Is it normal to feel lost after a breast cancer diagnosis?

Hi Emily. Sorry you are going through this. Based on your imaging and initial biopsy you probably have more info. Size of the cancer, grade, hormone receptor and her 2 receptor. Do you know that info? MRI will help to see if additional areas not seen on mammography. And true final stage may change after definitive surgery and lymph node biopsy. I saw my med onc before I went for surgery to help me figure out what to do. The breast surgeon can also provide you with a lot of info.

I was only told it was 6mm. Hoping thats a quick removal. Never told me anything about grade, hormone or receptors Oncology said surgery which is sometime in may then I would meet my doctor & then plan for chemo. I had 4 mammograms, ultrasound, biopsy so far. I was told to wait for surgeon to review on (5/5 ) everything and see if it’s bigger than I was told ? I don’t know none of this makes sense or makes me less anxious. My gram had mastectomy & I had to give blood to do dna test for doctor to determine my lumpectomy vs mastectomy odds.

Good to hear it’s small. Receptors were probably done or maybe pending. The breast surgeon should be able to tell you. Those will help determine your medical management …and when you have final path your oncotype may also help with your medical management options. Genetics testing important so glad you already have that. I know the process is scary especially when just thrown into it.

So sorry to hear you are going through this. When I was diagnosed my biopsy results were given to me by the breast surgeon, she discussed my options for lumpectomy or mastectomy she showed me images from mri and explained biopsy results. She then scheduled my surgery that’s what I decided to do. She then gave me therapist number to meet with and physical therapist number to meet with. The dockets I have worked with have been amazing so have the nurses. After surgery for double mastectomy, I met with oncologist to discuss results from biopsy and discuss treatment options. I did feel like everything happened so fast, I had 3 appointments in one week. But I definitely think the doctor who gave you results could have had a little bit of compassion and referred you to surgeon and oncologist.

Thank you. I wish I had the experience you did. I was told I had cancer then nothing. I had to call & make appointments and push to get referrals, authorizations myself to get doctor appointments.

I too felt like the continuity of care was sorely lacking. I have been figuring it out myself. It’s a journey. DCIS Stage 0 lumpectomy clean edges 4mm. Had an Oconotype test and I have decided on Partial breast radiation. 5 sessions, one week. Erring on the side of caution. Starting radiation in a couple of weeks.

Sending prayers you heal soon.

Sorry you are going through this! I was diagnosed with DCIS stage 0, had a lumpectomy and now I am starting radiation soon. All of my treatment was well coordinated. My breast surgeon is the one who worked through everything with me, and made a recommendation for both the medical and radiation oncologists. If possible, see if you can log into the hospital system that has your records and you can probably get some information by looking at your records. If I understand you correctly, you have not met with the breast surgeon yet. That is definitely where I would start. If you don’t have a surgeon, ask friends for a recommendation. In my case, the breast surgeon gave me a pretty good idea as to what to expect afterwards as far as radiation and ongoing meds. I did not meet with the other doctors until after my surgery. The breast surgeon said they usually want to wait until after you have had the surgery, so they have a better idea what you’re dealing with.

Barbara. I am in the same place. I too am starting radiation in 2 weeks. I really like my oncologist. My surgeon was great. I do wonder if I wasn’t on top of my own care, looking at my records, reading on sites like this, would I have made the same informed decisions?

Ask for all your reports from mammograms, ultrasounds, MRI, and biopsy. Pathology report from biopsy should have grade and info on hormone receptors. You are your best advocate!

I don’t understand either why you’d see a surgeon first and the answer was “that’s the way we do it”. I didn’t accept that and went to a breast cancer oncologist that wasn’t affiliated with the big hospital. Best decision I could have made. He listened and out me set ease.

Was it your internist who made the diagnosis? Did you have a biopsy? The radiologist who did my biopsy recommended a breast surgeon and she have me the option of a lumpectomy or mastectomy. Her office also set up an MRI prior to surgery. Since it was small I chose a lumpectomy. Her office also set up an appointment with the radiation oncologist and medical oncologist as well as physical therapy (in case lymph nodes were involved) I had to have two surgeries because the surgeon didn’t get clean margins the first time. That was one month after the first surgery. She said I was a good candidate for brachytherapy (they put in a catheter to insert radiation seeds) so I had that put in about 5 weeks after the second lumpectomy. I had a bleed that took half an hour to cauterize and stop the bleeding and the catheter had to be removed and I had to be sutured. The sutures were put in too tight and when I went to have them removed (9 days later which the surgeon advised) they were imbedded so Lydocane needed to remove. I had to wait for this incision to heal and am finally going to get proton therapy beginning Thursday. 5 treatments. It is recommended to start radiation no more than 120 days after surgery. I’m at 75 days from the second and successful lumpectomy. You need to find a surgeon who will handle everything for you but this usually needs to be someone associated with an oncology group. I hope all goes well for you. Thus is quite a journey! 🙏🏻

Hi everyone. I met with the surgeon. He was absolutely amazing. He went through every test. I’ve had explained everything to my family. Was there to answer any questions. They found another tumor when the last MRI was done. No one said anything. The surgeon was great. He apologized that I should not have any kind of good experience since being diagnosed.

Second biopsy tomorrow. My clips decided to migrate so another one before surgery Tuesday . I will be having two laminectomy. He doesn’t believe I will need chemo, which is wonderful so far. It’s looking at radiation for 30 days. ER+HER 2 he told me. Medical oncologist appt set for mid June. 

I cannot believe your doctor didn't recommend a surgeon! It is so very overwhelming, I am so sorry you are navigating this on your own I would suggest being your best advocate and keep calling the office for info

Emily, I am so sorry. I was diagnosed on May 21st.  I have a nurse navigator that is setting up all my appointments and I can reach out to at any time time. I’m not sure what area you are in but if you are in the Pennsylvania area, please consider Penn medicine or Foxx chase.  I am praying that you get the support you need. This breaks my heart. It’s hard enough to get the diagnosis. Please stay in touch. Let us know how you’re doing. God bless you!

I'm sorry you had to do all that.

After receiving the news an appointment was made immediately with the oncologist and then the surgeon they consulted with each other my surgeon provided me with a plan of how we would proceed from that point. I was told what to expect from there. Sounds to me Like someone dropped the ball. Maybe get a second opinion.

Feeling lost and overwhelmed after a cancer diagnosis is completely normal, and many people experience this same confusion about the process and timing of appointments. The uncertainty about staging and treatment plans before surgery can feel incredibly scary, but this sequence of steps - MRI, surgery, then detailed staging and oncology meetings - is actually a standard approach that helps doctors gather the most complete information to create the best treatment plan. While waiting for answers is one of the hardest parts, connecting with others in this community who have walked this path can provide valuable support and perspective during this challenging time.