So true. We can't run from genetics.
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.
muska- you are correct. We cannot just rely on genetics. My mother's side of the family live into their late 90s and early one hundreds with relatively good health. The females on my father's side also lived until their mid 90s. The men not so lucky. Most of the men were heavy smokers and heavy drinkers and they died before age 65. The man either died from lung cancer or liver disease. We are going back quite a few years before there was adequate research regarding heavy smoking and drinking.
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.
I am with you Lala High risk and no benefit from AI drug past 5 years. We are in a small group.. Most like 83% get a good score ... So I read the trials. they compared tumor cells in node negative patients. the study started to collect tumor samples in 2006 til 2009.. so they have the 10 year data on which patient ended up with METS, stage 4... distant reacurance.. They know the genetic make up of those tumors and compared our tumors to those who ended up with Mets to determine our score.. The trial did not get personal information on the patients so they do not know if they had Chemo or not. My only saving grace is I threw the book at this, I took chemo, radiation and I did all the AI drug no matter how awful I felt from them. I can only hope that I killed off any cells that may have spread to another area thru the blood, since I was node negative. I do feel like I have the grim reaper following me, but I keep fighting the thoughts in my head. I decided it will not put me down and I will not curl up in a ball and stop functioning. One thing I am doing is not concentrating on save big for retirement and started making more memories. taking trips more often.. I would hate to have this come up on me and here I sit.. all set for my retirement that I will never enjoy. So Live Large...
herb-- I hear ya! I've decided to live my life while I can....just in case. Hence the new little lake cabin I bought myself.
lala-Congrats on your lake house.
Why Do Some Cancers Come Back?
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...
Below are the rates for HER2+ cancer up to 2015. I think they have improved since then. But I certainly did NOT get an "all clear" after 3 years, even if I am NED. I had no mets and I am still on 6 month recalls with cancer antigen testing every 6 months also to watch the curve. I had imaging again this year 5 years after final chemo.
5-year relative survival rates for women diagnosed between 2009 and 2015:
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:
"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."
"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:
"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:
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.
Im confused on what you are saying . Are you saying 50%of ER/ PRs positive will have a recurrences in 5 years or 50% of those that do have a recurrence happen in first 5 years . Please explain
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.
Honey - the charts & data from Beesie are more accurate. See if those make sense.
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.
HoneyBeaw, the idea is that of the ER+ people who do have a recurrence, for half of them it happens beyond five years from first diagnosis. NOT that half of them will recur. That’s too high a number.
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, have you discussed that with your MO? You could continue AI beyond five years, I guess it all depends on risk assessment. Current guidelines probably say five years on AI for someone who was stage I and node negative, but as additional data become available I don't see why you couldn't continue AI if that were recommended due to a high risk. Like anything else, that would be a trade-off between potential risk reduction and severity of side effects if you are experiencing any.
I am spared this decision because I had many positive nodes, so ten years of hormonal therapy are a given (assuming no relapse in the meantime.)
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!
I agree, I would ask your MO. The link is from 2013, something may have changed since then. The 10 yrs has also changed. In 2017 it was recently thought that 7 yrs. hormone therapy is just as good as 10. I don't know where that stands now.
Beesie, you are a godsend to this site! I read on one of my test results that my lifetime risk was greater than 25%. I thought, where did that come from? You just explained it above. Thanks again for your wealth of information.
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.
Beesie, I'm not gifted to calculate my risk of distance mets. Can you help? Tia!
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
The reason BCI test shows to stop after 5 years is based off the DNA of the tumor and how well it response to hormone therapy and they combine that with the risk of Osteoporosis, which is the highest risk factor side effect for taking AI drugs. So now that I have looked over my report, even though I have a higher score 7.8 on BCI. on my dexa scan I lost 8%bone loss after Chemo and next 2 years I lost another 6% and was put on Prolia so my risk factor for osteo (which also kills) is higher than my risk factor for a recurrence from BC cancer.
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.
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...
Thanks, moth. You are a font of important information.