Calling on all triple negatives w/ local recurrence

Caleb , I think every dr. states things differently, but really its just a matter of semantics. Recurrence vs failed treatment to me doesn't really matter - either way the cancer is there. As there is no way to examine every cell left in your breast, no one can be sure that tx "got it all". What matters to me is future options for treatment. Whether its recurrence or not, the fact it's still there shows how aggressive it can be and I would want to fight it with as aggressive  a treatment as my body can withstand. I'm the type of person who would look back and say "if only I had done this...". That being said, I will do everything I can do now and I will know atleast I gave it my best shot.

Beach,  I was also told the most likely spot for recurrence would be on the scar. Not only is it not on the original scar, but the spot where my 1st recurrence was excised is also completely clear. I was so concerned it was IBC, but with the little bit of rresearch I've done, protocol for tx seems to be the same. Perhaps the only difference may have been to forego the skin sparing mx, and go with the complete amputation. but at the time, i didn't even know there was a difference. I know it was all explained to me from the platic surgeon, but so much information is thrown at you all at once (when your mind is still reeling form the initial shock), that I didn't fully understand it.

There are so many wonderful people on these boards to help with the questions one might have, but unfortunately it usually after the fact. If only there was a way to pair newbies with a mentor before any decisions are made, so they may be informed of all the questions that should be asked before tx. Perhaps I should talk to my BS about starting a program, although i don't know if any Dr. would like to be second guessed.

Slowloris - I like the idea of a mentor here for newbies, but, unfortunately, there are too many people who give wrong information, or start TELLING others what to do instead of offering an opinion.

3.5 years out at second dx. Bmx with reconstruction and now doing 6 tx of carboplatin and taxotere. Finish number 3 next week. Pet and CTs clear. This chemo is rough for me. More tired,increased depression after chemo and mouth sores. But by 7 days post, I'm good again. Working full time.

My MO says 75 percent chance of disease free survival at 5 years. Trying to focus on my low fat diet and exercise. Hard to do during tx.

Optimistic most of the time, full trust in God,and greatful for my family and friends.

Thanks Luah. I don't want to scare anyone. My onc was very surprised as was I. He tells me I still have a high chance for "cure". I think the best cure for me is learning to live every day to its greatest potential and not think about tommorow. The veil that most people wear, thinking they have control over their lives, has been torn off for most of us. The only control is how we respond. The biggest tragedy would be to waste today worrying about tommorow. Easier said than done. But I'm working on it:)

Kathryn -I think our cancer is sensitive to many types of chemo. I had 2 opinions and we went with carboplatin and taxotere. I think the second time is harder only bc I've done it once and didn't expect having to do it again. This forum is helpful to me as I'm tired of talking to family and friends about cancer. It's easier to share with you all as you understand and are in the same fight. I'm tired of "being an inspiration" and a "pink warrior". I'm a person who has had cancer and is getting better and currently has no sign of disease. So let me be "normal" as long as I can. And let me not waste that precious normal-no perseveration on cancer. Chemo done in September, state 2 reconstruct in October and I'm out of cancer land for as long as God allows. Strangely, I can talk about it to all of you bc I think you understand. Love and prayers to you all.

Beachbound-I can relate to every word you wrote. I keep remembering what my boss told me about doing my best. That it would be better on some days than others and it is ok when our best is not up to our usual standard. Nothing stays the same. In the valley now means I will be on the mountain when I'm further out from chemo. This too shall pass.

Lol-enough platitudes, I'm working today and should get back to it. Happy Tuesday:)

Just stumbled on this - don't come here very often anymore.

YEARS FROM FIRST DIAGNOSIS?  Four years, 1 month and 2 days

TREATMENT  GIVEN ?  BMX with DIEP reconstruction

WHAT DID YOUR DOC EXPLAIN ABOUT TREATMENT AND %/ STATISTICS ?  Told me that there was little to no benefit to doing chemo again and I was unable to do rads again.  Oncs have said 30-40% chance of the BEAST coming back again.

BRAC + OR -  ?  BRAC Negative

WHAT KIND OF FOLLOW UP DO YOU RECIEVE NOW?  I had CT/PET scan at 13 months after DX and will have another CT to compare to in a week or so.

