1. < Breast Cancer

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

Posted by mossa @mossa, Feb 12 7:56am

My surgeon said I had an “82%” chance of surviving 5 years. I was so blown away I didn’t ask when does that 5 years start? At diagnosis? Surgery?after radiation and chemo? I plan on many more than five 😉

Interested in more discussions like this? Go to the Breast Cancer Support Group.

windyshores | @windyshores | Feb 14 7:54am
In reply to @mdr3 "Yes, that's because clinicians go from what they feel are the "cancer free" mark. For surgery,..." + (show)
@mdr3

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.

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For hormonal cancers, risk continues to go up, past 5 years, unfortunately.

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1 reply
mdr3 | @mdr3 | Feb 14 8:33am
In reply to @windyshores "For hormonal cancers, risk continues to go up, past 5 years, unfortunately." + (show)
@windyshores

For hormonal cancers, risk continues to go up, past 5 years, unfortunately.

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Aw....you "know me" well enough to know I try not to think about that kind of stuff!! LOL Hope you are doing well...

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kathyomaha55 | @kathyomaha55 | Feb 14 1:37pm
In reply to @windyshores "I was going to try to do 10 years of letrozole but the Breast Cancer Index..." + (show)
@windyshores

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.

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How interesting. My oncologist refused to do the BCI test - unless I promised to do another 5 years of Exemestane, which I refused, I hit my 5 year mark of the Drug on 11/1/2023 - and said I was done. I wanted the BCI test - but they said no. Then said another 5 years of AI would probably decrease my reoccurrence rate by < 3%. I just could not do another 5 years! But why refuse me the test? Very frustrating. I was stage 1 grade 3B, no lymph nodes involved, Onco was 22, No chemo, lumpectomy with 21 radiation treatments, 5 years of AI.

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3 replies
windyshores | @windyshores | Feb 14 6:50pm
In reply to @kathyomaha55 "How interesting. My oncologist refused to do the BCI test - unless I promised to do..." + (show)
@kathyomaha55

How interesting. My oncologist refused to do the BCI test - unless I promised to do another 5 years of Exemestane, which I refused, I hit my 5 year mark of the Drug on 11/1/2023 - and said I was done. I wanted the BCI test - but they said no. Then said another 5 years of AI would probably decrease my reoccurrence rate by < 3%. I just could not do another 5 years! But why refuse me the test? Very frustrating. I was stage 1 grade 3B, no lymph nodes involved, Onco was 22, No chemo, lumpectomy with 21 radiation treatments, 5 years of AI.

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It's in the NCCN guidelines. Maybe if you do the legwork, print out the paperwork, contact the lab that stored your specimens and then present the last page for MD to sign!

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bessie4fr | @bessie4fr | Feb 15 9:10am
In reply to @kathyomaha55 "How interesting. My oncologist refused to do the BCI test - unless I promised to do..." + (show)
@kathyomaha55

How interesting. My oncologist refused to do the BCI test - unless I promised to do another 5 years of Exemestane, which I refused, I hit my 5 year mark of the Drug on 11/1/2023 - and said I was done. I wanted the BCI test - but they said no. Then said another 5 years of AI would probably decrease my reoccurrence rate by < 3%. I just could not do another 5 years! But why refuse me the test? Very frustrating. I was stage 1 grade 3B, no lymph nodes involved, Onco was 22, No chemo, lumpectomy with 21 radiation treatments, 5 years of AI.

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Find another doctor, get a second opinion. Good doctors won't mind. Stick to your guns if you feel a medication isn't for you. It sounds crazy for less than 3% chance.

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dmcdonald44 | @dmcdonald44 | Feb 16 4:33am
In reply to @windyshores "@mossa what a good question! I always assumed from the time of diagnosis. Do you have..." + (show)
@windyshores

@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!

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https://breast.predict.nhs.uk/tool

This is a tool doctors use to get your survival rate

You can put in different answers to see what addition benefit you might have to doing various treatments.

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windyshores | @windyshores | Feb 16 6:11am
In reply to @dmcdonald44 "https://breast.predict.nhs.uk/tool This is a tool doctors use to get your survival rate You can put in..." + (show)
@dmcdonald44
https://breast.predict.nhs.uk/tool

This is a tool doctors use to get your survival rate

You can put in different answers to see what addition benefit you might have to doing various treatments.

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I would be careful about conclusions on survival rate using online predictors that don't include ER, PR. HER2 and genomic test results (Oncotype, Mammaprint, Breast Cancer Index, Prosigna). My "predict" survival rate is lower than that given to me by those various tests based on my actual tumor pathology specimens. Still online programs like this can give a ballpark. Just don't go by them.

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1 reply
dmcdonald44 | @dmcdonald44 | Feb 16 6:40am
In reply to @windyshores "I would be careful about conclusions on survival rate using online predictors that don't include ER,..." + (show)
@windyshores

I would be careful about conclusions on survival rate using online predictors that don't include ER, PR. HER2 and genomic test results (Oncotype, Mammaprint, Breast Cancer Index, Prosigna). My "predict" survival rate is lower than that given to me by those various tests based on my actual tumor pathology specimens. Still online programs like this can give a ballpark. Just don't go by them.

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I’ll go by however many days my good Lord gives me. It’s a tool, one of several that can be used for guidance. I personally use prayer more for guidance.

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1 reply
windyshores | @windyshores | Feb 16 7:31am
In reply to @dmcdonald44 "I’ll go by however many days my good Lord gives me. It’s a tool, one of..." + (show)
@dmcdonald44

I’ll go by however many days my good Lord gives me. It’s a tool, one of several that can be used for guidance. I personally use prayer more for guidance.

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We have better tests then ever, like the genomic Oncotype, that enable some of us who would have had chemo, to avoid it. And the Breast Cancer Index allowed me to avoid further aromatase inhibitor treatment after 5 years. It is important to know what affects risk and what doesn't.

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sharon35981 | @sharon35981 | Feb 16 8:08am
In reply to @windyshores "I was going to try to do 10 years of letrozole but the Breast Cancer Index..." + (show)
@windyshores

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.

Jump to this post

Every three months I have a Signatera blood test to see if I have any cancer cells in my blood. I find this very helpful. I am 2 1/2 years in with anastrozole. 2 1/2 more to go and I’ll take the index test.

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