Shetland, both my twin sister and I were premenopausal at diagnosis and that is exactly what the geneticist said. Not BRCA positive but will probably find some other genetic component down the line. Our father had pancreatic cancer, as well. His brother had colon cancer. Their mother had breast cancer, so obviously there were cancer genes on my paternal side.

Genetics are a tricky thing: my Mom just turned 96, last time she was at a hospital, was when she gave birth to me which as you can guess, was a while ago :-) Same longevity on my father's side of the family, no BC in close relatives. I actually think mutations accumulated during our lifetime might be the culprit too, not just the genetic profile inherited at birth.

the test objective is to show whether or not you need to take the 10 years of AI drugs instead of 5 years, but it also predicts risk of METS. Once you reach 4 years of AI drugs you can ask Onco to do test and submit to insurance. Insurance does not like to pay for a test this early to determine if AI drugs are needed for 10 years as by the time you reach almost 5 years on AI drugs they will have something new. I wanted to post my score which is 7.8 out of 1 to 10. I am high risk, but the test also showed another 5 years of AI drugs would not benifit me.

My BCI score is 9.1%. What other scores have people received?

lala-Congrats on your lake house.

Metastatic BC--- ER/ PRs positive recurrence rates 50% 0-5 years and 50% 5-10 years. after 10 years risk is unlikely. on Her2 after 3 years they get an all clear. Triple negative no idea, they are lucky if they can find a chemo that will work on it...

While over half of ER+/PR+ recurrences happen within the first 10 years, the risk of a metastatic recurrence continues for at least 10 years beyond that:

• Beyond 5 years: enduring risk of recurrence in oestrogen receptor-positive breast cancer https://www.nature.com/articles/s41571-018-0145-5#Abs3

"Women with early-stage oestrogen receptor (ER)-positive (ER+) breast cancer who receive standard endocrine therapy for 5 years remain at risk of distant recurrence for at least 15 years after treatment discontinuation."

"Oestrogen receptor (ER)-positive (ER+) breast cancer is at least as likely to recur beyond 5 years as it is before 5 years from diagnosis."

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• 20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years https://www.nejm.org/doi/full/10.1056/NEJMoa1701830

"Breast-cancer recurrences occurred at a steady rate throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status. Among the patients with stage T1 disease, the risk of distant recurrence was 13% with no nodal involvement (T1N0), 20% with one to three nodes involved (T1N1–3), and 34% with four to nine nodes involved (T1N4–9); among those with stage T2 disease, the risks were 19% with T2N0, 26% with T2N1–3, and 41% with T2N4–9."

For triple negative, the greatest risk of recurrence is within the first 3 years, and the risk drops off very significantly after 5 years:

• Analysis of pattern, time and risk factors influencing recurrence in triple-negative breast cancer patients https://link.springer.com/article/10.1007/s12032-012-0388-4

"The highest risk of recurrence was during the first 3 years after primary treatment, and then, during the next 2 years of observation, it did not change significantly (plateau after 3 years; Figs. 1, 2). In the study population, the risk of local relapse and metastases to the brain and lungs peaked in second year and then declined significantly, whereas the risk of metastases to the liver and bones was also the highest in the first 2–3 years but then fell slightly. Furthermore, 5 years after initial diagnosis new metastases occurred only in bones. However, longer follow-up is needed to complete and verify these results."

HER2+ cancers treated with Herceptin have a low recurrence risk after 5 years:

• What Is the Risk of Recurrence in HER2-Positive Breast Cancer? https://www.cancernetwork.com/article/what-risk-recurrence-her2-positive-breast-cancer

"A combined analysis of 2 trials totaling more than 3000 patients found a generally low risk of recurrence (RoR) in years 5 to 10 after HER2-positive breast cancer diagnosis. Hormone receptor (HR)-positive disease was associated with improved recurrence-free survival (RFS)."

OVERALL:

• Factors that predict recurrence later than 5 years after initial treatment in operable breast cancer https://wjso.biomedcentral.com/articles/10.1186/s12957-016-0988-0

Da**. I recently assumed/realized that I would probably die of cancer, but I was hoping to have and raise a child before that happened. It is like a slowly falling guillotine that is coming down faster than I thought. I fought and won the grim reaper the first time, but I know he is stalking me. How did my future get cut so short. The things I wanted to do in life seem out of reach now. 

