TNBC - Chemo or No Chemo?

allyoucantiff

Hi, I'm 29. Just got hit with a TNBC, Grade 2, Stage 1.

I'm operating in 2 days to have it removed also check the lymph nodes. The doctors are suggesting CHEMO but I'm very adamantly against the idea of poisoning my body. 

Anyone refused chemo treatment? Many friends' moms/aunts chose no chemo and instead switched to a very strict diet regimen and they're alive and well 15 + years later with no cancer. These are encouraging examples but my family members are not very convinced and believe these instances are outliers. 

Let me know your thoughts. I'm right in between, to be honest between chemo or not. There are many cases for and many cases against. I'm a very positive person and highly energetic. I'm very afraid that CHEMO is going to absolutely kill my desire to live and in turn, would ultimately cause my death. 

wrenn

sorry you are faced with this decision at such a young age.  I am 67 so it is different for me but i only had one dose of chemo and had to stop because it caused diverticulitis and i am regretting having had the one dose.  The combination of the chemo and cipro for the diverticulitis has given  me horrible neuropathy.

My daughter had done some research and didn't think i should have chemo but my sisters and the establishment convinced me to try it.

Many people do ok with it so i am only speaking for myself. 

Make sure you read reliable articles regarding outcomes either way and talk to people whose judgement you trust.

Don't rush into it until you have all the answers and feel comfortable with your decision.  Wishing you the very best. Tske care of yourself.

MomMom

Ally,  So sorry for your diagnosis.  It's tough at any age, but especially hard for someone so young.  My heart goes out to you.  Good luck on your surgery and perhaps you won't be faced with chemo.  However, please know if it is recommended, and it frequently is for TN because it's so terribly aggressive, it is completely doable.  Some ladies have awful side effects, but some, like me have a relatively easy time of it.  I've had 4 rounds of DD AC and so far, and I've completed 8 of the 12 weekly rounds of Taxol - to be followed by 6 1/2 weeks of radiation.  Whew.  It's a long haul, but I've never been nauseated (they give you lots of drugs to prevent it and it's effective for many like me).  I had less energy on the AC than on the Taxol, but I've exercised pretty strenuously every day since I've been in treatment.  I think the exercise has served me well.  Hang in there.  This is the most stressful time before you have a treatment plan in place.  As my breast surgeon told me, at this point you feel like you're in free fall.  You will feel much more in control and better when your treatment plan is in place.  Hang in there and know that many are here to support you with any decisions you make.

jarris77

I was diagnosed with triple negative breast cancer last year (56 years old at the time) and did have chemo. Thankfully, I was one of the lucky ones that had hardly any side effects. I suppose I could have refused chemo but I wanted to do everything I could to hopefully reduce the chance of recurrence. At least if it happens, I'll know I've done everything I can to prevent it and won't look back and say maybe I should have done chemo. If I hadn't been triple negative, my MO may not have recommended that I have chemo. But as he explained it, it's the only option I had since I wouldn't have the option of the hormonal treatments available to the hormone positive cancer patients.  As everyone knows, there are no guarantees either way and some people want to avoid chemo. You have to do what is right for you. I hope you make a decision you are happy with. Good luck.

Luah

Ally: So sorry you have to join us here, and at such a young age.  Except for extremely small tumours or contra-indications, chemo is recommended for TN. It is the only (conventional and medically proven) systemic treatment for TN, as our tumours do not respond to hormonal therapies. Try to take it one step at a time, ask lots of questions of your docs, and check back in here for support. It's a journey, lots of agonizing decisions, and we're with you. 

lintrollerderby

allyoucantiff:

I'm so sorry to see your news. I can understand. I was diagnosed with TNBC at age 34 in 2011 and was so scared of chemo. I didn't fully commit until right before I started. I knew I didn't have many options--us Triple Negatives don't, but I was terrified. Chemo is much easier than I was expecting. It's still hard, don't get me wrong, but it was not the horrific experience I had imagined. 

