2017 BC Diagnosis…how are you doing?

Hi jons_girl. I was first dx in 2008. Then 1 met to bone in 2017.

I was fine till a few weeks ago when a new primary was found in same brest.

But life is good. Grateful for the new treatments for TNBC. I hope others post.

IDC Stage 1b, grade 3, node-negative. Lumpectomy in Dec 2017, then chemo and radiation in the first half of 2018.

I started tamoxifen, but had to pause in Dec 2019 for uterine bleeding and severe joint pain. Biopsy was negative, but I decided to cut my losses and have a complete hysterectomy in Feb 2020. (Note the timing there, because Covid closed everything down the following week.) My pathology report showed uterine wall thickening, fibroids, and ovarian cysts, which explained a lot. I was 60 yrs old at that point, so the hysterectomy was an easy decision for me, but I was shocked at the pushback I received from a few doctors. It turns out to have been the best decision I've ever made.

I resumed AIs, but continued to have joint problems and fatigue to the point of not being able to climb the stairs or go to work. Two oncologists later, I was reassured that 4.5 years of hormone therapy, chemo, rads, and the complete hysterectomy was probably enough for my situation. I'm finally able to exercise again, and I feel better than I have since before my cancer dx. I might look back and regret this decision to stop AIs early, but getting rid of the estrogen source and being able to exercise again seemed like the best option.

Good to see everyone.

Morning. Nice to see everyone doing well. I am as well as I can be despite just recently losing my sister to this disease. She was diagnosed a couple of years before me. She likely saved my life. I didn't even have a primary doc back then. At her urging I signed on with one and was glad I did because by the time I got to that appointment and received a bunch of test orders to be done is when I found the lump.

Bad news.

In 2017, I had three lumpectomies before getting a clean margins, but I ended up having a double mastectomy a year later when starting reconstruction. After three lumpectomies, I didn't have much breast left, and I felt like it was proactive. Did not need chemo or radiation, lymph nodes were clean. Low oncotype score.

Unfortunately, this July 2025, a small lump (1-2 cm) was found in my breast skin, removed, and came back positive. So far two surgeries to get a clean margin, three sentinel lymph nodes removed, all positive for same breast cancer (ER+, PR+, HER2-). Next is more surgery to remove level 1 & 2 axillary nodes along with axillary lymphovenous bypass. 20 weeks of chemo, 12 weeks of radiation. Oncologist says it's curable. Not looking forward to the cure, though.

MI was also stage 1. My Penn Medicine (supposedly the best) oncologist never once ordered anything but bloodwork. She even told me after five years to only come in once a year. IMO she was negligent and should’ve ordered the PET FES scan at least once every few years. If she had done that, I most likely would not have cancer in all my axillary lymph nodes levels. I never even heard of this test until my recent second opinion at Fox Chase. Also, the regular PET scan a month earlier showed nothing in my armpit.

Definition:FES PET (Fluorodeoxyglucose-Estradiol Positron Emission Tomography) scan is a nuclear medicine imaging technique that uses a radioactive tracer to detect estrogen receptor (ER)-positive breast cancer. The radiologist tech says it's the only female specific PET scan. Apparently, there are many more PET tests specific to men's cancers. Yes, I switched from Penn Medicine to Temple Health Fox Chase. I'm in the Philadelphia PA area. Fox Chase is the one who told me about and ordered the test. I blame my Penn oncologist for letting this cancer spread into my nodes. No scans ordered at all in 8 years.

One thing I just found out about the FES test, it will not work for detecting breast cancer spread to the liver, apparently the liver absorbs the medication quickly, as well. So an additional scan could be necessary just to check the liver.

The FES PET was approved in 2021 and can be useful for detecting ER+ cancer, especially lobular which has weak FDG signals. It is three times the cost of a FDG PET ($24,000 vs $8,000) so will only be covered by insurance if the doctor can make a compelling case for it. There are currently only 43 hospitals which do them. If you are taking tamoxifen or fulvestrant you need to go through a 6 month washout first. AIs don't interfere. As crossh said the FES doesn't show mets in the liver, intestines or deep in large bones.

It took 9 months from my MO's referral to ortho for hip pain to getting a FES PET for a tumor in my acetabulum which looks like a met on MRI but can't be biopsied without irreparably breaking my hip. They were looking for something else ER+ to biopsy but only my right lung lit up; that was my radiation induced pulmonary fibrosis which I learned has estrogen receptors. I'm choosing the ability to walk, hoping the bone doesn't crack and being optimistic that this tumor happens to be one of the 5% in this location that are benign. I've had so many rare SEs from radiation scatter that I have quit worrying and just deal with whatever weird health problems show up.

Crossh, I hope your surgery, chemo and radiation go well. It's nothing anyone would choose to do but we don't have much input into what goes wrong healthwise. As Sandy said cascading side effects lead to more medical problems to deal with.

Insurance coverage is so variable. The insurance I had before I retired (my medigap is through them) still classifies FES as experimental. Medicare couldn’t tell me whether they would pay but they did. I was a bit concerned but my MO told me she had a solid case if it was denied. Was your cancer ILC? FDG seems to be unreliable picking that up. I’m glad you got the FES before the cancer left your lymph nodes. You’re in for some serious treatment but your MO sounds positive about the outcome. We’ll all be pulling for you.

MO = My Oncologist

I was also diagnosed with BC in 2017. No recurrence, but since 2023 I've been being treated for colon cancer. Bad genes, I guess.