HER2 positive stage 1 or 2 diagnosis: What questions to ask?

I have so many questions. Is the cancer lobular, ductal, invasive, in situ? Where in the breast is it? Are any lymph nodes invoved? HER 2 chemo has targeted drugs used with it to attack the cancer cells.
My cancer was invasive lobular stage 2. I had chemo then surgery (mastectomy for me). Since my tumor was still in the removed tissue, I had radiation and additional chemo.
I am 20 years older than your friend and retired. But I know women who are working schedule their chemo at the end of the week (if possible) to allow recovery over the weekend. I was tired and lost all my hair. I had little dietary issues, but they were easily dealt with.
Your friend is lucky to have you. Take notes, ask for clarification of terms and options. There are always choices she can make.

Thank you - I don’t know any of the details. I feel like she doesn’t ask specifics and they are not telling her or she’s not remembering them. I will find out more. She’s been to all of her appointments alone. So I don’t want to be a bulldog and take over but I’m also one that needs to know all the info. She maybe doesn’t so… but she does want me the there to help navigate all the info.

Best of luck for your recovery and remission

Your friend is fortunate to have you! It is very difficult to both be the patient and advocate for yourself. I feel like it is not so much the specific questions you ask as establishing communication. My breast cancer is HER-positive, and complicated in other ways. My husband goes to every appointment with me. He just keeps a binder with all the info. And then types up the notes for me, and the rest of our family.
Try to meet the nurse navigator, who can also answer questions. You will need the basics on the type of tumor, and the suggested course of treatment. But then you can take a breath. Does your friend want a second opinion? Can questions be answered as they come up by e-mail or through the patient portal? One question I would ask is "what percentage of patients can usually complete this course of chemotherapy/immune therapy?" It is good to know that from the start, if possible.
It is so difficult to have to suddenly become an expert on a disease--while having it! People differ a lot as to how much info they need. My husband is a former librarian, so you can bet he is a "one more question" guy. I had to set boundary and tell him--if I say I'm going to the bathroom, that means when I come back NO MORE questions! If you and your friend can--go out for tea or a snack after appointments to process and check-in. Thinking of you both.

I created a ITTT list before my appointment because I didn’t know what the pathology was - so the range of treatments was all over the place. Sometimes doing one therapy may eliminate the need for another, that’s why I look at it as , if I choose one thing what does that mean for the other therapies.

ITTT means If This Then That. If they recommend:
If neoadjuvant therapy (prior to surgery):type, timing, expected outcomes, side effects
If lumpectomy or breast conserving surgery (BCS): timing, expected recovery, will they reconstruct the breast or will there be a divot? Are they offering to adjust the other breast so they match. The Women’s Health and Cancer Rights Act (link below) say they must, and insurance must provide some level of coverage. This is what I had. If a lumpectomy, then there might be radiation and/or hormone therapy.
If mastectomy: reason for the extensive surgery, does it include lymph nodes, what options for reconstruction, timing, recovery. It’s good to get info on reconstruction options because some affect the initial surgery - but I don’t believe you need to make a decision at this appointment. Mull this one over, and get more help from people here on what might be best. If mastectomy, then are there follow up surgeries, or then hormone therapy, or then no radiation?
If radiation: what is expected number of sessions, timing, side effects, recovery, benefits, then does this eliminate need for hormone therapy or chemotherapy?
If chemotherapy: all the same questions as above.
If hormone therapy: same questions.
I took a list like this with me, with enough extra space between questions so I could jot down answers.

Other info to capture: who are all the medical professionals on her care team and how to contact them. Often a nurse or NP/PA is first point of contact when asking questions. Some prefer calls to the department, some prefer messaging thru the electronic health system, and some want direct calls.

I was also a pediatric OT in the schools. Working with pre-schoolers is a very physical task. With almost any surgery, she will able to only lift her arms a limited amount and with very strict weight guidelines. A lumpectomy heals faster than a mastectomy but if radiation is being considered, especially if a lumpectomy is done, then there will be days of fatigue and she would not want to be holding kids in her arms against the radiated area.
A friend of mine chose a mastectomy with no further reconstruction, flat chest, because she was a single mom and depended on her income. She chose the least amount of procedures with the quickest healing. The decision, though, was also based on family cancer history. She expected that she would continue to have recurrences and it was easiest to just remove the breasts.

Your friend may want to consider a work arrangement where she does more of the non-physical work, and others do the lifting. Non-physical: handwriting, visual perceptual therapy, directing adaptations to activities or the environment, writing eval reports, parent communication. If there is no other OT, co-workers like an SLP, PT, psychologist, or diagnostician might be willing to do “arena” evaluations or co-treat to help out. Giving them an idea how long she might need this type assistance might help them agree. Another option, maybe the facility would be willing to hire a contract OT assistant to do the therapy. Your friend could still do evals, with the OTAs help, and oversee therapy. If they hire help, she could offer an extra benefit of developing directions to activities the teachers could use - during the time she can’t lift but is feeling well enough to work. Things like fine motor games, obstacle courses, motor learning activities, visual perceptual motor activities, dancercise, handouts for parents on home activities. It’s a win-win for the facility.
One last suggestion if the facility balks at paying for more staff, offer to go half time with the plan to go full time on a given date (realizing a new development might change this - but, really, you never know if someone is going to be in a major auto accident. Stuff happens.) Then her half of salary could pay for a part time assistant.

Sorry, one more important note. After my biopsy pathology report I wanted to change to a comprehensive cancer center. Mayo Clinic, Memorial Sloan Kettering, MD Anderson are all good. I was closest to MDA, 3.5 hrs away.
MDA said they did not take my insurance 🙁 but suggested I ask my insurance co. I did, and they said they’d cover me, it might be at out-of-network fees. My UHC Medicare advantage coverage has paid for everything so far at in network costs. Wanted to share, in case your friend also is told that there’s no coverage for care.

Staging is important here. Stage 1 for HER positive will be different than Stage 2. If Stage 1, she will likely have surgery, 12 weeks of taxol, radiation, and a year of herceptin. It can be daunting but HER positive is highly treatable. I viewed each phase of my treatment as a victory! The studies show excellent results when treatment is completed.

I am sure this is unusual but my biopsy tissue was HER2+. After a few equivocals and a retest with more cells, my post surgery pathology was proven to be HER2-.

My tumor was DCIS, and mixed invasive ductal and lobular, so heterogeneous. One doc said the DCIS was likely the reason for the HER2+ result with biopsy.

Record the appointments with your phone. That way you can focus on getting your questions answered. Write out questions before appointments. You can send a copy of recording to your friend. And she can send a copy to whomever she wants to have it.

Which dr do you see at MDA? I go there as well.