chemo or not?

ettasmom

Hello all,

I am newly diagnosed, Stage 1a, grade 3, 0/2 nodes and tn.  My Dr. has told me by phone that he will recommend chemo.  My first appt. is on Monday, 10/17. My tumor was 7mm, less than 1 cm, good margins, no lymph node.  I feel like chemo is too drastic of a step for such a small tumor caught so early.. Dr says just the TN alone warrants chemo. I will find out all statistics and more info on Monday but am looking for someone in my same diagnosis area who did not do chemo and is doing just fine.... don't know if thats out there or not but thats what I'm hoping for.  All info appreciated!

Thanks,

Deb

Anonymous

I'm not triple neg, but would suggest getting a second/third opinion from other oncologists if that would help you with your decision.  

It sounds like it was caught very early/small.  Unfortunately, there are plenty of stories of small, node negative tumors that had the capacity to metastasize.  BC is a sneaky, unpredictable little beast.

I have a suspicion that most oncologists would recommend chemo with a TN diagnosis.

epgnyc

Hi, Deb.  I was first diagnosed in 2002 with TNBC and had a lumpectomy, chemo and radiation for a 1.7 cm tumor, Stage I, w/clear nodes.  I was diangosed with TNBC again this year in 2011 but this time the tumor was much larger so I needed a very aggressive chemo (I also had a BMX).

I'm pretty certain that any oncologist will want you to have chemo because of your triple negative status.  I forget the stats but with TN there is a much greater risk of getting a recurrence if you go without chemo.  For we triple negatives, chemo is our biggest ally in our fight again BC, especially since we can't depend on the hormonal drugs like Tamoxifan.  Because your tumor is small, the chemo recommended will most likely be very doable.  I know chemo is a very scary prospect (I was terrified the first time), but it's really not as bad as you might think.  Anyway, do get a 2nd opinion to help you make your decision.  Good luck to you! 

Luah

I suggest asking your doc very pointed questions and get a second opinion if you're in doubt.

1. What is risk of recurrence with/without chemo?

2. What are the potential long-term SEs associated with chemo and their risk of occurence?

That way, you can assess overall risks and benefits, and decide. Bear in mind that chemo is the only systemic treatment for TN (which tends to be aggressive).

There is another thread on this - a few threads down, called "No Chemo, should I be concerned?" You might want to refer to those posts too.

Sandlake

Hi Deb..I just had a lumpectomy with SNB on Mon Oct 10th.  Not sure what stage but know I have IDC with TNBC. I will be thinking about you on Monday, my folllow up appt is on Tuesday.  I'm sure I will be getting a second opinion when it comes to making my final decision on chemo.

epgnyc..wow 9 years later!! Thank you for your post..all this information will help me with my new journey I am beginning.  

Luah..Great questions, I will use these when I see my dr.  Thank you! 

ettasmom

Thanks all for your replies. I have read the other threads, as well as more info on the nccn website, the dr susan love breast book, the mayo clinic site and the cancer.gov site.  Lots of info, still lots of questions. I appreciate everyone being so supportive here on all the forums. Its a crappy time and very solitary feeling, even though I have fantastic family and friends, it still feels lonely. Anyway, good luck to us all, and I will follow up after my appt. Monday.

Thanks, Deb

Dara_Diverse

I can not answer your question but wanted to tell you that you are in the right place here on BCO. The girls have given you solid advise. As Susan said, BC is a sneaky rat. I just lost a dear friend/coworker due to that rat. I am not saying this to scare you but after seeing my friend go down so quickly, I have learned that we all must be our own advocate and do everything we can to avoid recurrence. I suspect that my friend had bone mets for a long time that were undetected. She did everything her team of doctors told her to do yet they did not find the cancer in her bones until it was way too late. I am going to send you a PM (personal message) and hook you up with another girl who is TN. Sending you hugs!!

ettasmom

Hello,

Thanks for your responses and pm's. 

I should have said earlier that it was by the grace of God that I even found out I had BC. I had a cyst in my right breast develop that grew very quickly, enough to make me schedule my first mammo in 5 years.  I have had cysts drained in the past and they are pretty common for me so my inclination is to let them be, they develop, then go away. This one got so big so fast I thought it was something different.  Turned out, it was just a cyst and was drained, however, the left side had suspicous calcifications, that was what turned out to be my TN Bc. So, God got me in there in time to catch it early, and I have a great team of friends and family, and their friends and family praying for me. I believe in the power of healing prayer, and of course in the power of doctors and medicine as well.

 I am just back from my medical oncologist appt and though he recommended chemo, and stated he is a very aggressive doctor, he was comfortable with my choice of not having it.What I had  been told was grade 3 was actually grade 2 for my tumor so that was even better that I had thought. I feel the 3 - 5% chance of chemo helping is not worth the possible side effects. I will deal with whatever ramifications this choice may have, but right now feel very at peace and hopeful that radiation will be enough to put this behind me.I will see the med onc. every 3 mos for labs, have a full CT for a baseline and be watched closely.  I will keep you posted, and thanks again for the responses!

