CALLING ALL STAGE I SISTERS

HI everyone - I am new to your group, just found you yesterday.  I met with my onco yesterday for the first time and my head is swimming.  I thought he would tell me flat out you need chemo or you don't but what I got was a bunch of stats, a list of side effects and told to think about it.  It seems like from what he said my risk of reoccurance is the same if I do tamoxofin or chemo and that there is no added benefit from doing both. I then called someone I know who is a radiology onco who told me the same thing and said that chemo is not going to have any greater effect on my odds. He seemed to advise not to do it becuase of the short and more importantly long term SE.  I am overwhelmed and want to make the right decision.  I don't want someone to tell me 2 years from now that I've got a brain tumor because I didn't make the right treatment choice.  Any advise or suggestions?

boatergirl - my first thought was the same as janetinvirginia, what was your oncotype.  I had the same anxiety-ridden decision to make.  I had a stage 1, grade 2 (intermediate) tumor with ended up with an intermediate oncotype.  I got 4 different onc opinions in my desperate hope that I would be able to reach a conclusion or actually, that someone would tell me what the heck to do.  The first said you really need to do this, the second said you shouldn't do this, I would not have my wife or family do it under these circumstances, the third was 60/40 for doing and the last was 50/50.  Ultimately, you already have found the question that will lead you to the right answer for you - can you handle risk and can you handle whatever comes down the road in two years.  The fact is, anything could come down the road in two years but, yup, its just the but.  I am doing chemo, CMF, as insurance, however I can say that after round two I began to wonder if the benefit was really enough.  Not that CMF is so very bad, but just is it worth it.  So that is where I am, is it worth it.  I will never really know, none of us will.

I don't think anyone can say for sure that the cancer recurred because they did or didn't do chemo.  Many people who've gotten chemo still have the cancer recur, and it's a known fact that chemo benefits a very small percentage of patients who take it.  That's why it's nice to have the oncotype test - while no guarantee, at least it's another piece to factor into the decision.  Doing chemo carries a whole host of risks aside from just the unpleasant immediate side effects, and the notion of hitting the cancer with all they've got seems a bit overkill if you are in a low risk group when you consider the potential long term harm that chemo can cause.  But, it's a very personal decision that needs to be weighed carefully taking all risks into careful consideration.  Personally, I can't look at chemo as just insurance - if there's strong evidence that one may clearly gain a benefit then I would never say no, but otherwise you are putting yourself at risk for other issues.  Luckily my oncotype score was low enough to have a clear answer, BUT...no one ever knows for sure what's enough so you just have to make a decision that you are comfortable enough to live with.

boategirl our diag is similar but I am IDC and grade 1.  My oncotype score was a 23 which is in the middle of intermedite.  My med onc advised against me doing chemo as well and to do radiation and tamoxifen.  He felt that the long term SE would be worse on me than the small margin of benefit it would give me.  MY BS and Rad Onc also agreed with this.  If you feel really good with your doc's listen to them and read everything you can.  I was not sure if I was making the right decision but in the end decided to do what the docs recommended.  Now I feel good about my decision and will start rads hopefully next week.  I have started excersing more and eating better which I know will help my odds and I already feel better.

Thanks everyone for you input and advice.  You are all kind of confirming what my gut is telling me.  They had not done the oncotype test yet - cause they have only had to ability to do it for 2 months - now I have to wait another 2 weeks - arrgh!  But if it comes back low, which my friend who is a radiology onco thinks it will it really doesn't sound like the little benefit of chemo is worth the risk.  There is so much wisdom and support here with all of you!  Thank you all for being so willing to share - it really does help me feel like I am not alone in this! 

WOW, so many new sisters. Damn this beast!

Can I third that!!!!

BarbaraA Love your avatar - Looks like you were having fun!

boatergrl - chemo targets fast growing cells so the other factor to look at is the Mitotic score component (how fast the cells are dividing) of your Grade score.  This will be a 1,2 or 3.  1 means slow growing and 3 is fast growing. My score was a 1 and my onc said there was a 1% positive benefit but a 3% negative benefit from chemo for me because of possible SEs.  I am a worrier and chose a bmx when the surgeon recommended lumpectomy, and my tumour size was 2cm so well over that magic <1cm level. I decided against chemo mainly because of the real possibility of permanent damage to my body when there really was little gain but also because my cancer cells were very strongly hormone driven so HT was going to be as effective as chemo as 'insurance' against recurrance, which may be the case for you too.

Sheila - ditto.  It is heart wrenching to see so many new ladies but then I am glad they have found this site and will have support and help from everyone here rather than trying to get through this terrible time alone.

Gotta go to tennis - fantastic day here.

edited because some of the post was missing - there now

I am lying here, tired but I cannot sleep. Because I had a reaction to the contrast last time, I have to take a Steroid 13 hours prior, 7 hours prior (thats 1am) and 1 hour prior to the MRI, plus benedryl and valium an1 hour prior.  I won't know if I am coming or going, up or down...tomorrow is gonna be fun!!!

Welcome, Newbies, you're in the right place.

Praying for all the tests being done this week and those waiting for results!

boatergirl--from what you've posted as your DX, hoping the onc appt goes well.  We have very similar DX.

o2bhealthy--so glad you won't have to face more treatment.  Compared to what you've already been through the thyroid is almost a no-brainer!

Hi onestep!!!

I love how you all can post the nicest pics!

Those still concerned about bras:  check out the other thread on here

Bras 101: The Great Post-Exchange Debate.

I was told by my PS to wear an underwire.  The biggest thing about bras after recon is to make sure they are encapsulated and not able to migrate anywhere until the implant has settled into the pocket.  It can take months to do this.

I am praying, too. Lots of prayers for you, Michelle.