DIEP 2013

Goldie I think.. I KNOW that study is right on the money. I was stressing and losing my mind trying to figure out what I should be doing and if anyone had successfully been through it. I wanted real life answers not text book descriptions from my dr. And it was very depressing not having it. When I found this thread and started getting real people who understood it was like a mountain came off of my shoulders. Having a safe space to say I am scared, sad, frustrated and can't sleep without worrying your listener to death does wonders!! Also a quick sanity check to say "is this normal?" Or just knowing someone truly understands you is invaluable!

I know I'm going on and on but I can't say enough. I look forward to being able to give back for years to come

goldie...I doubt if you "failed" her, I'm sure you were and will be a great help for her. There will certainly be differences in her journey, from yours, but there will be common bonds of need for support and understanding. It is a good thing that she reached out to you. We all need someone.

Thanks, Bailey. How could I forget Hyster Sisters. I found out a lot there when I had my hysterectomy several years ago. I will check it out.

Butterfly, I know what you mean about wanting to give back, "pay in forward" sort of attitude. But, you would be surprised how many women want to move on, and forget it once they are done with their BC. I hope I never get like that,

Baily - I hope all is okay with you. I appreciate your sincere kindness when I joined a few days ago. Please keep in touch. :0)

goldie and deb, I feel a little better knowing I'm not the only one fooling with things I ought not to. lol

mommalou - hope you had a great trip!

RHGSR - strep throat, of all things! I hope it doesn't mess with your surgery date either. BRCA - just my two cents but if you don't have enough family history to qualify for your insurance to pay for the testing, then it's pretty unlikely you have the gene. Obviously get input from your doctor but I would not want to get more surgery based on fear. I know in the beginning this is all so terrifying and I know my gut reaction was to have as much of everything removed as possible. But there's no benefit and there is certainly risk in surgeries that are not really necessary. You could also ask your onc or surgeon to refer you to a genetics counselor for their opinion too. I know the bills suck... just take care of yourself and the bills can wait if they have to. Your family would much rather pay some medical bills, than not have you around.

pattysmiles - great tip on the hand sanitizer during chemo. I always carried a little bottle with me during chemo and used it regularly, just to be safe.

Cherrie - wow, your one year boobday!!! That's awesome! Oh I can't wait to buy a bunch of pretty new bras!!!

RHGSR - my salpingo-ooph will be because of a large cyst (not caused by Tamoxifen - they spotted it the day they found my cancer), not genetics. But... and that's a big but... my gyno-onc says that despite my sister testing negative for BRCA mutations, my family history suggests it's genetic and there are far too many genes involved to dismiss a genetic predisposition even without BRCA. IMO, women rely far too heavily on the BRCA tests and decide that, despite family history, if that one test is negative then it's coincidence. When my sister had the test, the geneticists had calculated her chance of being BRCA positive at 94% and they were absolutely floored when it came back negative. Their official report said that they are absolutely convinced that there is a genetic component and it was them that recommended that I have annual MRIs, and that's what found my cancer. I don't mean to sound like a panic-merchant and would absolutely not advise unnecessary surgery, but if there is family history of BC, then you need to discuss this with a gyno-onc. They are the experts.



Cherrie - happy birthday to your girls!!! I am so uplifted by your positive outcome, and Marty's - NOLA must be stunning!

thank you ladies. I appreciate the honesty of this board and the willingness of you ladies to share your candid thoughts.

I have no family history of breast cancer that I am aware of. From my understanding, that is why they wanted me to test for BRCA... Not because I had a family history, but because I didn't have one, plus found my lump while bfing#3, and am under 40.

RHGSR- Being under 40 would motivate me to do the genetic testing. At least you would know and could make more informed decisions.

As lahela brought up, there are still so many unclear components to bc..... genetic, mutations, etc. that one test is (imho) unlikely to hold a complete and thorough knowledge of what risks we may or may not have. Family history may/may not hold the answers either. When I was dx at age 41, I was the first woman in my family to be dx with bc. Later, my mother and one of her sisters both were dx with it. My aunt, passed away from bc. So....do I have a genetic link....I'm thinking there likely is something there...would a test come back positive....who knows?

mammalou.....!!!!!! Hi there, girl.....sorry, I missed your earlier post! Glad to hear from you, and to hear you sounding good!!!

no "mopple" ....(Wilbur's obviously having some fun with you!). Trust your surgeon, rest and heal......bet supper will be wonderful!

Mammalou -- glad to hear you are almost out of the hospital!

RHGSR -- I had genetic testing at the very beginning of this process.  I was the first pre-menopausal woman in my family to be diagnosed, and have lots of family with BC (mom, both grandmothers, two aunts), as well a whole host of other cancers, including ovarian.  My tests came back negative, but again, the thought is there is likely some mutation that hasn't yet been identified.

Once I get through this surgery, I'm going to get a second opinion on ovarian suppression/removal.  My current med onc doesn't think its necessary, but I have a friend who is an onc, who thought I should think about it.  One thing at a time!

Ridley

Wilbur is really kicking in. My mopple😊 is a mipple. Lol nipple! Apparently my PS is afraid of tight skin complications.

Oh, and my MO didn't think an oopherectomy was necessary. She said if bc were to travel, it will just travel. It could land on the peritoneum or anywhere. Yuk! She actually doesn't think my cancer will recur. I just humor her.....

The family history thing stinks. My mother and her sister were diagnosed in their 40s, and I was diagnosed at age 32. We are BRCA- but to me, I am sure it is something genetic. I worry about my little sister a lot. My onc's NP thinks an ooph is a great idea and was doing cartwheels with glee this summer when it was found I had a fibroid on my uterus and "something" on my overy, as this would get me a hysterectomy with ooph covered. But I am not wanting any more surgery. I'm tired of surgery and I don't want to be going through menopause either. I feel like I'm finally feeling good and able to enjoy life again.

Sherbob. 3 months with a large open wound that I had to pack 3 x a day. It was a pain and wearing compression got very uncomfortable, but I made it. It healed itself and I just had stage 2. It was amazingly easier and the anesthesia patch is like a miracle to me. Hang in there. This will pass.