Deb

yellowdoglady

ettasmom,

We all do what we feel is best.  For me, that was 18 weeks of chemo and 7 weeks of radiation.  Did I like it?  No.  Would I do it again?  In a heartbeat.  It improved my chance of living longterm largely, and it wasn't anything anyone hasn't handled in one way or another.  A large annoyance was what it was.  Nothing more.

It is your choice to make, but don't expect that TNBC will sit back if you do.  That beast will kill before it even thinks about you and what you want to do and who you care about.  So think hard and fast about losing your life and leaving folks you love behind before you give up the best thing to keep you here for them.  Unfortunately, that is chemo.  If you go without it, there is nothing more to do.

Take some time to think and process.  I've never heard that chemo had only a 3-5% effect on any TNBC, but I can be educated. 

Luah

Well yellowdog, you jumped in where I didn't dare go. Deb did her research, asked around, met with doctors and seems genuinely at peace with her decision. I respect that, let it lay and wish her well.

But, may I say, I too wonder about that 3-5% efficacy rate for chemo on TN (specifically). Studies show pCR rates in the neoadjuvent environment as being double that for ER/PR+ disease, so that says something about chemo's effect on TN. Personally, my onc told me chemo would cut my risk of recurrence from 50-60% to half that, but then I was grade 3 and stage 2b, so that is a different scenario than Deb's.

Bottom line, we have to be informed patients, advocates for our health, and make the decisions that give us peace.

ettasmom

Hi, Yes, TN is an ugly fast growing deadly thing. I agree. My onc printed out a document based on my age, my dx, rad only, and rad and chemo.  The only difference between the two treatments was at the end of ten years 2 out of 100 women are alive because of the addition of chemo. The chart showed 92 women alive, 5 dead because of cancer and 3 dead of other causes. So, doing chemo added 2% chance of life. My radiologist said my bc had a 20-40% chance or recurrence that would drop to 10% or less with radiology alone. He felt closer to 5% based on my individual status. So I felt like adding chemo could give me that 2 - 5% boost.  However, the side effects could be pretty daunting. Poisoning your entire system and risking the side effects seemed too extreme for what I am dealing with.  Also, I am 50 years old, married 32 years, have 2 grown sons, one married with a new baby granddaughter. I will live my life each day to the fullest in my current healthy state and take each new obstacle as it comes along. I hope the radiology alone is enough, in 92 out of 100 women it is. I plan to be in that 92! I am healthy, active and content with my decision. It is not for everyone, and I asked for help and info so I appreciate those of you who took the time to reply. Some people feel you must do everything possible to beat this, and I respect that. I feel my life has been very blessed, I have done what I needed to do to be comfortable with leaving this earth whenever God sees fit. I don't want to go soon, I want to see my other son married and more grandchildren! But, I am okay if that doesn't happen.  I will do what I feel is the most logical choice for me. Again, thank you all for your support, and best to all of you dealing with this crap.  I wish us all the best, and peace in our decisions.

Deb

renia46

  over a 10 year period , l had 5 cyst lumps removed from my right breast. so when this lump showed up and after another ultrasound said it was a cyst, it was left alone. 6 mths later it was so large the size of a walnut and rock hard, another ultrasound said it was just a simple cyst, so l was left for 4 1/2 mths. it was now the size of an egg, it was removed and l found out l have triple neg breast cancer very aggressive, Stage 3, it was only in the breast l had removed so nodes invoiled. l had to have aggresstive chemo which l deceided l wouldnt do, Its been 2 years now , l have stopped going to the doctors because of the tests they want to do all the time. lm 49 years old, My children have all grown up. l dont know what my future holds but it has been my decision to not have chemo. To all off us with breast cancer l wish you the very best.

yellowdoglady

Ettasmom and Renia46,

We all must make our own choices, and please know that we respect your decisions. 

