“5 year survival” starts at diagnosis or when therapy ends?

@mossa what a good question! I always assumed from the time of diagnosis.

Do you have other sources of info about your 5 or 10 year risk? Was your cancer triple negative? Stage 4? If ER+ and HER2- did you have an Oncotype?

I wonder where your surgeon got that figure.

Good luck with your treatment and recovery!

I was stage 3 , 7 positive lymph nodes-1 node with extension, HR positive Her2 neg.

HA! I was just coming on here to provide some measurement of encouragement to those on the journey, and I found mossa's post. It is 5 years ago today I got "that call" I was in a church meeting for my work, took the call and literally got sick. My diagnostics were complicated: every time I went for more imaging they found more things. I had a great group of nurses at the time, and they indulged my sense of humor over everything. It was the only way I could cope. That, and the watchcare of my daughter who, by chance, had moved home shortly before. Immediately she put me on an all organic, plant based diet, so we felt like we were attacking the beast from the get go, even before any medical treatment began. I ended up with Stage IIIC (5 tumors, 10/16 nodes diseased) necessitating a mastectomy and of course multiple node removal. I recently read that when statisticians came up with that 5 year mark, they were considering how many people were still alive 5 years after their date of diagnosis. Clinicians, however, look at it differently. My radiation oncologist (which was my last leg of treatment) starts counting from the last day of treatment, which for me was not Feb. 13, but Oct. 17 (2019).
I had ILC HR pos/Her2 neg. On Tamoxifen 2 years, and now AI (will be for at least 8 years). Still working the same two jobs I did throughout diagnosis and treatment. Very fortunate. My best to anyone on this journey.

@mdr3 I love your positivity! My oncologist said I will be on AI for 10 years (8 1/2 to go!) so instead of dreading taking it for that long I will look forward to every pill!

I was going to try to do 10 years of letrozole but the Breast Cancer Index testing showed high risk but no benefit from extended therapy. This spared me further meds but I was disappointed that more letrozole would not be helpful. I had figured even 7 years would be good, since I read that was equal to 10 in effect.

I miss my letrozole security blanket! But bones were another reason to stop, for me.

If any of you are planning on 10 years but would rather get off, the Breast Cancer Index is now in the NCCN guidelines but a few years ago my docs didn't even know about it. I read about it on breastcancer.org. Now it is mainstream.

@windyshores thank you! I see oncologist Friday. She is very willing to share information about my treatment plan and I will ask about NCCN AI guidelines.

Keep going another 50 years
Keep praying and giving thanks
To a great and mighty God!
You a great!
M

My understanding is that is from diagnosis, but even with the numbers there is still leeway, and attitude and other things definitely help!

For me, after chemo and surgery, since the TNBC was still present in my chest wall (we hadn't started radiation to take care of that yet), and the tumor, and a *sliver* in a lymph node my percentage was 65%.

But within that 65%, my oncologist at UCLA explained that the highest reoccurrences would be in the first 2-3 years after diagnosis and then there is a drop off. So far I am clear at 3 1/2 years.

My current oncologist is more conservative and will keep looking vigilantly through year 6, but even she is letting up a bit, and my last bloodwork looked so good we can go to doing it 3xs a year instead of 4xs, and we're now able to do yearly CT Scans instead of Pet/CT. (I also do a mammo a year and an MRI a year...)

I also work on eating healthy, walking 5+ hours a week, and doing a nightly fast of 13 hours from dinner to breakfast.

I am 42 with an almost 4 year old who was born as I was discovering the tumor. It's scary and infuriating, and often hard. My husband and I both did therapy and a lovely couples therapy through City of Hope as we did active treatment.

Now that I am done with active treatment most people assume that I am fine and that the cancer was just a difficult part of my journey. That's why I am happy to stay on the boards here at Mayo and be connected to other folks who can understand better what we are all dealing with.

Hugs!

I just saw my Oncology N.P. I asked her that very question. She said it was from the day I had my mastectomy. Ofcourse, I did not have to have radiation or chemo after the surgery, because I was stage 1. I believe the count would start after treatment was finished for those women from what my N.P. said.

Yes, that's because clinicians go from what they feel are the "cancer free" mark. For surgery, when they do the surgery, and for those with treatment (chemo or rad., or both) from the day they finish that treatment. Statisticians (the ones who came up with this 5 year/percentage thing in the first place) go from the day of diagnosis. I was told the same thing about the first 2-3 year higher risk period as well, but way into my surveillance time.