<1 cm - Stage 1a - Team

p.s. - My tumors were both "well differentiated"...and NOT the aggressive type.

YET:  I had 2 separate cancers in BOTH breasts--bilateral BC (which is apparently sorta rare w/ your 1st cancer diagnosis), even though they were similar in size/grade--everything.

POINT: IF I didn't do a bilateral MX, we never would've caught the other tumor in the L breast! Because I had such dense breasts, neither tumor showed up on ANY imaging! I also chose double MX because I knew that I did NOT want radiation (other choice being another lumpectomy to get better margins & radiation) for a variety of reasons, and that bilateral MX would give me a better chance of symmetry in reconstruction...as would no prior radiation...

Hope that helps explain my personal decision to have BOTH breasts removed.

Violet - I had a prophylactic bilateral mastectomy, and despite all the screening they found a 1.1 cm IDC. Thank goodness I insisted on the PBMX! Tamoxifen was recommended for me, but the first time I tried it I had such terrible side effects I stopped it. My onco score was good, so the tamoxifen made about a 2% difference. I am now a year out and I decided to try it again, this time 12 days out I am feeling great. Somehow I think it is acting as a HRT for me. Also my onco put me on Effexor for depression and hot flashes. It makes me sleep like a baby. One of the reasons I decided to try Tamox again, beyond the small benefit towards recurrance, is that I still have heavy periods. Many women have much lighter or nonexistent periods on tamox. I had an endometrial ablation 8 years ago and it cut my periods down about 30%, but they are still very heavy. Also I think I am very close to menopause and my hormones are raging, so strangely enough I think the Tamox has made me feel better because I think it actually increases your estrogen, though it blocks it from any sneaky cancer cells.

Hi Violet_1, my dx is similar to yours except I'm stage 1b because my tumor was .9 mm (still under 1cm), other than that our dx and surgeries are the same.  I am awaiting the results of my oncotypedx test.  At first my breast surgeon said the same thing, that she thought they probably wouldn't even ask me to take Tamoxifen given my final pathology results but then on my next visit, apparently she forgot she said that and was talking like of course I would be taking Tamoxifen.  I too had an aunt die at the age of 29 of uterine cancer and after all I have been seeing about the side effects of Tamoxifen I'm not convinced it is the right choice for me.  I did the adjuvent on-line and at my age Tamoxifen only improves my odds of not getting reocurrence by 4%  I figure good diet, exercise and losing 20 pounds gives me a good portion of that same percentage with GOOD side effects.  I don't regret having a bmx at all.  Like other women here have posted I keep getting very positive remarks for choosing bmx.  I really wasn't a good candidate for lumpectomy anyway because it was going to be hard to get good margins given the shape and size of what had to be removed and I really didn't want to get rads either.  Since we had bmx and I haven't found any studies that confirm that Tamoxifen helps reduce distant mets, only local reocurrence, I just don't understand why it is even being suggested.  I know a bmx doesn't 100% prevent local reocurrence but the chances are so small compared to the risks of Tamoxifen.  I am leaning towards keeping a healthier lifestyle as I mentioned unless of course my oncotype dx score comes back unexpected crazy high.  For me, my faith keeps me from freaking out about that unknown percentage and I'm just not going to be willing to throw a carcinogen (Tamoxifen) into my system for such a small percentage of possible prevention.  I will post again when I get my oncotypedx score because I find it really interesting to see what other women's results were and maybe mine will help someone else playing the waiting game.  Be well ladies.

Hi everyone,

My tumor was 2mm and they could not do the Oncotest.  Has anyone had a 2mm tumor & HAD the oncotest?

Sharon

4My3Kids,

Thanks, I will have to speak to my ON again about the oncotest.  May I ask  did they reccommend arimidex because I was told by many ON it was my decision, because of the small size and bilateral Mastectomy.  Also why did you have your ovaries removed, was it other problems or just preventitive reasons.

Thanks,

Sharon

Had lumpectomy for Stage1b, grade 1 IDC, ER+/PR-/HER-. When back for better margins and found separate tumor Stage 1b, grade 2 IDC, ER+/PR+/Her-. Since the second tumor had not shown on repeated mammos and ultrasounds, I decided on MX to make sure - and because I would never trust the mammo again. The other breast appeared clear on all tests. No oncotype was done. I skipped rads due to good margins on the MX and chemo was never considered. I'm still considering prophy on the left, but not happy with the thought of possible nerve damage or LE.

Yes!

I spoke with Genomic Health today (the company that does Oncotype DX) test and no, it is not correct to assume my risk is 18% of reocurrence without Tamoxifen.  She said it would probably be higher than 9% but she couldn't say how much.  The reason given is the Oncotype DX test was based on a study of women who ALL used Tamoxifen.  So it really is more for someone to see if chemo would benefit them, but can't be used to decide on taking Tamoxifen or not.  Another thing I found interesting was that vascular invasion was used towards obtaining the score (gathered from the pathology report) but all persons with vascular invasion are grouped together, instead of diferrentiating between "focally present" (minimal invasion), moderate invasion and extensive invasion.  The only study that has confirmed that vascular invasion makes a definitive difference was in persons with extensive invasion found.  The study found that minimal invasion has the same outcome as patients with no invasion.  Since I had "focally present" invasion I believe my score should be lower than what it was, 15.  My estrogen levels are positive but on the low end of positive so to me that means someone 100% estrogen receptive would take Tamoxifen to lower their estrogen....but I'm already there.  I am perimenopausal.  My biggest concern is developing distant mets and I have looked extensively and I cannot find a definitive study that Tamoxifen prevents distant mets.  I even found a study that confirmed it doesn't, that Aroma Inhibitors were better for that.  So Oncotype confirmed for me I don't need chemo, which my doctors were pretty sure of already.  Unfortunately it is not helping me at all make a decision about Tamoxifen.

Regarding Tamoxifen and distant recurrence, look no further than the recently published Atlas study:

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61963-1/abstract

FLF

see my private response, but if its financially possible yes- a low score will give you piece of mind  and a higher score well let you know that you need to be vigilant with hormonals.... for the next 10 years.

CR

VR- I really thought it was interesting when the top MO told me that tami would only give me an extra half of a percent against re-occurance. 98.5 (without)vs 99 with for distant re-occurance. The chance of a local re-occurance in the scar line is higher  but caught early curable.  I realize that the onco score why (score of 1).

Thoughts?

VR- hope you are well.

CR 

Voraciousre..thank you.  Since mine was 2mm they told me they could not do the test and the use of Tamoxifien was my decision.  I am wondering if I should ask again for the test, although they keep telling me it is to small.  What to do?

Sharon

Thanks Voraciousre..I am going to keep trying to get the test.  Someone posted they had it done for a 2mm spot.  I am going to the Block Center this month just to see what they have to say, and will ask the ON there to test it.  Also, my internist.  I would at least like to try and see it it could be tested.

Sharon