Who plots my treatment plan?

Hi!

Does your hospital have a tumor board? Often, that body makes recommendations. My tumor board recommended chemo first because my lump was large, HER2+, and high grade (Grade 3). So my surgeon ended up passing me off to my medical oncologist for chemo before I got my lumpectomy. After my lumpectomy, I was passed off to my radiation oncologist for radiation.

Do you know whether or not you are ER+, PR+, or HER2+? That information will have a big impact on your treatment plan. If you have the most common form of breast cancer (ER+/PR+/HER2-), your care team will probably recommend surgery first and send a sample of your lump to get the Oncotype test, which helps determine whether or not the benefits of chemo outweigh the risk.

If your cancer is low-grade, it might not be a good candidate for chemo before surgery. (Chemo works best for cancer cells that are high grade [rapidly dividing].) I'd assume that you'd begin with surgery unless you are HER2+ or triple negative. Good luck!

Hi abc54321,

I was diagnosed via biopsy with ER+, PR+, HER2- IDC. My next step was meeting with the surgical oncologist aka... breast surgeon. He ordered my MRI and genetic testing. Based upon those results, I next met with the Plastic Surgeon. Picked a date and had my bilateral mastectomy with tissue expanders. I then met with my medical oncologist who ordered my oncotype test. After those results came back, 9 days later, I began taking Anastrozole.

Good luck and keep us posted!

I met with an MO even before the surgeon - because he was a doc who had treated a friend & I knew him AND trusted him. He and my GYN gave me a couple of references for a surgeon & I met with two. He and the Breast surgeon I picked worked together, then I added a plastic surgeon. They did take my recurrence to a 'tumor board' and all worked together.

Edited to say - but the medical oncologist drove the bus.

abc, radiation is typically later in the treatment series, after any surgery.

Also, you mention no family history -- only a small portion of breast cancer patients have any family history of breast cancer. According to the Komen site,

"Most women with breast cancer don't have a family history of the disease.

About 13-16 percent of women diagnosed have a first-degree female relative (mother, sister or daughter) with breast cancer [137].

A woman who has a first-degree female relative with breast cancer has about twice the risk of a woman without this family history [137-141]. If she has more than one first-degree female relative with a history of breast cancer, her risk is about 2-4 times higher [137-139]."

https://ww5.komen.org/BreastCancer/FamilyHistoryofBreastOvarianorProstateCancer.html

I the end, we ourselves chart treatment, after hearing recommendations from docs.

Since you are hormone positive and HER2 negative, you will probably have an Oncotype Dx test, a genomic test (different from genetic test) that gives you a recurrence risk score and also tells you whether your tumor will benefit from chemo.

You will probably have hormonal therapy regardless of what else you do.

Since it is low grade, you may have a low score, though 30% of grade 3's have a low score and some low grade cancers have high scores.

The size of your tumor will also be taken into account.

Do you have a ki67%? Some labs feel that this is unreliable but others use it to assess proliferation.

We saw an oncologist and surgeon on the same day, radiation doc after surgery.

Grade 1 is the best, so take heart in that. My surgeon did the excisional biopsy (lumpectomy) and dx me then. He then referred me to my MO, and she worked with me, giving recommendations for chemo followed by BMX or radiation. I did both (BMX and rads), since I was high risk given the + lymph nodes. I did my own research and found that dose-dense chemo AC (every other week) had a bit higher chance of reducing any chance of recurrence--and I knew I could handle chemo every other week instead of every three-so I requested that and got it from my MO. Plus, it shortened overall chemo tx time.

Good luck!

Claire in AZ

abc- if you're looking for the "good news" in your report, that would be your grade 1 status (typically the slowest growing and most "normal looking cells" of the 3 grades of cancer) and the mention of it maybe being a pure mucinous carcinoma. This is a rare form of IDC, but it's considered less aggressive and responds well to treatment

https://www.breastcancer.org/symptoms/types/mucino...

Your MO should refer you to a radiology oncologist (only if it's needed), but again, that doesnt come til after surgery, not before. Neoadjuvant chemo wouldn't be typical in a hormone positive HER2 negative tumor, but a larger tumor in a small breast could make surgical margins tight. A chest MRI will better reveal if the tumor is close to your chest wall in a way that would benefit from neoadjuvant chemo, and your surgeon would be the one making that call.

You will need that MRI and other scans to make sure there aren't additional areas of cancer in lymph nodes or other areas, but so far it sounds like your cancer is non aggressive and will respond well and be very treatable, which is great news in terms of cancer news.

Two things truly decide your care.

1. Double blind clinical trials.

2. You

Standard-of-care is what has been proven as best by double blind trials. This is what determines the treatments we are offered, based on how we present, all the factors, and all the most validated courses of action for our case.

Two, You, because you always have the right to do more, or less, or just a bit differently, than the standard of care now says. Because sometimes it's a grey area and it's your life.

Grade 1 with infrequent mitotic activity sound really positive. It seems like your main challenge is size of the tumor.

Good luck with your appointments!

abc I'm guessing that what your MO really meant was a neoadjivant chemo and/or a targeted therapy to try and shrink the tumor, not actually "hormone therapy". It's so much information to process and remember at the Dr visits, it can help to bring a friend who writes it all down!

I had a very similar situation to you, a larger 4.5 cm tumor that took up a lot of space in my small (size A cup) breast. Because of the large size and being HER2 positive, I did a few months of neoadjuvant chemo, then surgery. My surgeon recommended a mastectomy instead of a lumpectomy, as removing a larger mass from a small breast leaves it looking pretty deformed.

I decided to stay half flat to avoid extra pain and cost and recovery of reconstruction- when you're small breasted it's easy to add a little padding into a bra and look natural under clothes, and I'm happy with my choice.

MinusTwo

I'm on a Medicare Advantage plan and I've never heard of being restricted to one doctor a day.

HeartShapedBox -- abc's cancer is Grade 1. Chemo works best on cancer cells that are rapidly dividing, e.g. Grade 3. I suspect that abc's doctors believe that her cancer is driven by hormones, so yes, they are going to put her on hormonal therapy to cut off the supply of estrogen that feeds her cancer. This is a relatively new approach for large but slow growing, hormone positive cancer.

Good luck with all your appointments, abc!

Yes, hormone therapy makes sense and since the tumor is largish, it makes sense to use it before surgery.

The Oncotype Dx test will probably guide treatment after surgery.

Good luck!