Recurrence - Chemo or No Chemo? Triple Neg

Reni

Recurrence - Chemo or No Chemo? Triple Neg

Reni

Hi Everyone,

I was Stage 2B in 2001 and had a lumpectomy (clear margins) chemo (ACT) and radiation (12wks) it was rough but I made it ... I vowed never to do chemo again!

Fast forward to May 2008 diagnosed again. Opted for a dbl mx (even though right breast was clear) with DIEP reconstruction. Had surgery Jun 1 and got my path report 2 wks ago telling me the right breast had DCIS!! Phew thank goodness I got rid of it.

I met with my oncologist today and he is recommending chemo I really dont want to do it ... the recurrence was triple negative (my first wasnt?? yet they say its the same cancer) and all lymph nodes were negative and the 2 tumours were small .8 & .5.

I know its a toughie but anyone in my similar situation and what did you do?

He says do the chemo (and give myself a better chance of seeing my 3yr old go to college) or just hope for the best with scans and physical exams. My first chemo was really really difficult I was sick througout the 6mths and ended up in hospital 3x. My port never worked so finding a vein took at least an hour each time! He says the meds now are very different & things have advanced 7yrs... he says nauseau is limited and so are energy levels. He is recommending Gemzar and Carbo 6 cycles 1 every 3 weeks. Anyone familiar with that?

Thanks for reading...

lexislove

I am not TN,but being TN chemo is your biggest arsenal. you are unable to do hormonal therapy ect...so there isn't much left. It's a pain in the butt having to go through all this again.I feel for you really.I would be mad too.But , I think your onc is right in recommending chemo. TN breast casncer is very aggressive its best to hit it with everything that they have.

Good luck with your treatment!

bourscheid

I am Stage IV and triple neg. Was on chemo since Oct. 08 and it managed to get rid of all the cancer in all areas with very limited side effects.  Have worked full time as a teacher (5th grade) and maintained a relatively normal life.  I am actually now on a maintenance chemo to hopefully prevent recurrance and it has been all good.

Hope this helps.  Your onc is right when he says the new treatments are better and easier on the body.  Not familiar with Gamzar or Carbo but I'm sure there are ladies on this board who are.

 Good luck!

Hugs and blessings,

Lori

wayover20

I'm TN and currently still on chemo (abraxane and avastin) for a large mass recurrance, that has worked wonders in keeping the inoperable mass in check.  I hear you about your side effects from your first chemo regimen and want to say I was never able to continue working thru any of it (I'm a nurse...on my feet 12 hrs).

Yes this trip neg is aggressive and while it's your hard decision to make to take it or not, just think if you say no and take your chances and it reappears somewhere else larger and more difficult to control, you may suddenly find yourself saying "why didn't I do it then??".  

I don't mean to scare you but this trip neg is a bear so if I were you I'd take the upper hand and slap any chance of it coming back into oblivion. For you and your family.

Good luck.

isityouisit

I had b.c. in 1989, 6 weeks radiation & lumpectomy, Stage 1.  Got it again in 2007--not considered recurrence after 18 years--Stage 1 again, triple negative (back in 1989, they didn't test for that), poorly diffeentiated carcinoma, Grade 3 out of 3, Modified Bloom Richardson Score 9 out of 9, P53 of 90%, KI67 of 95%, unfavorable prognosis.  Had dbl mastectomy and no reconstruction.  My oncologist recommended chemo after the dbl mastectomy.  Second opinion oncol at City of Hopoe also recommended chemo.  Had 3 FEC and 3 Taxol.  The Taxol gave me neuropathy, which I still have. . . my experience is that chemo is always indicated for Triple-negative tumors.. . I'm also BRCA-1 positive, as is my daughter.

glostagirl

Another TN lady checking in.

I felt, after the first time, that I would never do chemo again.  Yet here I am.  I'm having Cytoxan and Taxotere 4 x's every 3 weeks.  2 down, 2 to go.  I find the Neulasta makes me feel worse than the chemo.

