Inconsistent Information - Confused

Hi!

Can you ask your oncologist to have your tumor undergo the Oncotype Test? That test might give you a better indication of whether or not chemo would be beneficial in your case. Yes, treatment protocols are changing and oncologists have become more selective about recommending chemo. I'm sorry your oncologist has been all over the map. Good luck!

Hi,

I was mid 40's when diagnosed. 1.4 cm, low grade, no nodes, er and pr positive. My onc said at first i should do chemo due to younger age. However, he then changed his mind and said he was not sure. I ended up not doing chemo. I am now 10 years out, with a local recurrence last year. For now NED. I don't know if this helps, but i do remember how difficult the decison was for me at the time. xoxo

I believe you should have the Oncotype test. My doctor suggested chemo might be necessary because of my micromet. After getting the results of the Oncotype we discovered that my survival would actually be lower with chemo vs. without chemo. Best to have the info. before going forward, in my opinion.

Hi Operamom. I agree with BrooksideVT on the process, so you'll have to follow up to be sure the Oncotype DX test gets ordered promptly, and do know that sometimes insurance coverage can be an issue. So good for your doctor for ordering it.

In my case, my doctor was pretty sure it would be radiation and not chemo for me given my ER and PR+ scores (both above 95 percent); my low Ki-67 score (10); and my age (59). I did not have any lymph node involvement. So yes, some doctors do have a gut sense of whether chemo will do more harm than good based on other factors, but it's definitely helpful to have the Oncotype score to confirm it.

In cases where it is a close call, the oncologist usually asks for the opinion of the hospital's standing "tumor board," which is a group of doctors who meet regularly to provide a check on each other's recommendations. And/or, you could go to a completely different hospital to get a second opinion.

Hope that helps. This stage is pretty confusing, but you have 2-3 weeks to figure it out and ultimately you may find out chemo won't really do very much.

Hi Operamom- just want to share my experience. During BMX, I had 1 of 4 sentinel nodes show micromets. Final pathology showed 2 of 4 actually had
micromets. My MO ordered Oncotype based on this. While waiting for Oncotype results I did not feel comfortable not knowing the status of my axillary nodes. Both my MO and surgeon said that odds would be slim any axillary nodes would be effected with just micromets. I still was uneasy not knowing so I asked
my surgeon to go back in and do axillary node dissection. Took out an additional 14 nodes and surprise surprise 2 of the 14 were fully positive even moreso than sentinel nodes. My MO called me basically in a panic to give me results and said regardless of what Oncotype says I'm having chemo. So he set me up for AC+T. I had port placement and was ready to begin when he got Oncotype back. It was a 3 which was very low. Even though Oncotype only relevant for 1-3 nodes involved (and I had 4 even though two had micromets) he was encouraged by the score. He changed my chemo regime from AC-T to TC four rounds. He said the heart risk from the A drug now outweighed any benefit. He took my case to tumor board and they said at this point they had to recommend the chemo because of the four nodes. Also now that there were four nodes involved I also had radiation. My MO still says he might've overtreated me but until the studies show that Oncotype relevant for four nodes, he had to recommend some chemo. I was ok with it and I got through it and the radiation. I feel like I threw all I could at it. And if I did not go back in for axillary node dissection, my Oncotype would still have been a 3 and I would've skipped both chemo and radiation and my two positive nodes would still be there and I would not have known and I would've been sent on my way with Tamoxifen and no treatment at all.