Lori's onc told someone(not her) that he would always advise every woman to go for the mastectomy. He has seen women coming back with a recurrence in the same breast many times. Lori found this out AFTER her mastectomy, so it gave her more piece of mind.However, she had rads also. Ups the % of survival rate. Not alot. but every % is possibly years of living in her mind. Trust me, Lori and our family did extensive fact finding.  

 

Each woman has to make that decision. The only problem is the "whirlwind" that you so eloquently describe, which is what every woman experiences. They ask you to make a decision...OKY DOKEY!!!! You tell me I have cancer...throw all sorts of medical terms my direction, TNBC...what the hell is that???? Let's take that breast off...I DON"T THINK SO Oh, and by the way, there will be  chemicals poured into your body, which,  if not done precisely could kill you. Get all the info you can, which..... by the way .....we don't have very much info on tnbc...so it will basically be a crap shoot Having said that..my friend, (my age),and Lori's bc mentor, dx TNBC 6 years ago, had a lumpectomy. So far so good. Her tumor was small, Lori's was not..and there were 2, one which they missed with an ultra sound.

 

Personally, if it were me..and it is not...I would go for the mastectomy, even if I was only 26 years old. I felt peace when Lori had hers. Our entire family felt peace.

 

So, Joan, you wondered out loud, and I answered, as the 67 year old outspoken woman that I have always been.

 

Hugs,

Nancy

 

Here is what I think.... The last thing I wanted was to have my breast cut off... Even after be dign. stage 3 with 11nods showing up on the PET scan as being positive, I still didn't want the surgery I did chemo first and after 9 months 3 of A/C and 6 of Abraxine I was NED, so off to Paris for me to think about the surgery....

 

I thought if I am NED why go through all of that... My onc said okay if you really don't want the sugery we will just watch you, BUT because you have been off the chemo for 3-4 weeks, let me do a breast MRI just to make sure you are still NED... I say okay let's do it... UGHhhhh so the onc didn't call that night, and I went in to his office the next day checked in, and there is a lab form... looking for CA27.. I looked at my friend and said, I didn't do well on the test, he is checking for cancer markers So I had the blood taken and went in to his office... and yet again heard the words...THE CANCER IS BACK AND IT'S BIG!!! in just 3 1/2 weeks a tumor had grown in the breast 3cm, and a lymph nod was 4cm...

 

So the choice was made for me! I decided to have them both taken off, if and only if they would do reconstruction at the same time... So after much hassel I, at last was able to get doc's as well as a radiation onc to agree to the reconstruction... YEAH for my team!

 

Okay to make a short story long... The pathalogy in the right breast (not the cancer one) showed that the cancer had started to spread to this one as well... And just so you know the cancer tumors that had come back grew over 1cm in the 6 days between the MRI and surgery.   

 

So do I think TNBC should have a mastectomy???? as much as I want to say no, not necessary, I would have to say YES have the surgery and have a better chance...

 

This cancer is so nasty and it dosn't fight fair at all. I was told in the very begining that the mass. would only improve your chances by less then 10% I'am just not so sure in TNBC if that is true

 

Just my story Joan, I don't know if I answered your questions or not, but I tried...

 

Take care of yourself,

 

Beth Anne

 

I had mine last year and understand "why" I had it I just can't accept it in

my heart.  It makes me so angry at c that women have to do this sometimes. I wish I could get to a point where I accept what I did and get my esteem back up where it should be.  It brings tears to my eyes just typing this.

 

Beth Anne you should have had your hard times!

 

 

 

 

 

Triple neg is so very nasty.  Hey you guys this is a poll, please vote.

 

 

I hope it wasn't what I said that brings tears to your eyes

 

As I said, this isn't me...it is all of you. I can't even begin to imagine the emotions that all of you experience when having to make this decision. I feel such pain when I look at my daughter of only 46 years of age, and know that she felt she had to have this mastectomy to help ensure that she would live way beyond my years. Perhaps a lumpectomy would have been all that she had to do. We wil never know that, but Lori still has so much to offer to so many people, as do all of you.

 

I feel so fortunate to know all of you and please know that when you look in the mirror, you are looking at one courageous, intelligent, loving, caring woman. So, your esteem should be through the roof!!!! Inside your body beats the heart of a real woman, whether you have your breasts or not. You had breast cancer, and your life will never be what it was before bc.

 

Every morning when you get up, look in the mirror and look directly at your eyes, and tell yourself that you are a beautiful, strong sexy woman....and...believe that every hour of every day.

 

Today is the first day of the rest of your life,

Love all of you,

Nancy

 

 

 

 

 

Thank you so much for the reminders of good things, it'll get better.

I feel bad for Heidi too and all of the women young and old.

 

Lori and Heidi seem to be handling it so well, right back at life as if (almost) nothing had happened, course we don't know what's in their mind but this second time has taken me more time to recover.  I'll be fine, need more patience though.

 

Hugs sweet Nancy

Hope there are some oncs. reading this and we should let them know about this poll - and mastectomies should be recommended to TNBC patients obviously!

   OK I just saw that only TWO persons have responded to this poll - nevermind!

