Chemo or No Chemo ......

Hi Marie - this is confusing stuff, isn't it?  Tami makes a good point about sorting out the mastectomy first and I second what she said.  There's another thread in this forum called Any early stage women not take chemo, or something like that where a lot of people have weighed in. 

I wouldn't call it laming out if you don't do chemo.  The fact is that with node negative at least, more women don't benefit from chemo than do benefit from it.  Chemo seems like a pretty rough thing to me, and if you don't have to go through it why would you?  Just to give you some comparison info, here is what the oncologist told me before she even mentioned the Oncotype test:  out of 100 women with my age, grade and ER status, in 10 years:

With no chemo and no tamoxifen: 82 would NOT have a distant recurrance, and 18 would. 

If all 100 just took tamoxifen, 89 would not have a distant recurrance and 11 would anyway.

If all 100 just did chemo, 88 would not have a distant recurrance and 12 would anyway.

If all 100 did chemo and tamoxifien, 92 would not have a distant recurrence, and 8 would anyway.

So by her stats, the difference between tamox only and tamox+chemo was that only 3 women would benefit from adding the chemo.  I asked her if she really thought a 3% chance of benefit was worth it, and she said "If you're one of those three women, it is."  So that seems to be their perspective - no matter how few people will be helped, everyone should take the chemo.   I think it is safe to not take chemo for the majority of people, because in my scenario 82% didn't even need it, and 8% have a distant recurrance anyway - but the problem has been that they said they didn't have a way to find out who those few were who would benefit.  That's where the Oncotype comes in and I decided to make my decision based on that, rather than the much more generic risk typing that the doctor wanted to go with initially.   I guess for now I decided I would rather regret not doing chemo than regret doing it.

There's also another gene test that is supposed to be available this summer called Breast Bioclassifier - I'm keeping an eye out for that because I want to have that done when it comes out too, just to get some backup of my Oncotype results.  I suppose that's going overboard but I think the more detail you can get on your particular case the better.

Everyone has a different viewpoint, so two people with the same stats could take two different routes - you just have to go with your instinct on what is right for you.  I think if you feel like you were talked into your decision and it doesn't turn out the way you thought it would, that's where the real regrets come from.  Good luck!  Eileen

Marie,  In your heart do you already know what you want? Which way are you leaning right now, what decision could you live with, that's what it comes down to, I think.  With a grade 2 tumor that is 2 cm you are in a position to benefit from chemo according to the traditional clinical criteria, even with negative nodes.  I guess you have to decide how much trust you put in the OncotypeDX number and the criteria used in the trial.

As Eileen's post pointed out, doing chemo is not a guarantee that the cancer won't come back, and really only changes that likelihood by a couple of percentage points.  Her stats also point out that if you are only going to do one systemic treatment, hormone treatment is the more effective route.

Which scenario would you be able to better deal with:  not doing chemo now, enjoying good health for a period of time, having the cancer return eventually and fighting it then from a position of strength with everything you've got at that point or doing the chemo now, dealing with months of issues from the chemo including lowered immunity, potentially doing permanent cardiac and nerve damage to your body, losing your hair and possibly your nails, and then have the cancer still come back?

For me, I chose good health up front.  I lost a significant amount of weight (which according to my breast surgeon lowered my risk at least as much as doing chemo), exercise much more regularly, lowered my stress levels, and increased the amount of sleep I get each night.  In other words, I made me a priority, and am taking good care of myself for the first time in years.  It's been over a year.  I take my tamoxifen faithfully, and I've had a couple of lumps that have shown up as my breasts have healed, but the biopsies were clear.  So far, so good.  I know absolutely that I made the right choice for me.

You have to make the choice that's right for you.  If you think that the Oncotype score will help you be more comfortable with your decision, then it is worth waiting for, but if you already know which way will make you able to face the future head on, then go for it and don't look back. 

I'm willing to risk not doing chemo at this point. I'm already screwed up from the ALND and my poor body doesn't know what hit it.

What does an onconotype test look like? Numbers? Letters? Scores?

