventive maintenance and if I was her I would have done the same thing. 

I have a family history too. Both my sister and I have BC. Our mother did too. We were not tested for the gene because frankly we did not want to live waiting for the other shoe to drop. We both were diligent about our annual mammograms. 

Let us know how the biopsy turns out. 

Diane 

Lily55

I would ask about Tamoxifen or Aromastase Inhibitors before opting for surgery............

WolfsLady

Of course it's a choice only you can make.  It's a huge surgery.  But I hear you about the constant worry and multiple biopsies.  One thing I'd want to know is how many can you have before all the scar tissue from those starts to make it too easy to miss things or just makes it so that you are going to need another biopsy every 6 months when you get scanned?  I've had 2 core biopsies (one was a 2 fer)  and an excisional biopsy.   While I am very thankful that all have been benign the excision was multiple papillomas which are considered to raise your risk of breast cancer.  I also have Aunts, cousins and a grandfather who have had breast cancer so that already had me in the higher risk group.  It's not clear if the 2 together change anything since there are limited studies on papillomas.  I'm going to assume not.    but I'm being well monitored and I'm counting on that to catch anything that might dare to grow early.  For me that's enough.    At least for now.  But I can't say that it would be if one of my sisters or brothers was diagnosed.  I would say that if it was a brother unless he carried a gene that I don't, the girls are getting upgraded for sure.  For me the best thing seems to be to have a plan for certain scenarios and to play the rest by ear.   My motto for years has been "Hope for the best - Prepare for the worst."   That doesn't mean to sit around and micro plan or assume that the worst will happen.  It just means when you are on the plane of life know where the emergency exits and flotation devices are.  Then sit back and try to enjoy the flight no matter how bumpy it gets.  If you decide that what you have might be defective and new flotation devices are going to make the flight less worrisome why shouldn't you get them?    

Colleen_2

Thank you so much guys for your input and great advice.  I will talk to my surgeon after this biopsy and see what she says.  I trust her opinion and am very lucky to have her.  I think it's the anxiety in all of this that is the worst. Thanks again and hugs.

farmerlucy

Colleen - I did the high risk screening for twenty years. All along I said if something comes up I'd have them removed. When ADH and ALH "came up" I opted for the PBMX. It is a huge surgery as WolfsLady said but doable. Not only is the high risk screening anxiety ridden it is expensive. Tamoxifen is also an excellent choice as well. Several ladies on these boards have done it and have had no further biopsies. I probably should have done that in my early forties. No choice is perfect. It sucks that you have to make one. I'm glad you are thinking about all your options and being your own best advocate. 

Colleen_2

Thank you farmerlucy. I have my follow up appointment with my surgeon July 7th so I will see what happens and will definitely talk to her about all of my options. 

FLOWERGRL

Colleen, have you been to see a genetic counselor yet?  When my sister was diagnosed with breast cancer last year, we went to one and it is SO HELPFUL to see your family history laid out, and have the expert advice of someone who is knowledgeable about risk.  Have you tested for any of the breast cancer genetic markers? I found out last summer that I had the BRCA2 mutation, and it took me a little while to come to terms with my choice, but ultimately I decided I could NOT be on the roller coaster that you are on right now, and had a preventative double mastectomy a few months ago.  My sister's cancer did NOT show up on a mammogram and grew fast, so I wasn't comfortable with the standard MRI once a year (not to mention how expensive each years testing would be).  So glad you are being proactive and I think the more info you can have, the easier it will be to decide what YOU need to do.  Good luck!!

Colleen_2

flowergrl, my sister and I have been to a genetic councilor which put us in the high risk program.  My family has been tested and we do not carry the braca gene.  They should really study my family because with our strong background they may be able to find something else.  My surgeon is the same one who did my mom's double mast. She suggested I consider it and I see her on the 7th to get my latest results.  We will go from there.  Thank you!