How long NED after 2nd bc

Annie62

I was wondering how many years NED everyone is after a 2nd (or 3rd etc) bc. I've been telling myself that I can be NED after my recurrence, but then just today I had to fill in for a co-worker who had a family emergency. His mom had bc a few years back and has been 'doing great'. Well she needed to go in today for a biopsy of her a mass in her brain.

Am I being realistic or just fooling myself?

Thanks,

Annie

Faith316

I was originally dx with IDC in April 2008.  Had lumpectomy and node dissection in May 2008.  Chemo (AC, Taxol and Herceptin) from June 2008 - Nov. 2008.  Continued with the Herceptin and had 30 radiation tx from Dec. 2008 to Feb. 2009.  During the rads, I started having signs of IBC but all my doctors thought they were just side effects of the radiation, so we just watched things.  I didn't have a biopsy until June 2009 at which time I was dx with IBC.  I was referred to MD Anderson in Houston, TX.  My onc there stopped the Herceptin and switched me to Xeloda and Tykerb which I stayed on for 6 months (July 2009- Jan. 2010).  Stopped Xeloda in Jan. 2010 but continue on Tykerb to the present.  I had a mx and another node dissection in Feb. 2010 and at that time, there was no sign of any cancer, nor had there been since one month after I started the Xeloda and Tykerb (which would have been back in August. 2009).  All scans since that time have all been clear.

Long story short ----- I have now been NED for 18 months since my second BC dx.  I just got back from a checkup at MDA and my scans remain clear.  In fact, my onc told me I didn't have to go back there for a year!  But, to still see my  local onc every 3 months and continue to have monthly blood work since I am still on Tykerb indefinitely.

You can be NED after a second or third dx.  I am and I intend to stay that way for a long time!  Hope this helps you.  Good luck!

Annie62

Thanks for your reply Faith. You better stay NED for a long long long time. Always would be good.

AnneW

Well, I'm almost 9 years NED from my first primary and heading toward 4 years NED from the second one in the other breast.

No reason to think that you can't have this, too!!

aspen

I am 13 years out from 1st on left, 7 years from 2nd on rt. and 6 years for 3rd on left again.  Three different primaries, three different cell types.  #2 and #3 were not recurrences.  Had BMX , no recon and 5 yrs of Femara after #3.  If there is a #4 in my future, it is going to have to catch up with me, I'm not waiting on it.

Annie62

Thank you both!!!!!

Annabella58

I am ten years out from 1st (IDCIS), 3 years out from 2nd primary in the same breast.  Had mtxmy, recon, and about to go get mammo on the old saggy aggy.

On arimidex, so reason to worry, but of course, we all do.

I'm going for a prophylactic mtxmy when I can, as I'm done.

No reason to be concerned, but we all get this way. 

Rainenz

I'm 14 years out from my 1st Dx with node involvement and nearly 5 years out from my 2nd Dx on other side. Had 29 Pos nodes that time and am doing well so far.

Annie62

I appreciate everyone taking the time to post your replies here. Thank you so so so much!

BCO rocks!

Annie

deemarie

i am so alone in this battle, I really dont have many friends and this is my third time with this BC.I will be starting tykerb  thursdaty praying this will get rid of the very small tumors in my lungs,should I be on any speacial diet? what are some of the side effects from this drugs?I also am taking fasodex,my dr she somewhat not worried about anything. I am 62 years young and my daughter told me  she hates me and she wish I would die from BC. I have been so depress,but I realize there are some women worst off than me,please keep me up in prayer,I know that gods loves me if knowone else does.

Annie62

Hi Dee,

So sorry to hear that you feel so alone. This community has a lot of supportive women. I see you have only 15 posts in 2.5 years. Maybe you could participate more in the forums here.  I don't have experience with the drugs you are on but I'm sure others are. You may want to post some questions in the Stage IV forum. I think some ladies there are on those drugs.

Best to you,

Annie

DebbieSue

I was NED for 11 years after my first primary on right side, that was triple neg.  I am 6 months NED from recurrence of ER+ PR+ in the same breast.  

I never worried about having a recurrence as I reasoned that if I found it the first time, they'd surely find it if it came back!   I was right.  

I'm scheduled for a DIEP flap procedure on May the 2nd, and I hope to be able to cope as well this time as I did 11 years ago.

I wish you all the best!

Annie62

Debbie Sue -

 Great post.Thanks!

Annie

bak94

Rainez,

What type of chemo did you do the second time around? I have just been diagnosed with a second primary (i think, as it is in opposite breast) I was triple neg before (2003), haven't got the final path work back, but probably triple neg again. First time I did ac followed by taxol and am just wondering what type of chemo they will use this time. My appointments start next week and I just want to have an idea of what I am going to have to face. I am having a hard time, was it harder the second time around?

Annie62

Hi there,

BK- I'm so sorry to hear that you are going through this a second time. Totally stinks. We both were clear about the same amout of time.

 I was ER/PR+ Her2- the first time and this time Er+  Her2-  but PR-.

Second time around I did Gemzar and Abraxane. Abraxane is a taxane, like taxol and taxotere. Overall it was easier the AC and T which I also did before. I did lose about half my hair. Onc and chemo nurses said most people don't lose it - just thinnning, but when I lost it onc said it was due to the dosages and frequency. I did 4 cycles . Each cycle was: Week 1 chemo, week 2 chemo, week three off. So I did a total of 8 treatments. I also had neulasta after week 2 of each cycle.

PET scan after 3 cycle. Onc said if chemo wasn't doing its job we would switch to another. Thankfully, the lymph node that lit up the PET scan pre-chemo and was the deciding factor on chemo was clear.

Onc met with the tumor board (I really hate that term) to discuss continuing for a total of 6 cycles or 8 cycles. She said that there is no official regimen like dose dense. Board recommended no more chemo. (I also had a zero on the circulating tumor cell count.) And no rads (previoulsy radiated in area). 

 So as of 2 weeks ago, I 'm done with chemo and considered NED. Going back in 3 months for a PET. No hormonals at this time. I was ER+ but not strongly and I recurred after tamox and aromoasin so it doesn't seem to make sense.

 Please post back and let me know what your onc recommends. Mine spent about 2 weeks deciding what to do with me!

 I wish you the best. Hang in there and please ask anything!

 Annie

PS - Sorry I did't see your post earlier. I didn't check the site this weekend.

Annie62

Realized I meant to add this as well:

Digestive issues were not as severe with this combo. I had some fatigue but worked through treatment. I have the option of working from home and did so about 1/3 the time. I was able to make plans on the weekend of the week I didn't have treatment including eating out and enjoying it or taking a walk. I had heartburn that TUMS took care of the other two weeks.

I also had the oncotype test done and my cancer seems to be very chemo sensitive.

 If I think of anything else, I'll let you know.

hrf

Had my first dx in Oct 2004. Did FEC. In Feb 2009 had second dx. A primary in other breast. This was ES+/PR+. Had TC. Second time has been much our difficult both physically and emotionally