Marie ~  I can add one bit of info' that might be helpful.  There is a study that showed no difference in outcome when starting chemo 1, 2 or 3 months after your last surgery.  There has been no research beyond 3 months.  So, if you don't have a mast, that would give you another month or so to get back Oncotype test results.  If you have a mast, then you technically would have even more time to decide on chemo or not.  If I was in your  position, I would probably wait for the Oncotype test results, although I'm not familiar with exactly what commiting to the Tailor-X study in order to have the test means, so my opinion isn't based on what that commitment would mean re. your tx. 

makingway ~  The Oncotype-Dx test gives a woman a single numerical score (e.g. 22) that predicts her chances of a recurrence based on a number of factors about her individual disease.  From what I've observed here, the results are not always as obvious as they might seem.  Sometimes women with apparently low risk factors have a higher risk than you might assume, and vice-versa.  If you go to the very top bar on this page (the informational section), within that section there's a search box and you can search for a full description.       Deanna

I am 52.  I will know the results for the Oncotype DX in two weeks too.  I have also had no lymph node involvement, margins clear, ER/PR +, HER -, Grade 1, Stage 1 (<1cm).  My oncologist said that studies have shown that Tamoxifen works better without Chemo and will leave me with the option.  If my results from the Oncotype DX do come back high, we will do the chemo.  But, the chemo my onc told me is so 'low' that I will not lose my hair.  That for me is a plus.  Please ask your oncologist more info on your chemo treatment and the affects - if you are unsure.  We need to know everything we need to know.  I had a bil. mastectomy because of my past history in LCIS 11 years ago and every year I was a nervous-wreck - 'was'.  

Marie,

Basically, joining the trial is good.  They will keep much closer eyes on you, do more check-up with you for 5 - 7 years and see how the treatment works for you, which means the pathologists would care more about trial patients.   I don't want to take chemo but my hubby strongly advise me to join the trial even it would bring me to chemo

karenz01 - thanks for posting what your doctors' opinions were on the Oncotype.   We individually can only go to a limited number of doctors for opinions, and if you search the net for info you will find articles both validating and questioning Oncotype.  I find it really helpful to hear what other doctors said, especially if they're the one of "top" oncs! 

Wishing good luck to you with your results!

I know what you are going through.  I was diagnosed in Feb, had lumpectomy in March and reincision 10 days later to get a clear margin.  I also have LCIS in both breasts and hyperplasia.  I'm older than you, 57, and even though my oncotype was a whopping 19, my oncologist recommended against chemo, said it would only lower my chances of recurrance by a couple of points.  I had 25 radiation treatments and am now taking Femara with zero side affects.  I would wait for an oncotype number, because if you can avoid chemo, I guess that would be good.  Lots of luck and my thoughts are with you.  Janna

Marie, your score is considered low.  Have you looked at the Quality of Life and Longevity thread under Moving Beyond Cancer?     

I had a very high score, and chose not to do chemo.  The more I learn about it, its lack of effectiveness against breast cancer, its devastating side effects, potential to cause other cancers and potential for long term damage, the more certain I am that I made the correct choice, at least for myself.

Some recent studies have questioned whether the chemo drugs themselves are effective at all against breast cancer, or if it is the chemo induced reduction in hormone levels that is actually at work.

You don't have to do everything to get rid of the cancer forever, as long as you do the right things.  You have already had surgery, and are planning more extensive surgery to limit your risk.  You will be on Tamoxifen for 5 years. 

You have a lot of years to live with the risk of cancer coming back, but that also means you have a lot of years to live with the after effects of chemo.  The risk of anyone in the general population developing breast cancer is currently between 1 in 8 and 1 in 7, or about 11% to 12%.  You have to question the validity of someone telling you that a treatment will cause your future risk to be lower than that of a woman who has never been diagnosed with breast cancer. 

Whichever way you decide to go, I hope that you make a decision you can live peacefully with for a very long time. 

Thanks Marie,

 I understand the emotionally charged part.  I am 95% OK with the chemo first I will have and the other 5% will just have to be faith in the doctors I have found.  I am hoping I will adjust to the new normal quickly and come to peace with this whole thing soon.  I am staying positive and looking forward but, as you probably know, the new reality has a way of sneaking up on you and taking you for a ride. I start chemo next Wednesday.  Great!/the horror!!-the new normal...

Have a good vacation, hope you have lots of distraction. I go back to work Monday.