MO with 2 different opinions on chemo

Hi

I don't know the difference between the two tests-- have not heard of endo-predict. In the end, on these decisions, it is ultimately up to you. How well will you sleep at night if you do or do not chemo? Are you someone who worries alot about things that may be unlikely to happen but could still happen? I think slowing down is a good idea- and between tamoxifen and ovarian suppression you will be doing alot. Maybe a 3rd opinion just to help you get to a settled place. For what it is worth, I had 2.5 cm lumpectomy, no nodes- mid-range on oncotype- I was young and had young children and very healthy-so I did 4 rounds of chemo- the tailor x trial results recently confirmed that for my data I made the right decision-- but I also knew that I would worry that I had not done enough- and I don't do that now because I did all I could. It was challenging but not impossible and I was able to work through most of it-- of course, everyone reacts differently.

But everyone is different and there are people who can skip chemo and not worry about it--- it is somewhat of a data driven decision. I can tell you that I was treated at Dana Farber and if they had said don't do chemo, I would have skipped it! I also did an AI and lupron for ovarian suppression for 3 years since I was pre-meno. best of luck-these are hard decisions.

skv0123, momof2kids gave good advice. I also am not familiar with EndoPredict, so can't comment on that.

For what it's worth, here is my story. I share it to underscore the point that basically bc is a total crap shoot, and ultimately you have to do what lets you sleep at night. The oncologists really don't have the answers--for the most part, they are grasping at straws as much as the patients are. Especially in cases like PILC in premenopausal women, b/c the trials mainly included IDC patients, most of whom were post-meno. In my opinion, the majority of the clinical trial data is useless in a PILC pre-meno case.

2007 Age 38. 2.7 cm PILC, neg nodes. CAF x6, lump, rads. Started Tamoxifen. Lots of PLCIS left over in the boob. Oncotype 18.

2015 Local recurrence in lumpectomy scar line, while still on Tamoxifen. MX with immediate LD flap reconstruction. The surgery has left me in chronic pain and basically has ruined my life. Two oncs were split on whether I should do chemo for the local recurrence. Only one study was focused on chemo for local recurrences, and each onc interpreted the data differently. As I figured there weren't a lot of PILC premeno women in this study, I opted for no chemo, thinking I'd like to save it for down the road. My mom died of bc, so I knew that it was important to preserve treatment options as much as possible.

I had to refuse OS/AI after the local recurrence due to the side effects on top of my horrific pain and tightness from the LD flap. I did go ahead and do a revision surgery in 2016, with a lift on the "good" side.

Jan 2018 The lift masked a new 8 cm primary, with node involvement. Once it was caught, I immediately went on neoadjuvant Taxotere/Cytoxan. Mammoprint high risk.

Midway through chemo, I had to switch to Taxol/Cytoxan, due to side effects. Around that time, I was dizzy, so onc ordered a brain MRI. Surprise, surprise, brain mets.

June 2018 So now I'm Stage IV. Stopped chemo, canceled upcoming mx, and went on Ibrance/Faslodex/OS (started on Zoladex, recently switched to Lupron). I have been stable since then (as far as I know--ILC is so hard to image).

So my point just goes back to what momof2kids said--do what makes you feel comfortable. There is no perfect answer to any of the treatment choices, and quite frankly, for the most part, the cancer is just going to do what the cancer is going to do.

Skyv0123- I'm glad you picked the choice that feels right for you!!

JRNJ- Good luck with choosing when the time comes. There are so many hair options (cold capping, nice wigs, partial wigs), that will hopefully make you feel better if you choose chemo. I'm cold capping and while my hair is thinning, I'm 6 weeks into TC and have a full head of hair!