Please Help! I don't know which way to go!

NisaVilla

First time posting. Very new to diagnosis. Please let me know if I need to post more/less info.



Just had bilateral mastectomy with 3 nodes removed for IDC. Had 2 large and other < 2 cm multiple tumors. The 3 nodes were negative. I was told I am Stage 2B. Age 56. ER+PR+ and Her negative.



My question is ...what treatment have you been receiving for Stage 2B? Two different oncologists have recommended 2 very different treatments. One doc represents a university center, another a practice in the community. Both popular names in the cancer field in my area. I have no idea what to do!



Thank you so much for any feedback!

fredntan

what are the two treatments?

Susie123

I see you were node negative and ER+. Did you have the Oncotype dx test? That may help decide which treatment plan is appropriate.

bluepearl

Stage 2B would usually require chemo...especially if there is lymphvascular invasion and high Ki67. So many factors go into this decision. Susie123 is right and possibly a 3rd opinion altho I would favor the university center where they often conduct research too. John Hopkins can give another opinion too. In the US, oncotypeDX is usually covered; in Canada, you pay for it so often the Ki67 is the poor man's oncotypedx. Sadly. Tumor size is also important. Glad you are node negative and hormone +!!!!

NatsFan

Hi Nisa - so sorry you have to join us here, but you're very smart to be asking questions.  Doctors are wonderful, but in the end we have to understand our own treatments and be our own advocates.

I would ask each of the oncologists why they are recommending what they are, and let them know what the other onc has recommended.  You may also want to get a third consult, and if you're in the US, you should look for an NCI-designated cancer center if your "university center" isn't NCI-designated or similar.  Here's a list of NCI cancer centers:  http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

It seems unusual to get two completely different treatment plans, so you really need to question your oncs about why their recommendations are so different.  If either of them is unwilling to answer questions or give you good reasons for recommending their plan, then don't go to that onc.  You'll have a relationship with that onc for years and you are quite literally putting your life in that onc's hands, so you need to have someone with whom you feel fully confident and with whom you can discuss anything comfortably.  Oncs who don't communicate well or have a "I'm the doctor and I don't have to explain it to you" are usually not the greatest to work with.  You and your medical staff are a team, but you are the head of that team.  If a doctor doesn't want to explain recommendations to you or otherwise minimizes your input, then remove that doctor from your team and find another one. 

Good luck and keep asking questions!!!

NisaVilla

Thank you so much everyone for responding to my post! I am learning my way in this forum.



My head is still spinning from the sudden diagnosis and now dealing with the dilemma of choosing between treatments. The NCI-site says NO chemo, only 10 years of hormonal treatment. They say chemo only adds 2 percent protection, not worth the chemo risks. The community onco says 6 rounds of TC followed by 10 years of hormonal treatment.



My dilemma is that 2 percent seems like a large number to me. I want to feel I did everything I could. I feel I owe my young kids that extra small percentage. And the stress of thinking daily that I did not do enough will in the end be bad for my mental health, and possibly my physical health. But NCI center does not offer a choice. It is what they recommend or no treatment. I am going back and forth and must make a decision next week. OncotypeDX is in progress and due on Wednesday. it is predicted to be in the low side.



Is there anyone here with large tumors (had 4) who is stage 2b, and did NOT do chemo?



Health to each of you!