I take Lexapro to help and am generally OK except when it gets close to doc visit time.  Tumor markers are done every 4-6 months and have never been out of range (even when I had recurrence in breast markers were done about a month before boob smasher found it again).

I hope you all are well soon.  I pray for the day when the BEAST is gone for good.  Namaste'.

crs319, I am very pleased with the breasts that I have and the tummy tuck I got.  It took a touchup on the breasts but they are a perfect size for me now.  And because they are perkier than my old ones I rarely wear a bra.  I love that.

I will say, no matter how they are now, I desperately miss my breasts.  Especially for sex.  I know, TMI.  But these new ones don't do it for me or my hubby.  Oh well.  Such is life.

I wish you well and the year will be over before you know it!  Namaste'.

Count me in on that as well. We've only been together 3 years, married almost two. They were important:) I think I will be alright once the belly skin patches are gone but I'm still wearing tshirts til then. TMI probably but a very real part of building our life back.

Yes, Kathyrnn, it is always nice to know I am not alone.  I hate that others have to go thru it but it does help knowing others "know" what its like.  That's why I continue to return here.  I need you ladies.  Ya'll help keep me sane.

CRS -I just posted this in the TN and I'm posting it here to hopefully give you a chuckle. I'll be starting chemo soon, but I found the process extremely frustrating!



I wanted to share with all you ladies that I was REALLY, REALLY BAD at my visit with my MO today. (The purpose of the visit was to chose my chemo and to arrange to transfer to a local facility for the treatment)



She asked me what I had decided. I explained that the decision had been difficult because 3 MO's had all given different recommendations. I reached in my bag and took out a small gift box and proceeded to shake it. I opened it up and reached in and took out one of the many slips of folded paper that were inside the box. I unfolded the paper, read it and looked at her and said, "okay....I'm going with CMF." (I wanted to bring a Magic 8 Ball, but I couldn't find one)



I wish I had a picture of the look on her face!!!!! Her eyes got as big as saucers and her mouth dropped wide open. She blurted out, "OMG.....tell me you didn't really just pick your chemo by that method!!!!!!!" She figured it out quickly when I started to laugh. (All the slips said CMF). I explained that it wasn't really "a choice".....out of all the chemos that were suggested, it was the only one that was at least mentioned by all 3 MO's (none of the others were the same).



In my defense, when I met her 3 months ago, I warned her that I was going to be her "worst patient". Sadly, this poor, very sweet young woman is finding out that I was telling the truth!

Now not no

Kathy, that is HILARIOUS!!!  My MO learned early on how stubborn I am.  When I met with him for the first time, it was a Friday and I had received my diagnosis just 2 days earlier.  I  was a smoker that was in the process of quitting.  He asked if I smoked and I said yes.  He replied by saying “Ok.  You quit today.”  I looked at him and said, “How’s Monday?”  He continued to tell me that I would quit that day.  This banter went back and forth a few times when I finally said to him, “Look, I’m a 30 year old woman that just found out she has breast cancer and I’m going to have a mediport put in on Tuesday so you can start pumping poison into me the following Monday.  I AM going to spend this weekend on the beach, smoking and drinking myself silly with my family.  How is Monday?”  With a smile on his face, he said, “You’re one of those, aren’t you?  Monday is fine.”   I haven’t had a smoke since then and that was almost 2 years ago.  We’ve had a great relationship but he knew then I would keep him on his toes. 

Happy Friday Y'all!

I can't say I blame you Kathy. I got a great laugh from your post. Thanks again for sharing.

Kathyrnn - I'm doing better now that we are actively managing pain and constipation.  Just 2 more to go.  I am exactly where you are with "standard care".

For those of you that smoke - I could sit beside you and inhale.  I quit in 2002 but have never really gotten over wanting a cigarette.  Now with cancer, the little voice in my head (I have many!) says "it's okay, you can have one".  Still not sure if I'll give in or not.

netty - I hope someone can help you with the numbers.  I'm no good at that.  Even if I could remember the percentages, I hardly ever believe them.  I have questions like, which studies did that come from?  How many studies were analyzed.  What kinds of cancer? Anecdotal or scientific method? Who did the studies?  Who did the analyzation?  Is this info from a press release, your own research or is it something you have to memorize in med school?  I'm pretty sure they would lock me up if I demanded answers to those questions.  Then if they DID answer, I probably wouldn't understand the answers.