Anyone Stage 1 w/ no treatment after BMX

JRae

My tumor was a 2mm tubular carcinoma.   I'm stage 1, grade 1.   BMX with immediate reconstruction.  Exchange planned for December.  

Due to the fact, that not enough tissue remained (after fixing to slides), they were not able to determine hormone status of the tumor.  Also were unable to run the Oncotype.   Given that, my oncologist cannot tell me if I would benefit from tamoxifen.   He is suggesting that I proceed with no additional treatment other than follow-up exams at this time.   Anyone else out there, who is Stage 1 but not receiving additional treatment?   It's kinda driving me a bit crazy.   I want to do everything I can BUT have no information to move forward with.

Susie123

bump

lago

It sounds to me you should get a second opinion. You would sleep better if you did.

JRae

Not sure what I'd be getting a 2nd opinion on.  My pathology was reviewed by my clinic network's people and referred on to Mayo Clinic for their review.  They weren't able to determine hormone status because "no residual invasive tumor available for testing in paraffin block."  My oncologist thought since the oncotype test examines DNA, that they might be able to determine it.

 Either way, my oncologist has pointed out that according to the NCCN Practice Guidelines in Onocology (www.nccn.org) that "no adjuvant therapy" is recommended for tubular tumors smaller than 1cm (negative nodes) regardless of ER/PR positive or negative.

I'm thinking that a 2nd opinion would be one oncologist's gut feeling for another.   Neither can be based on science since a crucial piece of information is unavailable.

Part of me is thrilled not do tamoxifen and its side effects.  The other part wonders have we done enough.  Sad thing--there isn't an answer.

kira1234

JRae, Did you have a biopsy before the BMX? I had the biopsy, and it showed ER/PR in that report. I went and looked at the NCCN practice guidelines, and it seems you're correct. That doesn't mean if ER/PR+ no need for tamoxifen.

Fighter_34

Second opinion my dear.....

MarieKelly

 "Either way, my oncologist has pointed out that according to the NCCN Practice Guidelines in Onocology (http://www.nccn.org/) that "no adjuvant therapy" is recommended for tubular tumors smaller than 1cm (negative nodes) regardless of ER/PR positive or negative."

JRae, you don't need a 2nd opinion. Your oncologist gave you good advice. The tumor was tiny and a pure tubular BC has an excellent prognosis - especally when it's that small.  As you've noted, the NCCN doesn't recommend anything other than surgery for that size pure tubular and in having had a bilateral mastectomy, you've already gone to the extreme with the recommended treatment. You don't need anything else. With such an excellent prognosis, any adjuvant therapy would only leave you open to the potential risks of such therapy while gaining virtually nothing in potential benefit. Not a good idea.

And for others reading this who might have a tubular diagnosis. the the NCCN guidelines actually say that, not only is no adjuvant therapy recommended for a tumor that small, but that any pure tubular diagnosis that is found to be either hormone receptor negative or Her 2+, the diagnosis of tubular should be questioned. Which is a polite way of saying if it's really hormone receptor negative or Her2+ then the pathologist screwed up in making a pure tubular diagnosis.

JRae

MarieKelly - thanks for boost of confidence, it was starting to seem like I was the only one to be treated only with surgery.  Still trying to wrap my brain and gut around it!

 Kira1234:  I have 3 path reports but none include information on hormone status. 

karenjaninaz

I cannot tolerate Arimidex or Tamoxifen. My onco said I was "low risk", Have no ovaries, small tumors and double MX, neg nodes. Age 68. I tried Tamox-- lowered dose and would have tried only 5 mgm but was unable to walk from frequent leg pain.

CrazyKitties

Good for you with the tubular BC, it is not the same as invasive ductal carcinoma! Live! I am happy for you---enjoy your life without adjuvent therapy, it sucks!