BMX No rads No Chemo

hi bhlri, im in the same situation. my oncotype was ordered and i was told no chemo or rads after my bmx. i have to say im quite nervous not doing what a lot of other women seem to do. regardless, even if i had wanted to - and i didnt have desire to do either chemo or rads -  none of my doctors even considered it in my case. It is hard for me to understand how they can be so sure, but apparently, they were convinced i didn't need anything other than the surgery. i wish i met more women who were in my situation who are a long way into their survivorship, but it seems like foregoing chemo is a new trend following the oncotype which is new. the problem i am having is most survivors i hear that didnt have chemo or rads had a tumor under 1 cm, like .5 cm and i know those tumors regardless of type do very, very well. mine was over 1 cm and i have been having a harder time hearing stories of women who had tumors over a cm who didnt need chemo/rads and who are long term survivors now. It used to be that every one over 1 cm got chemo. I am just worried there is not enough evidence supporting that larger tumors can now skip chemo and we are the experimental class or something. If anyone has further information for me, please share ...

msShelly my onc told me when trying to convince me to do chemo/hormone therapy (like I really needed convincing) that 40% of the women my age with my diagnosis who only do surgery are still alive and NED in 10 years. Granted that wasn't a high enough statistic for me but my point is that even some more advanced stages may not need chemo. They just don't know. Even though my nodes were negative I had to do chemo because I was HER2+. Herceptin being the treatment for HER2 works better with chemo. Had I not been HER2+ I would have also been a candidate for oncotype test and possibly given a pass.

I also know a gal who was stage IV from the start. She has been on Tamoxifen only for 3 years and doing well. Hormone therapy is a very powerful tool!

Getting all this treatment like chemo and/or rads isn't SE free. Some of us have permanent damage like nueropathy, heart issues, chemo induced lymphedema etc. Some of us suffer with chemo brain. I'm not saying I regret doing chemo but I do have some residual SE that I know have to live with. This is why oncs want to prescribe chemo unless you need it. And even if you do all this treatment there is no guarantee that it will work.

Bhlri,

Your oncotype results will help you and your team make the final decision but bear in mind, that doing more is not always doing better. Chemo and rads are serious treatments with potential for serious side effects. I think that , if needed, they are great but again, more is not better in all cases. Moreover, no decision that you make is a guarantee of anything. We all wish it was but medical science is just not there yet. The good news is that with your stage and grade the chances are strongly in your favor for doing very, very well. If you have faith and confidence in your medical team, then go with their recommendations. No one can foresee the future with bc but there is no value in overtreatment. Why go through something so major for virtually no payoff? Wishing you the best.

Caryn

Iago, my surgeon made the same argument-- that 70 percent for stage 1 need no further treatment following surgery, not even hormonal. He said there is evidence supporting this. I wish I knew what the evidence was specifically, but i do trust him. He was very good.

I also completely understand the overtreatment argument. I do worry sometimes that the medicine is not working or that the SNB failed for some reason and didnt detect all the sentinel nodes or a positive node, but i know the risk of this is pretty low. Its hard with no further treatments, because it is a worry that if a sentinel or positive node was missed than only the hormonal is treating it, when radiation and chemo might have been more beneficial. I guess it will always be a fear though that will come back once in a while and I just have to learn to deal with it. I have always hated numbers and i wish treatment had moved beyond the numbers game a little bit. i hope someday that it will. 

Iago, that is great to hear your nodes were negative. I am sorry for the LE though. I have been doing pretty good, but the worry does creep around every so often. Hopefully it will go away more once I get a little past this year. I have the BMX too and the risk is definitely too low to worry about for the other breast. That is one thing I am pretty happy about because I know any recurrence in the other breast can be found on a breast exam and should be visible this time around versus having to detect it with a mammo.

Trying to decide the order of things. First of all, my diagnosis was Jan. 2013: IDC, well differentiated, no in-situ ER/PR Positive, Her2 Negative. As for the tumor size (no straight answer on this, but I was told it was small in size, perhaps 0.2 or 0.7cm). Not sure what BMX means (still trying to digest so much info). Should a person have the onco-test done first and then decide on the course of treatment? I had a lumpectomy (left side of breast closest to arm pit) lymph nodes were tested-came back negative. Had a discussion with radiation oncologist about radiation treatment (33) but I'm scared to death about the simulation test and the radiation itself (laying flat on a table arms above my head, being still and all) I could BARELY get thru the MRI of the breast I had to do in January. To say I am claustrophic is putting it mildly. I have syncope (sterotactic) in otherwords I get dizzy laying down flat-I just can't do it. So, if I have the onco test done, if the result is low % can I opt out of radiation and do some other type of treatment(other than radiation or chemo)? What if I just choose not to do anything at all? Is that a crazy question to ask? I'm just trying to put this all in order in my mind in order to figure out what to do next. Thanks all and GOD BLESS EVERYONE.

MsShelly, what I hear you saying is that you don't want to regret your decision later. And that makes you feel anxious. Let me share my situation in hopes it may help. My diagnosis was similar to yours in 2008. I chose lumpectomy/radiation (vrsecond, I have claustrophobia too, but didn't mind radiation and in fact enjoyed it. Less confining than a tanning bad and it's only a couple of minutes.) I declined chemo and even tamoxifen. My son was young. My cancer recurred in 2012. I was shocked! I had passed my 3-yr cancerversary and wasn't even thinking about cancer. It devastated me. But did I have regrets? Did I wish I had done chemo? NO! Not for a second. And I wouldn't do things differently with a second chance. My son is older now, I still haven't done any chemo and I still have my breasts. I hope that you develop peace with your decisions too. As time passes, and your battle becomes a distant memory, make sure you get PET or CT scans regularly. The other shocker for me was that my recurrence was not in my other breast. I always assumed a recurrence would be in my breast and believed that if my mammos were clear, I was fine.