How do I prepare for first appointments after breast cancer diagnosis?

Those first few weeks after diagnosis can feel overwhelming with so many appointments and decisions ahead. Bringing a list of questions, having someone attend appointments with you for support and note-taking, and asking about your pathology report details are great starting points for feeling more prepared. The expert session you found sounds like it covers exactly what many patients find most helpful during this phase - understanding your specific diagnosis and mapping out the treatment timeline ahead.

I knew nothing when first diagnosed - Stage 1 Grade 3 IDC. Thank goodness I was contacted by my nurse navigator (once I chose a doctor, a navigator was assigned) who settled me down and gave me some clarity about what was to come. The BC center I worked with did the rest - consults with the surgeon, oncologist, and radiologist all in one day. Having those appts put things in perspective. DO NO CONSULT THE INTERNET. IT IS NOT YOUR FRIEND OR DOCTOR. If you can, keep your wits about you. I am cancer free and moving forward in my life one day at a time.

Peggy. You were fortunate. I found the nurse navigator and much of the medical staff were “cookie cutter.” (I am in greater NYC.) As if there is a textbook with a formula for dealing with us. The internet has opened my mind to all options. I am a proponent of informed decision making.

Hey Sandra - totally understand. Looking at the internet only made me more anxious and worried. Since I knew nothing about BC, the info given to me by my team was eyeopening for me. But as you say, our cases are not always the same and shouldn’t be treated as such. Wishing you all the best and total healing. There is a journey after the treatment as well.

You too Peggy!

I was a stage 0 at 44 years of age. I didn’t take it as seriously as I should have. At that time the oncologist decided to do nothing. At the appointment I was trying to be really proactive and wanted double mastectomies. But my oncologist said -you seem really healthy all you need to do is have mammograms 1-2 times a year. I walked out of there thinking great. Fast forward 8 years and I had full blown stage 3c metastatic breast cancer. Exact spot where the stage 0 was at- left breast. Now I was looking mastectomies, 5 months chemo, radiation, Zometa and hormone blocker. Another 5 years go by and I have a grapefruit size tumor in my sacrum. 10*pain in my lower back. Placed on ibrance, Zometa and Letrozole. 2 1/2 years go by and finally they find out I have an autoimmune disorder called CVID. My body does not make plasma. Plasma helps to make immunoglobulins which mark cancer cells for your t-cells to fight. Which is genetic. So way back when I had a 0 stage that was really do to my autoimmune disorder. That went undiagnosed when my oncologist thought I would be fine. The question is why did my body make a bad cell and body did not fight it off 18 years ago. I am now NED. Only on Letrozole and Xembify (plasma). But it has been a long 18 years. So really make sure you do not have something secondary going on with your immune system.

I to was recently diagnosed with DCIS Insitu and had genetic testing done. I found out that I am a Brca1 carrier so I just under went a double mastectomy and I am going to be having my ovaries and fallopian tubes removed.

My stage 0 cancer at biopsy was found to be stage 1 Triple Negative when I had my lumpectomy. Good luck with your treatment decisions.

I would prefer the mastectomy for piece of mind . He did a lumpectomy and said he “got all the cancer but m a wreck and want them gone

Kelli M. It is a big decision. A dear friend just had a double mastectomy end of May and has been struggling with recovery. Please look at all options.

A double mastectomy is a big decision and my reason was due to my Brca1 positive result. I already had a previous lumpectomy on my left breast when I was 18 that was benign and had a biopsy on my left breast again a year ago.

Sandra .. I’m so sorry for your friend . I have thought and prayed about it and I’m such a nervous person I feel like my whole life would just be waiting for it to come back ..

Jill T. Totally get it! Not easy to be put into making these decisions. But here we are. Nothing is easy. Prayers that you are doing well.