Triple negative beyond 2 years- What was your treatment?

FloridaLady

braunsil,

It sounds like you were very lucky to find this so early, with so many misses. I hope you get a clear cut answer on this chemo thing... You must feel like you are your own doctor sometimes.  We all have felt like that at some point.  Good thing to get those second and third opinions. Please let us know what you find out.

Flalady

braunsil

FloridaLady,

Thank you so much for your support.  Will definitely let you know what the experts think... I'm only 35, that is another factor they take into consideration, making sure that I will be set for many years to come... My surgical oncologist gave me a 1 % chance of the chemo having any advantage, and says that the chemo carries at least double that risk in terms of negative side effects, so he thinks it's not useful. He gave me a 97% chance of being cured at this point. Will see what the other oncologists say, though. I am going to the Fox Chase Cancer Center in Philly on Tuesday for their opinion.

Shirlann

Hi, I had lumpectomy with radiation.  My tumor was only 7mm.  I am just about 10 years out of treatment and doing well.

Hugs, Shirlann

Yukon

I am 2 yrs out and had lumpectomy with DD AC chemo, and 33 radiation treatments.

I go in tomorrow for mammo, and in couple weeks for onc appt (my last 3 mo. checkup then I go to 6 mo.) and my surgeon will also check things out.

Other then that things are going very well.

chumfry

Well, I've reached the three-year milestone on my *first* tumor!  And I'm nearly at the 1.5-year mark on my second tumor---which was a second primary, not related to the first tumor.

I chose mastectomy both times, followed by chemo. For the first tumor, I was just skittish of the radiation needed for lumpectomy. Then, when I developed a completely new BC in my other breast, I figured my breast tissue was just too good at growing cancer!

In 2005, I had dose-dense AC/Taxol. In 2007, I had weeky Carboplatin/Taxol.

--CindyMN

dah0123

Hi Braunsil,

Sounds like you are in the same situation I was only I had a 1.5cm tumor (IDC, Grade 3, ER and PR-, tumor didn't show on mammogram).  I had a bilateral mastectomy also (MRI showed "suspicious areas" in other breast - atypical hyperplasia and DCIS couldn't be ruled out in the "good breast").  I did have chemo as they told me it would improve my long term survival by 20%.  It really wasn't bad (6 mos. of CMF)  - except the needle part - and I'm so glad I did it.  Yes, getting other opinions is a good idea.  You never want to have regrets.  Remember that chemo may shut down your ovaries if you are pre-menopausal - it did shut mine down.  Not sure if that is a consideration for you.

Debbie

chumfry

Braunsil:

If the oncs all agree that you'd only get a 1% benefit from chemo, I wouldn't do chemo. I'd decided that I wasn't going to do chemo for my second tumor (see above post) unless it gave me more than a 1% or 2% benefit.

You have to balance the cost versus the benefit. Chemo is literally poison and some side effects can last the rest of your life. It can damage your heart, give you lasting neuropathy and increase your risk of leukemia. The 1-cm threshold marks the balancing point between benefit and cost. (And by "cost," I mean to your body--not your wallet!) <grin>

My first tumor was 4.5 cm and my second one was 1.2 cm.

--CindyMN

floodclan

My chemo regimen was 6 treatments of TAC (taxotere, adriamycin and cytoxin administered all at once.)  Following that I had a double mastectomy and then radiation.  Ironically, the first doctor who discovered my tumor told me it was benign.  Now I'm approaching my 3 year mark, thank God!

kelty

I'm sorry I have to join the triple negative club. DX on 01/06/09. Just have my mastectomy on my right breast.  Thanks for your stories!

starzhere

I have been NED for 19 years.  I was a stage I and had a mastectomy.  Three years after my first diagnosis I had a DCIS on my remaining breast, it was removed and I didn't require any further treatment.

At the time of my first cancer, I was told that I had an 80% chance of survival at the 5 year mark without chemo.  My treatment was at UCLA and they told me that the standard treatment with stage I was just the mastectomy, but they suggested that I do chemo (CMV) to close the gap on the 20% chance of recurrence.

Deborahann

Hello!

I choose to have a lumpectomy, followed by x6mos of chemo and radiation.. Oops, I forgot to mentioned my dx date, it was 04

jesrv

I was diagnosed fairly early at stage 1. I have a strong family history of cancer so I went for a double masectomy and the Dr. suggested I have chemo and so I did. I'm 6 years out

sahalie

Hi Ladies.   I have probably answered the question way back but here it is again.

I was dx in 2006 with DCIS in left breast (the breast most of us are dx in for some reason)

When the bsurgeon got in there he found it was actually invasive.  I had already decided to have a bilateral mastectomy due to many reasons.  I am so glad I did.

I was dx. stage 1. Triple Negative.  I did A/C which just about did me in.

I am now at six month checkups with labs done the week before appt. 

My oncologist appt. is today.   Next month will be three years since dx.

There are so many inspirations here in this Triple Neg. forum.  Thank you all.

Sahalie 

FloridaLady

sahalie,

I'm so glad your doctor has stayed with your checkups even with early stage disease.  It must be a big relief to know all is well. And thank for another positive story.

Flalady

suzcarl

Hi!  I had a lumpectomy a little over two years ago on 1/8/07.  I was 56 years old, stage I, with IDC, 1.56 cm, and node negative.  I was treated with AC dose dense, every two weeks, for four cycles and Taxol dose dense for four cycles.  Then I had 30 radiation treatments.  So far I'm doing fine, with no evidence of disease.