IAmAcat, my coworker Minh was young when she received a diagnosis like yours she was considered stage3C grade 3 hormone positive, I don't know what her her2 status was. Her youngest daughter was 6 months old at the time about 1995. She didn't have any children after her diagnosis like you she did chemo and radiation. She had a bmx with DIEP reconstruction later on. At the time we all thought her situation was beyond desperate but she is with us and still cancer free. She was particularly frightened because all the lymph nodes removed were full of cancer. She had 2 sets of full blown radiation treatments on the lymph nodes apparently both sides. She also was given AI drugs years later she may still be on them not sure.

She helped me come to terms with BC and gave me hope, there is no reason to believe you will not have a full cancer free life. Good luck to you.

HI everyone. Does anyone know how recurrence patterns may be effected for weaker Er cancers. I'm in the UK and have a Er score of 33 to 66 % positive an Allred score 6 and Pr + Allred 4.

I've never been told it's any different and I had all the treatment plus i take anastrozole but it's seems a weaker score to me. It was also very aggressive and didn't seem like a standard Er breast cancer. I've searched and searched and can never find much info on it. I always thought being aggressive if it was going to recur it may be earlier and I'm three years recurrence free this week .Many thanks.

Shetland. Was was reading research last week that shows you would fall into high risk category based off I have read thru this whole post and I am wondering if not getting chemo even early stage is a good thing. I opted to get Chemo and I was same as you. My decision was based off of knowing 3 ladies with METs. I just had the BCI test last month which shows I am high risk for late distant reacurance 5 to 10 years.. I have done all the treatments available so next year when I finish my AI drugs I just sit back and hope it worked. https://clincancerres.aacrjournals.org/content/19/15/4196

Herb, if your BCI test showed high risk of late recurrence for you, why would you discontinue therapy after five years? Why not stay on an aromatase inhibitor or even tamoxifen? I thought the purpose of the test was to help decide between five and ten years of hormonal therapy.

I’m not sure our diagnoses are so similar. You had grade 3 IDC and I had grade 1 ILC. Also I was premenopausal and I assume you were postmenopausal since your stats show anastrazole without Lupron.

Since I did not do the BCI test we don’t know what risk category it would have assigned to me. Now, it is the case that with the new, refined information we have about Oncotype scores, as a premenopausal woman with a score of 16, I would now fall into the category of consider chemo or at least more aggressive hormonal therapy with ovarian suppression and an aromatase inhibitor. I knew back then my being premenopausal had to be important. Furthermore, I had doubts about Oncotype’s accuracy for ILC, and about tamoxifen’s effectiveness for ILC. I wish I had followed my own intuition about that and not the cookie-cutter recommendation of all three medical oncologists I consulted.

Good luck to you, herb. Be well!

Number of years on AI is not a one-size-fits-all protocol. I read the synopsis of the studies that showed 7 years on AI is the same as 10 but those are just statistical averages. I just saw my MO two weeks ago and in my case, she recommends at least 10 years of hormonal therapy (will decide whether to switch me to tamox down the road and depending on bone density). In fact, she left the door open for more than 10 years if everything else is stable.

I have never been able to correctly interpret a graph, but in my opinion that is not the best format to reflect the risks of recurrence of bc. If the greatest risk of recurrence for ep + is during the first 5 years, the blue line should reach its maximum point at 60 months, then be flat until 120 months and begin to lower. I think that graph suggests that the risk of recurrence is increasing and reaches its peak at 20 years

since this was bumped up just after metastatic breast cancer awareness day, I will share some current research.

The first one I have is from the Netherlands. 20% of treated patients (someone above said the stats referred to untreated - this is not so!) had recurrence and of that 20%, 72% had distant metastases (as opposed to local or regional recurrence) over 10 yr follow up.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC56020...

One of the problems we have is that the USA is not counting recurrences properly (stage 4 are only the de novo and anyone who recurs technically stays at whatever they were staged when diagnosed) So we need to do retrospective studies to see how many go on to metastasize.

I am at my cancer center in between appointments atm but will try to come back with more studies/resources. Definitely the risk is not insignificant and IMO not talked about enough.

I also think many pts get confused by what their Oncotype results mean...