 

Yes, hindsight is 20/20 and if I could do it over again I coulda/woulda/shoulda had bilateral mastectomies. Being triple negative with the first Cancer and BRCA 2+ threw another rock into the blender and it became crystal clear that my life was going to take a major detour...again. Second guessing ourselves is a waste of the precious energy we all have...

 

Linda

I know thatI have said this several times...Lori said that her onc told someone (not her) that he would advise mastectomies. He was seeing "come backs" with only lumpectomy.

 

However, a friend of mine is TNBC, had a lumpectomy, chemo and rads. She is now 6 years out. She didn't even know she was tnbc until Lori was dx last year, and she told Lori her path report.

 

Nancy

I am amazed at the women I have met around here being a tiny rural town I've met a few and they don't have a clue.  OK is so behind the world it seems except in the two big Cities.

 

Sorry to burst the bubble.  But I had the bilateral mastectomy and just had a recurrence in the non BC breast. (its only been 7 months since my mastectomy)

 

I love these polls though, We really can gather alot of info that way.

 

How are you doing now? 

 

 

 

If one of you would like to set up a new poll that would be great.

 

I for some reason cannot do this at this time.

I was going to take your poll but MY particular scenario is not listed! Heres a new choice for your poll! I had trip neg in one breast, stage 1, not in nodes, 1.5 cm tumor. I had a double mastectomy to get rid of "the cancer beast." It was found out after my surgery in the biopsy that there were abnormal cells in my "healthy" breast that was not diagnosed cancerous. So it would have been a matter of time before I would have heard those words again, "You have cancer." I had no radiation following surgery. With a double mastectomy total of six months of chemo (4 treatments of AC and 12 treatments of Taxol), my cancer came back in only 5 months from finishing chemo on the same breast. It was small, 1.5 cm and had not spread anywhere. I was shocked and in disbelief this could happen so quickly. While my oncologist believes the cancer was left behind during the mastectomy, the surgeon says that maybe the chemo did not work. All I know is I did everything they suggested to the most conservative degree.

 

I must say that the reconstruction was done beautifully and made me feel feminine and whole again. While the "feeling" will never be the same as real tissue, I look great in tank tops and bras. Having the masectomy is something I do not regret. It is amazing after the tatoos just how real everything looks. When the scars fade it will even look better.

 

I agree with you that the next round of chemo is basically a "crap shoot" and the thought of being sick and possibly losing my hair again is disheartening to say the least.

 

Now, it is suggested that I take Carboplatin and Gemzar. Has anybody had that concoction? Also, this time they reccemmend radiation. Now I am concerned about my implant and the effect radiation may have on that. Best wishes to you Joan. Thanks for the poll and sharing your story. I am new to the club and it's nice not to feel so alone with trip neg.

Val

Hello,

Did you remove the implant because of the radiation? I had a reoccurance and will have to do radiation after just completing the reconstruction with tatoos and everything!

Thanks.

 

How horrible for you to hear it is back in only 5 months!  Bless your heart.  Those are hard words to hear and it means back to chemo, again!

 

I remember when I was told the second time and I was not only angry and ready to rip heads off because of the radiologist's error but devasted at the same time.  What a hurricane of thoughts.

 

I hope your second round goes smoothly for you so that you can get on with your life.  I have not had the chemos you mention, the platins are supposed to be good for us.

 

Keep us posted on how you are doing and hang in there, you'll get thru this, we just do it cuz we know we need to.

 

http://www.chemocare.com - http://www.chemocare.com is a website you can look the chemo's up on and it also has alot of good info about chemo, side effects, etc..

 

 

I had lumpectomy, no nodes, clear margins and mine came back in my lungs within 2 yrs. Go figure. Thought I was clear and good to go. WHAT IS GOING ON HERE?

Wendy

 

I am new to this site. I was diag 6/08 with grade 3, stage IIB(not in node) triple negative breast cancer. I had a lumpectomy in July, when my breast surgeon went in she found out my tumor was bigger than she thought - size 4.1cm - and she also found another small tumor - size .4 cm -  near the larger one. She said my cancer is aggresive and I am considered high risk. I am currently in chemo - just did 4 treatments of AC and now am doing 12 weekly treatments of Taxol. I have been discussing with my breast surgeon getting a double masectomy done because I am 36 and have a fear that I will have a reaccurance. I have been reasearching about this tnbc and it seems that it is a more aggressive form of cancer. I have taken the genetic test and it came back negative but of course my oncolologist and breast surgeon told me that I am still high risk b/c of my age and I am african american and the grade and stage of my cancer.

 

Do you think I am correct in making the decision to have a double masectomy done once I am done with my chemo treatments? I feel in my heart it is the best decision for me.

 

I am so sorry the breast cancer came back.

 

I think what you should do is not be so hard on yourself about

how you did your first treatments.  You did the best that you could at

the time.

 

I believe many of us who have had it come back can look back and wonder if but it won't change a thing.  My first time I had the chemo/rads and it came back although I did have a lumpectomy.

 

It is crazy the way this disease works and appears darn hard to stay ahead of the game.  Joan is right, the Carboplatin is supposed to be a good one for tri negs.

 

I hope you will keep us posted on how you are doing and best wishes.