I am like Luah, but lost the sentinel and 4 other nodes.  With surgery and radiation I was given a 29% chance at being alive and well in 5 years.  That was pretty grim.  With chemo, that jumped to 66%.  So I got angry and I threw the book at it.  Asked for as much as I could take, and took it.  And it wasn't so bad that I couldn't work through most all of it.  Granted, it's nothing I'd recommend for a good time, and it takes more than a minute to bounce back from all of that, but it was a good choice for me.  I have too much I still need and want to do, and too much I put off earlier in life.  I didn't want to be angry or bitter, so I chose to buy the maximum time allowable.  I was told that I pumped it up to a 70-80% chance at being alive and well at 5 years.  So far that has worked well.  At three years from dx, I'm strong again, have my hair and stamina back, and I'm celebrating my first wedding anniversary with my sweetie of 8 years tomorrow.  This man is a certified keeper, so I plan to stick around as long as I can.      

renia46

yellowdoglady, lm so glad to hear that you are doing so well, And l pray you keep going wonderful. For my story l broke my back 12 mths before getting cancer, To help me walk l have two steel rods holding my spine together, Learning to walk again going throught so much pain, Then getting cancer, l was told that one of the chemo drugs would eat my bones away, so for me it would off meant being bed ritten. And in so much pain, l want to enjoy my life not be in bed for what time l had left. l think all off you women that do chemo are hero's and l take my hat off to you. l wish you the best longest life

yellowdoglady

renia46,

I understand.  I broke my back in 1982, and it hurt like hell.  I take a treatment once a year to keep my bones strong that were weakened by cancer treatment.  And back when I was 14 years old, I was crippled from running through a plate glass door.  I got up and learned to walk again and never stopped. That's just who I am.  Almost no one would guess I limp when I am tired except my friends and family who know that happens.

There are drugs to give you back the bone strength that chemo can take from you.  Look into zometa and reclast.  They are the same thing in different doses.

I'm not out to convert you, my friend.  Just promise you won't give up without thinking it all through.  And know we love you no matter what you decide.

  

missrachel1

I was diagnosed with triple negative. My tumor was 6 mm on the ultrasound , but when my lumpectomy was performed tHe residual was less than a 1mm. Most was taken from the core biopsy. I too had clear margins and no node involvement. After my case was presented to the tumor board 50 percent said no chemo and 50 percent said possible chemo. After seeing one of the top cancer specialist in the country, he was the cofounder for the drug herception, he said the risks a chemo far outweighed the benefits of the possible 2 percent edge. He felt that a change in diet and exercise would be just as effective. After the other oncologist heard the opinion, they felt extremely comfortable with his decision. I believe the standard cut off for no chemo is 5 mm. The good news is that radiation is very doable and not bad at all. I retained my normal life...going out to dinner, working and taking care of my three year old.My new diet and exercising really contributed along with acupuncture. I feel geat! People who do not know I have cancer keep making comments on how incredible I look and what is my secret. I simply tell them I had breast cancer this summer which made me Change my old habits. So good does come from this, and luckily being triple neg. We don't have to take tamoxifin. I have two friends who are having a terrible time on this medication and have decided to stop. Follow your gut and do what you feel most comfortable with. Best of luck.

ettasmom

I  have learned from all of this that we all have our own diagnosis to deal with and our own peace of mind to shoot for.  The main thing we all have in common is we all have to do what is best for ourselves, and need the comfort and support of our fellow travelers on this journey.  I think this is a great place for each of us to hear the stories and offer comfort to each other. Thanks to all of you for sharing and good luck to each of us with whatever option we choose. Just know that all of us here are on the same path and wish each other well.

KELL414240

Hi, Sorry you are going through this. It is so scary to think about. It is a very personal decision. My Doctor recommended as well and I did chemo for 6 months. My tumor was only 1.5 cm or 15 mm with no lymph involvement. However, I didn't want to look back and say could have, should have, would have. Chemo is no walk in the park but it's doable. Good luck and thinking of you.

yellowdoglady

Not to skew the decision one way or another, but I scored an A+ on my mammogram yesterday.  I looked at the films lined up and compared to last year when they were clear and nothing has changed at all.  I went home and did the Happy Dance in the street.  It was that good a feeling.  Like winning the lottery.  But it wasn't random.  I worked for it, and that hard work paid off.  My dream of being old and gardening with a long braid down my back is now possible. 

Luah

yellowdog: Congrats on the clear mammo. I'm up for one at the end of the month and hope I'll be doing the happy dance too. Yet, with respect to chemo as a systemic treatment, I never  really saw it as an insurance policy against local recurrence (which is frankly less of a risk for us TNs) but a way to stave off the bigger threat of mets. I do think the threat of mets varies considerably among all of us depending on our stage and pathology, and so too the benefits of chemo.

yellowdoglady

Luah,

Good luck to you!  I'm pretty much like you except dx nearly a year before and I lost 4/14 nodes.

I was told that the prevention for local recurrence is radiation.  It is supposed to sanitize the area.  The role of chemo as I was told  is to clean the blood, so the bad cells won't end up somewhere else.  At least that is the plan.  So far, so good.

So plan a good vacation if you get a good result on the mammo.  Part of this exercise is to understand that you deserve something good too, after all of the worry.  That thing should not confine you or dictate your life if you are well.  If you can manage it, get out and kick up your heels and forget about it for a week!  You will feel much better.  Travel, camp, or hike, or go to museums, or read a book and call for a pizza.  A weekend will do.