Hi, could the ladies that have ER+, PR+, HER2+ IDC, Stage 1 please respond to this post as I really would like to learn from your experience. If you are ok with it, please share 1) what treatment you have been on, side effects, if you were able to work and 2) how long it's been and if you've had recurrence?
@JoT A 2.5 cm tumor was found in my left breast using a MRI and I was told (because of the size) that I needed a mastectomy and I chose reconstruction. I was referred to a Plastic Surgeon who with the help of another Doctor/Surgeon performed the mastectomy and an expander was placed during the same surgery (March 12, 2019). I was diagnosed with triple positive IDC and my lymph nodes were clear. I then went for chemo which included Herceptin. I had 6 cycles of chemo (every 3 weeks) and then I had Herceptin alone for 11 cycles (every 3 weeks). My iv chemo was docetaxel and carboplatin and I took ondansetron and dexamethasone orally to help with side effects. I did not need radiation.
Chemo affects everyone differently but I was very fortunate and had minimal side effects. I did work for most of my chemo (grocery store/produce) treatment but didn't work full time. I found that towards the end of my chemo was the most difficult. I lost the bulk of my hair in about 2 weeks from beginning of chemo.
As for my surgeries, the only thing that I would consider an issue was that my surgical drain didn't work during the March 2019 surgery. On July 2, 2020 I had my expander removed and replaced with an implant on the left side. My right side was then reduced/lifted.
I am all done my surgeries and treatment and am only on a hormone blocker Letrozole (began Dec 5,2019). I am to take Letrozole for 5 years. From what I remember my Oncologist telling me, I am stage 2.
Any more questions/information needed, just ask.
In 2017, I was diagnosed with a 2.5 cm tumour on my left breast. Initially they told me all I needed was surgery - but alas, that was not the case. I elected for bilateral mastectomy with no reconstruction. As they couldn’t get clear margins, I got the triple threat - surgery, chemo and radiation. I am also ER+, HER2+ IDC., stage 2 . I also did a year of Herceptin. I was started on Letrozole but had difficult side effects - dizziness, overall feeling unwell, headaches - so i was switched to Tamoxifen, which i will be on for 10 year.
I didn’t work as my cancer centre was over 2.5 hrs away. I had chemo every 3 wks for 6 rounds. The first week after chemo, I was nauseous and fatigued. The fatigue was a complete all body exhaustion . Radiation was everyday ( Monday - Friday ) for 25 sessions and it was even further away - 3.5 hours. For me, I definitely could not work due to the nature of my work ( mental health counsellor) , distance and side effects. Yet, everyone is so different. I know some people have been able to work successfully with sympathetic employers, who allow them time off as they need it.
Stage 1 - is great news - it means they have caught it early. Your treatment may be different than mine .
Now 4 years later, still no sign of recurrence, except for a spot that we are “watching” - it was there when i was first diagnosed but maybe an old injury? I would be lying if i said i don’t worry about recurrence. What I can say though, the early days of “not knowing” the treatment plan, understanding my diagnosis - was definitely tough. It really affected my mental health. I had to remember that our mental health is important too. It’s ok to not be ok. It’s ok to go to the “dark side” of cancer - just don’t stay there. As you get more info, you will start to feel empowered again. Reaching out here is a great way to start!
So glad you posted - great questions. Feel free to reach out anytime. Kim
Hi @JoT thanks for reaching out. I have HER2 metastatic breast cancer. So far I’ve done Ribociclib. That’s an oral chemo. Life felt totally normal on that one and didn’t loose my hair. Didn’t work for my metastases so was switched to Docetaxel. Worked excellent at shrinking cancer. Was harsher couldn’t have worked on that one. Too many days in bed and side effects to actually have a job. Unless your work is understanding. Ultimately came off because of infection and did another oral - Capecitabine. Was totally normal minus sore feet after 6 months or so on it. Could have worked on that. That chemo stopped working after a year and now currently on Doxorubicin. Outside of the week in bed the other two weeks are great. Hope this is of help to you.
I am 60 yrs old, OR nurse for 38 years. Right kidney cancer (RCC, clear cell) Kidney removed May 2020. Bilateral breast cancer: DCIS right breast, IDC left breast, metastatic to lymph nodes x 6. All tumours less than 1 cm. Stage 1, slow growing, but already spread.
Bilateral mastectomy, bilateral sentinel lymph node biopsies, axillary node dissection left, insertion tissue expanders, April 2021. AC-T chemo x 5 months, June-October, Completion axillary node dissection, lymphovenous bypass grafts x 2, (to prevent lymphedema and it works!!!). November 2021, radiation x 15 treatments January 2022
Happy to answer any questions! Oh! ER, PR+, HER2-
You are going to be ok, and you are not alone❤️.