Diagnosed with invasive ductal Carcinoma 2.2mm. Er/HER2 +3 positive

Something I learned after reading lots of research on breast cancer, pay attention to what the discussion is about. When we talk percentages and endpoints, what criteria is this based on?

When you’re told life expectancy is 80% after 15 years they probably mean OS, overall survival. So, say, 80% doesn’t sound reallly bad, but what is my RFS, recurrence free survival, or DFI, disease free interval? See acronyms below, with link.

I’ve become more concerned with recurrence and the expected time lapse (interval) before the next recurrence. My decision is based on my DCIS which was fully removed but has a high recurrence rate, and a 50% chance of being invasive at recurrence. So my current OS is a good number, but between now and later I have a high likelihood of getting another cancerous lesion (great, just keep cutting these things out!) but it could be invasive, which then lowers my OS. And next step, being in a metastatic state is definitely a different beast.

Also be aware of how “risk” is discussed. Most often we are told the relative risk, not absolute risk.
For instance, if you’re told that a treatment can cut your risk in half for getting an invasive cancer recurrence:
And it is known, in this example, that for every 100 women, 30 (30%) will have a recurrence.
RR Relative risk: They are looking at 50% of the 30 that had a recurrence. 15 could potentially have an invasive cancer recurrence.
AR Absolute risk, though, is 15%. For the same group of women, for the same treatment. That is because absolute risk is looking at how many (15) of the entire group (100) actually had an invasive cancer recurrence.
50% does look better than 15%. But be clear about the percentages. When it is said that there is 50% risk, they may not mean 50 out of 100 won’t have a recurrence, it may mean 15 out of a 100.
To be fair, doctors are giving us numbers that come directly from research. Their medical license states that they must use accurate data in their treatments and recommendations. If the research outcomes used RR and OS then those are the numbers usually shared.
See a good explanation on RR below, and link.

Acronyms used:
DDFS, distant disease-free survival; DFS-disease-free survival; DRFS, distant relapse free survival; IBCFS, invasive breast cancer-free survival; IBR, ipsilateral breast recurrence; IBTR, ipsilateral breast tumor recurrence; IDFS, invasive disease free survival; LRR, locoregional recurrence; OS, overall survival; RFI, recurrence-free interval; RFS, recurrence-free survival
From the Standardized Definitions for Efficacy End Points (STEEP)
https://ascopubs.org/doi/10.1200/JCO.20.03613

Risk:
“Absolute risk refers to the actual probability of an outcome occurring in a specific group regardless of any other factors. In this case, it would be the chance of being struck by lightning. Relative risk on the other hand, compares the risk of an outcome between exposed and unexposed groups.”
https://www.osmosis.org/learn/Relative_and_absolute_risk

I’m triple positive too. I had mastectomy because my tumor size was very large that lumpectomy impossible. I also had the exact treatment as your Oncologist told you. The type of chemo I received (I believe you will get the same from your description) was very mild. I returned to work the day after my chemo and never experienced chemo brain. Fatigue did not start until the last month of chemo. I walked a lot, even on the day of chemo, it might helped. The only thing bothered me a lot was rashes on hands. I had to cook for myself so with both hands full of rashes, it was very uncomfortable. I wish you best of luck and God bless you!

debby100. God bless you too. Thank you so much for your response. So do you feel thar all you went through with the chemo was worth going through?

I know I am being vain, but I have had a head full of hair my whole life and it scares me to see myself bald. Plus, being deadly sick through it all. I have friends who went through it and they said how terrible it was for them, but they had larger tumors or far advanced stages than me and didn't have an option. I know I am going to do whatever gives me the best outcome ad I have seen best friend suffer and die from breast cancer. I just want to get some perspective from others who have gone through it. Thanks so much for your response.

I also am triple positive, with a smaller IDC tumor. I’m doing the exact regime recommended to you. To prevent peripheral neuropathy, my onc team recommended taking l-glutamine the day before, day of, and day after chemo. I also ordered the cold gloves and slippers, although I haven’t used them yet. I’ve had two Taxol/Herceptin treatments with just a little fatigue as side effect. I’m 81, but otherwise healthy. Not looking forward to hair loss, but have a couple wigs. Good luck to you!

lnw @lnw

It is such an individual choice because everyone's reaction to chemo and estrogen blocker are different.

Chemo, though not pleasant was not a terrible experience for me. I did loss my hair, but it came back. I was fatigue, but done of the other side effects some people experience and no long term side effects. I actually never considered not doing chemo.

On the other hand, I had problems with estrogen blocker I took after chemo and radiation and only stayed on them a year.

I am 5 years out from stage 2 breast cancer (2 lymph nodes positive), 68 years old.

Everyone needs to weigh the risk vs side effects in their situation.

What is your biggest fear about chemo?

Thanks Rubyslippers for the research & knowledge. This is all new to me as I was just diagnosed on Nov 2023 and was informed that I had DCIS stage O and would need a lumpectomy and then 3 weeks of radiation because they caught it so early. No one wants to hear they have cancer, but they said for me thus was tge best situation I could ask for, so I wrapped my head around surgery & sone radiation. No big deal! Then after surgery on March 25th, my pathology report showed thzt one small 2.2mm tumor that was not picked up by the needle biopsy and it was invasive. Changed things for me, now because of that tiny tumor that was removed. I am looking at chemo. I just need all the info and knowledge that I can get, to wrap my head around if going through the side effects of chemo is worth it for such a small tumor. So, thank you again for thr info thzt I can ask my doctor.

I now wish I had opted for a preventative mastectomy after my first brush with breast cancer. Then I wouldn't be having to cope with peripheral neuropathy and the effects of anastrozole. Plus the impact on my family.
When I was 60 I had DCIS on one side. Mastectomy but no other treatment necessary.
Annual mammograms and ultrasound on the other side. Technicans used to say I had a "dense" breast - wish I had taken more notice!

I found a female surgeon willing to rid me of the remaining breast but I didn't go through with it. Seriously bad move.

It came back with a vengeance when I was 74. Out of the ducts this time. Hiding behind the nipple so I couldn't feel it. Only a small tumour but diagnosed as aggressive grade 3 estrogen -fed - although PET scan showed it hadn't spread.

So chemo, radio, now anastrozole for another 3 years.