I'm not against alternatives at all, but your situation is likely different than those of the aunts and moms of your friends. First, you're likely much younger, which usually indicates a more aggressive cancer. You don't mention their cancer stats, but it's more likely than not that they had hormone receptor positive breast cancer. Many of those ladies do not need chemo. Because of your age and the Triple Negative status, you should absolutely speak with a genetic counselor as your situation is a red flag for a BRCA mutation. I had no family history, but still carry a BRCA1 mutation. With BRCA1 mutations, it is a genetic problem--a person in that situation would only have one working copy of the BRCA gene that helps repair DNA damage, instead of two working copies like most people. If something happens to the good copy, the gene can't control DNA damage, and a tumor forms. All this to say, if you do have a BRCA mutation, it is even less likely that a change in lifestyle will make much of a difference. 

I know it's scary. If we can answer any questions for you, please let us know.

Best of luck.

BikerLee

a lot of factors go into their recommendations for or against chemo... including tumor size and lymph node status.  i would highly recommend waiting until you have your pathology results before making any decision about chemo.

the size of the tumor.... there is a threshold size, below which chemo is not commonly recommended... and for triple negative, that size is quite small...  if your tumor is smaller than a centimeter in diameter, then it's possible you'd receive no recommendation for chemo. if your tumor is larger than a centimeter in diameter, then chemo is the "norm" for triple negative.

at the end of the day, you're the one who needs to live with the decision...  so ask lots of questions about risk of recurrence depending on chemo or no chemo... etc...  

also, consider seeking a second opinion. if both opinions match, then you can feel some level of confidence in the treatment plan.  you know what i mean?

for me - it was a total no brainer. my tumor was pretty big... definitely above that threshold size.  my risk of recurrence without chemo was something like 1/3...  i had a complete pathological response with chemotherapy, which means my risk of recurrence now looks like 1/20....  for me, that difference feels huge, and i feel i made the right choice going with chemo.  did it suck? yeah. but it was manageable.  i continued working... continued parenting...  my better half definitely did more during those several months...  but it really was surprisingly manageable.  and now, i feel my health is once again very good.  i'm an athlete, and i'm racing bikes again.  so... that's cool.  

one bug i'll put into your ear...  if you have plans for birth children, please ask questions about fertility and chemo. you may want to seek information about harvesting eggs etc...  if that's in your future plans.  chemo can throw a person into premature ovarian failure (young person's menopause - hit me over ten years early)...  

sorry you have to deal with this.  definitely sucks....

lintrollerderby

The NCCN treatment guidelines are that chemo should be considered for Triple Negative Stage I tumors that are 0.51 mm - 1.0 cm. And recommended for those above 1.0 cm. The threshold I've most often seen here offered by various MOs is 0.5 mm. Since we don't know the OP's stats, I'm guessing she noticed her lump or had other symptoms because of her age and the very low likelihood that this tumor was found on a screening mammogram of any sort. Going on that assumption and the swift nature of TNBC, I'm guessing her tumor was probably over the size that would put her in the gray area. 

I totally agree that it's each person's decision to make; however, I think given her age of 29 and the fact that it's TNBC (which inherently has limited treatment options), I think she'd be hard-pressed to find an MO that didn't strongly recommend chemo. That said, I do recommend more than one opinion if there's any question.

I absolutely advocate for the OP to see a genetic counselor to pursue BRCA testing (at least, and possibly other genetic testing). A positive result would have wide-reaching implications for her future. Also, if there is a BRCA mutation at work here, research is starting to indicate that a platinum-based chemo such as carboplatin or cisplatin is even more beneficial. 

BrandyB

You should find a doctor that you trust and then do what they recommend. You don't get a second chance to fight this cancer. If you have a recurrence, it's a much grimmer scenario. Fight well the first time. You have a whole life ahead of you. It's worth the fight and honestly,you won't even remember much of the chemo after a couple of years have passed. 

lintrollerderby

I just moved from Boynton Beach last year. Small world.