What to ask at your first appointment with the surgeon?

Conroyungerecht

I was diagnosed on Oct 19th with IDC. I do not have my pathology report but I do remember words like invaisive, high grade, poorly defined. While still in shock - we have no history of breast cancer in the family - I am taking some solace in the fact this is the most common type of bc!

I have my first meeting with the surgeon on Thursday and I was wondering if those who have gone before me have a question they wished they had asked.

Ingerp

Breast surgeons are good at going over pathology reports. Remember to bring pen and paper to jot down notes. He’ll lay out your options, so you might start to think about lumpectomy vs. mastectomy. That’s often the first decision you have to make. Don’t feel like you have to fully grasp/process everything at this initial meeting. It takes a while. Best of luck.

Lula73

what Ingerp said + do not let them push you to make a decision that day. You have some time to decide what’s best for you. Come back here and let us know how it went🍀

Conroyungerecht

Thank you!

Conroyungerecht

Thank you. I will let you know how it goes. Just picked up the lab results so I feel like I am armed with all the info and I am ready to understand what it all means!

Molly

ElaineTherese

If your lab results say that you are triple positive (ER+/PR+/HER2+) or triple negative (ER-/PR-/HER2-), ask to be referred to a medical oncologist as soon as possible. Most BC patients with those kind of cancers end up doing chemo. Your oncologist may recommend chemo before or after surgery. ((Hugs))

Salamandra

This sounds similar to me. The wait was so hard! The meeting with the surgeon was a huge relief.

I had a friend come with me to the appointment, and another friend with medical background listen in on phone. She took tons of notes and that was helpful. But my surgeon's office was also really outstanding with being available for follow up questions and communication. So maybe that would be a question - how can you ask what you remember later.

Also, I wish I'd asked how I would find out about the MRI results (I got the test done later that day). Because the doctor called and my heart almost stopped before I realized she was just calling to tell me the results. Related, I guess, whether there's any other diagnostics they want you to do before moving forward.

Moderators

Salamandra, we welcome you warmly to our site, and greatly appreciate you sharing your experiences.

Conroyungerecht

Thanks for the advice. I will add further diagnostics to my list. Happily my mom is a nurse and she is coming with me. And my husband is very rational!! He will be able to hear it all.

Conroyungerecht

I just got the labs and if I understand correctly, I am ET and PR negative and HER2 positive. Not sure what that all means but I am sure I will find out!! Thanks for the advice.

Dani444

Salamandra, What a great idea to have someone listen in on the phone! That is definitely a piece of advice I wish I would have taken from here for that first appointment. There is so much information they give. I did take the advice on here to make a binder to keep everything organized. I had my calander, a place for notes and questions for each doctor I was going to be seeing. Also folders for Medical records, insurance statements, bills and reciepts. I also added a mileage tracker and out of pocket expense tracker for tax purposes. I also went to hobby lobby and found some cheerful papers and stickers they have for planners. I found it nice to be able to open it an jot down questions as they came to me. All the best to you Conroyungerecht , let us know how it all goes. You will feel better as a plan of treatment comes together.

ElaineTherese

Hi!

If you are HER2+, you should ask your surgeon for a referral to a medical oncologist. Breast cancer with an overexpression of the HER2 protein is aggressive and is typically treated with chemo and targeted therapies like Herceptin and Perjeta. Your oncologist may recommend chemo before or after surgery. Good luck!

Leatherette

My dx is similar to yours, Conroy. I think if your tumor is larger, they’d have you do chemo before surgery, and if it’s small, chemo after surgery, like me. Best to you during this fraught time.

I’m a year out from chemo, had recon surgery 4 mos. ago, and life is getting close to normal again. You can do this.

L.

Conroyungerecht

Elaine, thanks for your advice. I will be sure to ask when and how to see an oncologist. I have to say that I have not paid much to different types of doctors in the past so I orgiinally believed the surgeon I am going to see today is also an oncologist. So much to learn - and on a topic I really do not want to have to learn about. I have done so much reading the last 4 days!!

Conroyungerecht

Leatherette,

It is so good to hear good news! I am glad you are doing well and your life is getting back to normal. I am looking forward to sharing news like that too! I was hoping that not being triple negative I could skip the chemo... But then I am still hoping the surgeon looks at all of my reports and tells me the pathologist is a moron and I have an inflamed cyst. I appreciate the reality check and that I need to keep in mind chemo is still possible. My mom also told me that the surgeon is not going to tell me that the pathologist is a moron. I told her she was harshing my mellow. Hope springs eternal!

Conroyungerecht

The appointment was intense! Alas, my tiny hope that the diagnosis was false was dashed. I have a 4.1 cm tumor, it is IDC, I am HER2 + and PR/ER -. My hopes were dashed over and over again! I thought the PR/ER- would be a good thing - no. I thought 4.1 cm was small - no. Uggh. So it is an aggressive cancer that will not respond to some of the best drugs. But there was a tiny silver lining with all of the new protocols for HER2+.

My surgeon was fabulous. He recommended I see a specific oncologist who is "the best" and has a super busy schedule. The surgeon even left our appointment to go find him, introduce him to me, and set up an appointment for Monday during his lunch. So I feel like I am in great hands!

The plan is MRI, lymphnode surgical biopsies, then chemo. From there we will see if I respond to the HER2+ protocols.

Thanks for everyone's support!

Molly

ElaineTherese

Glad to hear that you feel you're in good hands. Having a good team will make completing your treatment plan easier. Yes, I remember my first meetings with my doctors and how it feels to learn that things are worse than expected. My tumor was originally supposed to be 3.9 cm, but after my MRI, my surgeon told me that it was 5 cm. with a possible satellite nearby. Then a node tested positive.... I thought the news would never get better! ((Hugs))

As a fellow HER2+ BC patient, I'll just say that treatment is a marathon and not a sprint. Don't think about the fact that it may last 1.5 years. Just take a step at a time and the next thing you know, you'll be done.

Conroyungerecht

Elaine,

Thanks for the advice! I know I will survive. I just need to get through the treatments. And having run a marathon before, I am good with the one day at a time and only worrying about the things that I can control. Doing my best to let go of the things I cannot!

Molly

Anonymous

I'd for sure ask your surgeon how many surgeries of this type they've done, and what the outcomes were.