No indication of BC...anyone else opt for PBM?

Hi, Not sure what FBD is but I see you are positive for the BRACA1 gene and on that premise, alongside the fact of your family history,  if it was me ...I would opt for surgery.  It is everyones choice though, and you have to weigh up how important it is TO YOU to do this. Some things may be harder to decide, for example, if you are very young it can be a more devastating decision than when you are lot older. In the end, its all about risk and weighing up the pro's and cons. One thing is for sure ..... IT'S ALWAYS a choice between the lesser of 2 evils.

Another thought you may want to take into account is that Mammos US's and even MRI's are not a 100% guaruntee that they pick up everything. 

HTHs and all the best with what you decide.

Musical

HI, just saw your post and agree with first post from Musical, but would also like to add that I have made my decision.  I am 30, married, have my 2 babies and am done with any more pregnancies, and have my career going (teacher so summers off).  I lost my grandmother before I ever met her (she passed at 29 from bc) and lost my mom (she was only 49 and missed her first grandbaby by 2 months).  I watched what cancer did to my mom and she was a fighter, had very aggressive breast cancer and lived with it for 11 years.  In the end I watched her live with it spreading to the rest of her body and watched her slowly suffer for the last 6 months of her life.  She was my best friend so it was the hardest thing I have ever been through.  I was tested and got positive result 4 months after she passed and am positive for BRCA2 (my sis is negative).  That was 2007, I had just had my first child and wanted one more.  So that's what we did.  I continued to meet with doctors, genetic counselors, and research on my own.   I have never had any suspicious results, no dense breasts, have had mammo and mri's since 2007 and never an issue.  I decided I would have the PBM this summer (PBM, July 1st, 2010) and 10 days out I do not regret it.  It wasn't an easy decision, but I know the alternative...  I couldn't sit around and wait to hear the words "breast cancer".  I know this surgery doesn't guarantee me not to get it, but 87% down to 3% (having ovaries out at 35 yrs old too) is pretty amazing to me.  The surgery went well and the healing continues.  I have met alot of wonderful, amazing BRCA sisters along the way and continue to learn and help others as often as I can. 

I invite you to join me on facebook on the BRCA sisterhood page if you would like.  It's a nice place to talk with others that are in your position, have had surgery, have had numerous different preventative surgeries, and are in the "all done" club.  There are just over 700 people on there.  Please check it out and add it as a place to do some more research and help you make your decision.  I have only been on the page for a couple months and have made some friends and feel the support and love that is given among other BRCA positive girls...

Hope this helps!

Jen Pezz (that's my facebook name if you want to add me, just let me know in the message that you are from here)

Cassou1 -

So sorry for your loss, it's the hardest thing to watch when a loved one has to fight through the diagnosis, treatments, and reoccurrences. 

That is great that you have no regrets from the hysterectomy, I also plan on doing that or just ovaries when I am 35.  They don't want me to do it earlier than 35 due to being thrown into menopause.

I private messaged you back, so please feel free to contact me : )

Glad to meet you and hope it helps

Valerie - did your insurance cover it? My sis tested negative, but I still worry that she has such a strong family history that she should have the right to get a PBM or at least increased surveillance.  I just wish for her to have options.

Thanks and I'm right there with ya, no regrets!!!

Jen

Thanks, yes my insurance covered it all for me (PBM and reconstruction) but I really think my sis could use extra surveillance and possible PBM if that is what she desires.  I think her and I both have such a strong fear of breast cancer that it affects our life (I feel much more positive about living without breast cancer since my surgery).  I think it was due to watching our mother go through 11 years of fighting and then us being the ones who took care of her in her last months.  That isn't easy for anyone emotionally...

Thanks for your response : )

Jen

jen--since you have already been genetically tested, the test should be much cheaper for your sister. (I may be wrong, but I think I read the first person in a family is about $3300, then subsequent family members are only $300---your sister could check with her insurance company). They certainly should pay for MRI since she is at high risk due to family history---she could get her physician to write a letter of medical necessity.  My MRIs are covered due to high risk from LCIS and family history of ILC; my oncologist has to send a letter with medical documentation. Good luck.

Anne

insurance paid for my testing-which would have been $300.,plus paid for my hysterectomy-out of pocket $1200-better than $43,000. plus my mri's, since i too have the brca1 gene

I deleted my post because I had some computer issue that caused a ton of wierd stuff to show in my post. I am going to have PBM due to strong family history of BC. I actually have a date scheduled for PBM Sept 8th.Silicone implants recon. I am cancelling! I wanted a tram or diep. 3 PS talked me out of it. Of course, they don't do them. I understand about the tram. I don't want to lose muscle. Having discovered this site, I have so much more information! I am trying to get a consult with Dr. Marga. I actually feel confident and happy. I have been crying and depressed through this whole process. I feel lifted! You are all such amazing women , thank you for sharing your experiences!

Kudos to all you heroic women. Im new to the site and new to the world of having to make dramatic breast decisions. Have had atypical lobular and ductal hyperplasia for yrs, with a partial MX on the L. Followed every 6 months alternating digital mammog and MRI. MRI 6 months ago revealed dense breasts, calcification and multiple nodules, biopsied one - was negative. Risk was 1 on the L and 0 on the right. Repeated MRI 2 wks ago: more multiple nodules (supposedly benign), overall risk however jumped to 3 (= doubts) for both sides. Recommendation was repeat in 6 months. They have to have their heads examined. Is it just me or is it normal not to want to play roulette with a wait and see strategy in a high risk situation?? I don't get the picture. I submitted an online request for a 2nd opinion at UCLA (to wait or to cut), but I am truly wanting a bilateral mastectomy - which my physicians didn't offer, but when I brought it up they said it would be a reasonable option given the risk of 3. Im not sure why it is such a difficult decision - should seem light a no brainer...Im not wanting the risk to potentially jump to 4 or 5 at the next MRI. I don't even know what help the tumour board review will offer. No doctor around that table is going to say "wait" and risk that it was the wrong decision. No doctor around that table is going to say "cut off what might be 2 potentially non-cancerous breasts". So am I right in thinking that the decision boils down to do I want to live in fear or do I want to live without breasts.......Thanks for helping me realize what the obvious answer is!!!! Bummer though. Not an easy prospect.