Honestly, I did consider not having chemo a 2nd time, but too many people who care about me objected.  So I'm taking the gamble that it will work this time.  I have a lot to live for.  That's what it often comes down to in the end. You give your self up to it, hopefully for the short term, in the hopes that you'll make it for the long term.  

Good luck to all! 

Anonymous

Hi Reni, I would do chemo if I were you.  If you've had the red devil before, everything after that is a breeze.

 I do have a question about your reconstruction.  How is your irradiated breast holding up?

 I'm concerned because I have a biopsy scheduled on my left (irradiatiated) breast and I am almost sure it has cancer again.  Mastectomy will be next, I'm sure, because the mass is big.  I'm worried that reconstruction will not take well on my irradiated breast.  How is yours doing?

Thank you. 

Reni

Hi Everyone -

Thanks for the great advise and posts... I WILL be doing chemo. I see my oncologist on Monday to figure out a start date etc. So I'll keep you posted

Adnerb - My radiated breast looks great but  does not  look as good as the other one. However my PS said its too soon to determine just how different they are cos i'm 7wk post surgery and there is still a lot of swelling. The swelling on the radiated breast is certainly taking a longer time to go down! I have pictures which I will try to post.

Anonymous

 Reni, please let me know what sort of chemo you are going to have this time.  Did you have taxol during your first series of chemos?

How are the reconstructed breasts doing.  I am especially curious about the irradiated one.  My biopsy is 2 days away.  I am very, very anxious.

Reni

Adnerb - the chemo hasnt been confirmed yet but I think Garmin and Carbo are on the cards. I'll know more tomorrow when I meet my oncologist. Yes I did Taxol the first time (and adriamycin, cytoxin).

 The breasts are really doing very well. As stated before the radiated one is more swollen and not as nicely rounded as the other (also due to having a lumpectomy in that one prior). You can PM me if you want more specific info...

ilovemysweetmomma

I would ask them to retest the original tissue they removed in 2004 and retest the newest tissue sample.  My Mom was diagnosed in 2002, they said she was ER+PR-HER- I believe, and then when she had a recurrence in 2005 they said it was triple negative.  Her oncologist said it's very rare for tumor markers to switch, so she retested everything and it turned out they were wrong on my Mom's first biopsy.  If you feel uncomfortable with the doctor's opinion it is always good to get a second and/or third opinion.

Reni

Hi Everyone

Thanks for all the responses. I met with my (2nd opinion) oncologist yesterday and as was initially indicated my first dx was actually Triple Negative (I think I was on the border) but she said she would still have classified me as TN. Anyhow thats spilled milk....

I start chemo on Mon Aug 11. I'll be doing 6 cycles of Carboplatin and Taxotere every 3wks. 

Let the games begin!

rogam

May God Bless and Keep you as you do what is necessary medically.

Anonymous

Reni, how often are your chemo sessions?  Every 2 weeks or 3 weeks?  How are you feeling today?  I pm'd you on day 1 and 2, I believe.  Hope you're feeling even better today.

CaroleAnn

Hi, I am 65 years old an I have had chemo for TNBC. I had Cytoxan and Taxotere. I had 1 positive node in my rt. breast and had a lumpectomy. One week after my 4th chemo I was having trouble breathing and a chest cat scan was done It showed 3 nodes. One is a definate infection but the other two they are calling a metastasis even though no biopsy or anything else has been done. Can they tell this for sure on the scan? Do you know anyone else that this has happened to? Can I have my radiation for the BC and chemo for lungs at same time? 

Reni

Adnerb - hi there... I'm every 3wks. Doing better. Even tho I was hit with awful diarhhea this morning (day5) so feeling a bit weak from that. Otherwise I'm hanging in there...

Anonymous

CaroleAnne, sorry you are getting those results right after chemo!  What kind of chemo are they giving you for your lungs?

Reni, be careful with what you eat.  Wash all fresh veggies.  In fact, I would avoid raw veggies altogether.  Remember, I've been there before.  Never had diarrhea while on chemo.  I had constipation though.