Surgeon says ...

Halah

It all seemed so positive to me. But after reading some of the posts here, I'm wondering if my surgeon was giving me too much good news too fast. I had three tumors: .6cm IDC, 2.8cm DCIS, and 1.6cm DCIS. He said we got clean margins and I am ER+/PR+ but the HER2 is still not known. Oh an no node involvement. I've not had the oncotype dx test and will see my medical onco on Sept 30th.

He told me I wouldn't need radiation or chemo. Was he telling me this a little prematurely? Is there enough information to know this yet?

lago

That's not his call. My BS suggested I would probably need radiation but never said definitively. I just wanted to know because of reconstruction. When I met with the oncologist yesterday she said radiation was still a question and I needed to meet with the radiation oncologist to get that answer. She said it wasn't her call and wouldn't commit.

Even today when I metwith my PS (1st fill yay!) he said there have been so many changes regarding the criteria for radiation that he can't keep up anymore. This is why they have specialists.

But he might be right. IDC is very small, DCIS is contained and you have no nodes. I think there is a very good chance he is correc. I bet they will want you to do some aromatase inhibitor drugs for 5 years.

Halah

Hi lago, I hope you are right. But the thread that has me all riled up is below. Until I read that, I thought the next step would be tamoxifen. But now my thinking is I don't even know what stage I am at, my HER2 status, or the value of the oncotype dx test. 

http://community.breastcancer.org/forum/108/topic/757873 

rockwell_girl

My computer is acting up so I couldn't get the link to work... You sound a lot like me ( but even better  ) and I just needed the mastectomy and tomoxifin for 5years.  I was er+ and pr+ her2 neg and no nodes.  I had 6 clusters of DCIS and 1.1cm of IDC my onco type test was low about 16 so no checmo for me.  I would suggest the onco type test to know for sure.  I hope you come in with a low score.  If you had a mastectomy you won't need radiation.  If you had a lumpectomy you most likely will I would think...

CoolBreeze

My mother had a small IDC and had only a mastectomy.  No chemo and rads.  That was two years ago. 

rockwell_girl

just caught your BMX at bottom of post.  usually they used to say no checmo for tumors under 1cm but now with onco type test this can tell you for sure.  Your odds of not needing chemo is good : )

I'm about 100% sure you won't need radiation

Halah

Thanks Sandy. So I guess I still need to know what my HER2 status is and it looks like I am a candidate for the oncotype dx test. My only question now is will I need chemo. I'm hoping not. It's difficult not to worry.

Ann, glad to hear your mother is doing well.

BrokenHeart

WinterStorm, my Mother says if she had it to do all over again she would have had chemo and pushed for it at no matter what stage.   She feels that not having it was her biggest mistake.  I'm not trying to scare you, but I find it hard to see so many women given no chemo only to end up more advanced later.   If you were my Mother I would want you to have 'some' chemo and definately the tamoxifen.   Please be safe. ~Zeana xox

flash

I would definitely speak to an oncologist.  Chemo is their area of expertise, not the surgeons.  There are some other factors that would need to be taken account before a decision is made.  For example, you had multifocal, which can change some of the stats.  I definitely hope you don't have to do chemo, but I would hate to see you make the decision without consulting another doc.  It's too big a decision.

good luck

lago

Winter an oncologist might decide you should be on an aromatase inhibitor instead of tamoxifen since you are post menopause. My oncologist is going to putting me on an aromatase inhibitor because she says chemo will put me in menopause (although I think I might have just started anyway) and my periods aren't coming back.

Then again they might have you on tamoxifen for a few years and switch you to an aromatase inhibitor so you can be on it longer.

But please see an oncologists! Your surgeon shouldn't be deciding this. Also you need an oncologist to monitor you when you are on this treatment not a surgeon.

Did you ever find out about your HER2 status? If you are positive I'm sure they will recommend chemo and 1 year of Herceptin. You only have about a 20-25% of it being positive.

Halah

With some of the wonderful ladies here, we figured out I have a grade 1 tumor, and the new pathology report says that the HER2 is HER2-. So all of that is good. I do see my med onco this coming Thursday the 30th.

I had so much going on in that breast. I had one invasive and two non-invasive tumors, and atypical lobular hyperplasia. My "healthy" breast also had atypical lobular hyperplasia. I remember seeing the image of my breast within a week's time. It went to a small area of a little bit of calcification to a completely cloudy breast. But if I am only grade 1 I am not sure how this is possible.

Anyways, I do have more info since I posted this thread. Thanks for your input. I'll definitely consider chemo. Not sure about chemo, but the SE of tamoxifen and arimidex would put me at greater risk of other things that I already have going on. So I fear the drugs. Perhaps chemo for a shorter length of time and no drugs? Hmmm...

Again, thanks.

Mindy

lago

Mindy they may have other drugs to manage the SE of the hormone suppression therapy. I'm like the "poster child" for possibly getting osteoporosis. My mom had it (now on hormone therapy that reversed it), I'm smalled boned, diagnosed with low vitamin D last year (taking supplement), white and I used to smoke (quit 5 years ago although not heavy smoker).

arimidex can defiantly affect the bones.

They are going to do a bone density test on me soon. I'm sure they will give me Boniva or some other drug if they find my bones are an issue. I'm hoping the exercising I do will counter all the "poster child" risks I have. I don't like the risk of no the hormone suppression therapy for me.

 Talk to your doctor about all your concerns. Write them down and just go down the list.

rockwell_girl

whooo hoooo her2- that's great news

I hope they are doing the onco type test and your score comes in low which means no chemo

ask your doctor about the Zometa drug that came out.  I heard it's suppose to be just as good as chemo.  I have several friends that are taking it.  I think it's something they get every 3 months.

msmpatty

Winter - Your news is good!   You will know a lot more about your options after meeting with your Onc this week.  But I do want to suggest that you don't dismiss the hormonal therapies without learning more from your Onc.   Tamox, Femara and the rest have proven to be extremely effective in preventing recurrence and mets over the long term.   Patty