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

That's a tough call with an aggressive grade 3 cancer, even if it didn't escape the ducts. The main long term side effect of chemo seems to be peripheral neuropathy. No one seems to know the likely risk in individual cases. Some say around 20% of patients. In my case, it's not painful but it makes walking unpleasant. It feels like walking on wet sand. It also increases my falls risk -I'm 76. I no longer drive, though I still have a licence. Tried acupuncture for quite a while but it didn't work. Once those nerves are dead, it seems, they don't regenerate. I don't think enough research has been done on Chemotherapy Induced Peripheral Neuropathy.

Thanks Freckle1 fie the info. O will research more regarding the neuropathy. I am 60 years old.

You might ask your oncologist whether Anastrozole- estrogen blocker - could substitute for chemo. Anastrozole has a bad reputation on this forum! Not without reason. But it's hard to separate cause and effect. For example, I get mild leg pain at night. Is that due to Anastrozole or neuropathy? Or just the effects of ageing, at nearly 77? Everyone over 40 has some arthritis. And you CAN counter the effects of Anastrozole on your bones with high intensity supervised weight lifting etc. As I have done after only six months.
See the discussion of the Onero program - developed here in Brisbane - on the Osteoporosis forum. Not much awareness yet in the US and Canada, apparently.

Thanks will do.

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?

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!

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

Very similar to me and yes pathology changed after surgery. I did do the 3 months of chemo which I started to see some pain on my 11 th week and skipped last one due to pain that roamed on and off .
I did do herceptin for 1 year no problems …being estrogen positive I did try all 4 pills after radiation but the side were too much for me . Radiation was no problem .
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.