All the best,

Suzanne 

cheekymonkey

Hi everyone,

I rarely come on to the boards anymore. I was dx'd in February 2005 with Stage 3, Triple Neg, Positive lymph nodes 3/9. Tumor was 7 cm! Went through chemo first AC,tumor shrunk down to 3 cm., then Taxotere, but I was resistant and tumor started growing again. Did Mastectomy on left side, continued chemo Gemzar/Cisplatin. rads, and then had another mast. on right side which showed cells (thank GOD I took it off!). So far so good, I go in on the 18th for my first 6 month follow up (I had been going in every 3 months). My onc., who is WONDERFUL, also told me that if you go 3 years without a recurrence with Triple Neg, you can basically consider yourself cured.

Unfortunately, my sister was diagnosed 3 months after me. She was 5 years older than me. She was also Stage 3, but her tumor was only 2 cm., although she had more lymph nodes than me. She used some alternative medicine in the beginning. She also had complications from her compromised immune system and almost died in the first year. First did lumpectomy, alternative type chemo, then had recurrence 9 months later. She kept fighting, went to reg. Chemo, then surgery, but couldn't get clear margins with her mast. She fought and fought, and it spread to her lungs. We lost her last April.

My point of all of this is....be aggressive!! Triple Negatives can be beat! You just have to fight HARD in the beginning. Then get through the first three or four years and if what they say is true, you'll be fine.

If I didn't have this place to come to every day, I think I would have not done as well as I had.

 Good luck to each and every one of you. God bless. and FIGHT HARD!

JerseyMom

Triple negative 2yrs out. My treatment was: mastectomy, 4AC+Avastin,4Paxitaxel +Avastin, 28 radiations.

-Ren

Melissa1971

I love hearing all of your success stories.

bump it up

bevsteed

I ladies.  I'm triple neg, Stage 3C ILC just had my double mast.  I did neoadj chemo for 4 months, but couldn't finish it all because of pneumonia.  Just found out I've got lots (27) positive nodes.  That doesn't fare too well for survival, but I'm going to try my best and fight hard.  I haven't met many women with late stage triple neg. ILC on here.  Sure wish there was someone with the same diagnosis who was several years out.  Love to all of you. 

Methusala

cookie- anyone really, I know this is older info. but am I reading right that you said you had nodes affected, found by MRI?

How can you be sure without an actual biopsy?

I'm not sure I'm understanding this right.

thanks.

Marlina

33 years old with a 2 and a half year old daughter, recently diagnosed with second breast cancer and 26 weeks pregnant. I'm depressed!!!

maxgirl

Marlina -- I'm so sorry you're having to deal with this again, especially during what should be a happy time.  So scary, too, when you have little ones.  It might have been on this thread or another one on the Triple Neg Forum, where a woman said she had been in your situation, and now she's a 4 or 5 year survivor.  So hope is possible.  I hope you, your baby and the rest of your family come through this with flying colors.  (((hugs)))

Melissa1971

Marlina,

Just curious....did you have a lumpectomy or masectomy the first time around?

Marlina

Melissa1971,

I had mastectomy with axillary clearance both times. I told my surgeon to get rid of everything because I don't want any leftovers, but..

In 2004, I had the standard FAC chemo regime, only at a slightly higher dose because of the grade 3 tumor. 4 neo-adjuvant, 2 post surgery. And 15 rads.

This time round the docs can't do the MRI or PET because of the pregnancy, so I have to wait for the staging. I'll have to go for c-sec at 30 weeks gestation. I'm worried sick!!!

Patsycan

Hey all,

I was dx in Jan, had lumpectomy end of Jan and will be going for chemo starting on Monday, 3 rounds of FEC and 3 rounds of Taxotere followed by 5 weeks of Rads.

I just want to get it done! The cancer is on my mind 24/7. It will be nice to get back to some sort of normal.  It is still a long way off but will be counting days.

This board definately gives one hope.

Thanks for being there.

Pat

tos

Hi Pat,

 I'm so sorry to see you've been diagnosed and hope your treatments go as smoothly as possible.  They have some good meds to help with the side effects now so don't hesitate to give the Onc's office a yell if you have a concern.

 Try to distract yourself if you can at times so that cancer isn't on your mind so much.  We want to be in charge of this not cancer and we don't want cancer to win.  I think once you begin your treatments you will settle into a routine of sorts but keep those hobbies, things you enjoy doing handy for the good days and enjoy what you can.  Before you know it you will be done.

 This is a wonderful board and also I might tell you about http://www.tnbcfoundation.org which is another good place to go and find information and support.  Not trying to sway you from here just a place for additional information since that is what the forum is all about, Triple Negative Breast Cancer.

Best wishes to you,

Melissa1971

Marlina,

I am so sorry you have to deal w/ this while pregnant.

Did you have a a masectomy on the right only the first time around? I am going in for the results from my BRC gene test and obviously if I  am positive I will have a double masectomy, but if not I am trying to decide if I should just get one anyway.I am hearing too many stories of this cancer returning.

tyra

This is an awsome site i first dx in august o4 stage 2 no node invovled ...i did 4a/c followed by 4 taxotere i was doing great i had my life back living life just like nothing never happen .Then in dec 08 found out i had bc againg a new primary in the other breast i was /still is very upset but i trying to deal with it .this time i have stage 3 with 9 nodes involved i am doing taxol and carbo every 3 weeks it is very hard on my body next treatment hopefully my onc change me to at least every 2 weeks,,,,,,,oh yeah i am tripple negative both time

Melissa1971

tyra,

did you get a lumpectomy or masectomy the first time around?

tyra

Hi Melissa,



i had a masectomy the first time around.....i was stage 2 no nodes i did 4 round of a/c and 4 round of taxotere every three weeks