Can anyone point me to some solid information on reoccurrence. I have noticed a some post regarding Estrogen positive recurrence that have worried me and I can’t stop thinking about it.
I saw another post about going private and given a different drug for treatment. They claimed the drug had less reoccurrence.
I am still having my Radiotherapy. I have asked my BCN about recurrence and she said we don’t talk about that.
That makes me feel she would want to talk about it if positive.
I know we are all different and our cancers can be too but there must be some stats worth reading. This whole thing is scrambling my head.
That’s a very unhelpful answer and I would suggest that you may be post in the Ask the Nurses section here instead in order to answer this question . It’s easy to lose trust in your team unfortunately - I’ve had that experience . I’m not sure what drug it is that you’re on and which you have heard might be better - have you checked out Dr. Liz O’Riordan on YouTube who was a breast cancer surgeon who has had breast cancer herself ( with a recurrence I believe ) as many of us have found her videos Ticking off Breast Cancer useful . When you have finished radiotherapy you might benefit from doing the Moving Forwards course which certainly helped me sort my head out after treatment.
I would imagine that the stats are changing all the time as so many more of us are surviving both our original illness and other health conditions meaning that we are living longer so from that point of view there’s more time to develop a recurrence . As far as I understand it there’s a 70% chance of being permanently cured - I was also ER+ so that’s what I’m hoping for . Because this is a breast cancer forum we are likely to read about people who have recurrence as people who don’t will eventually stop posting leave the forum and not come back . I have heard and read that ER+ is a little more likely to return many years later than other types of breast cancer . You may find it difficult to get hard stats as every case is has many variables .
I quite often surf the net and I also work with numbers and statistics. I had to question my medical team about late recurrence as they were not very forthcoming. Only quoting the standard 5 year figures.
As Joanne mentions, stats always change and they can be presented in such ways to make one thing sound better than another. So it’s important to keep a broad mind if you go hunting. Check the dates of each study and try to extract information from more recent studies as they will be more accurate. Check that the study is most relevant to you I.e the type of cancer. Most importantly try stick to official sites, I.e. Cancer Research UK. There are a lot of website out there that have no supporting data to there claims or trying to sell false hope.
I am ER+ and believe the higher risk is later than 5 years. There’s not a definitive number, but it appears to be around the 10 year mark. But please remember it not a guarantee you will get a recurrence its another statistic - most people will be ok, but unfortunately some will not.
I will tell you I am one of the recurrence ladies. I didn’t know all these years that I was a walking time bomb. ER+ with a small 1.2cm tumor, but two lymph nodes were positive. I had a lumpectomy, chemo and rads. Thought I had it covered, but here I am 14 years out and I am back in the loop. It’s sad and frustrating, but there are many treatments now that weren’t around back in 2011 and there are also many ways to reconstruct. I look at it this way… I had 13 years of trouble free breasts, lived my life and moved on.
This time it’s a very different, but the fact that I wasn’t Stage IV (greater chance than local recurrence) was excellent. This time it’s a DMX and I will have DIEP at the same time for the best results. Just do your treatments and then try your best to get back to living. There really is no way to know. By the way, I have no family history, my genetics tests came back negative, I am a healthy weight and I don’t smoke and hardly drink. One day they will have better stats, but once I am done this time… I’ll forget and move on again.
Hi Lisyanthus! I’m not quite sure what you mean in regards to solid information on reoccurrence. Are you looking for studies or articles to read? As far as general information on recurrence, all breast cancers have the potential to come back. Hormone positive breast cancers are unique though because our five year cancer free rates are excellent but in all actuality our recurrence rate goes up after that. Because of this no one can know for sure they are cured until they die at old age of something else. Hormone positive breast cancer can reoccur for up to 30 years after diagnosis. In saying that though, the vast majority of people will be cured although it’s hard to wrap your head around the uncertainty of it at the beginning.
Thank you for your replies. I would rather not hunt the internet but I can’t seem to get any answers. I realise things are improving all the time which is what we all hope for.
I will definitely look for Dr. Liz O’Riordan and I think I would benefit from the moving forward course or maybe just talking it through with someone. I am open to learning all I can to help myself.
I am sorry to hear that rockym. What a great positive outlook you have. I need to get there. I realise I need some help to get my head around it.
Thank you for your honesty and sharing what’s happened to you.
Sending healing vibes and love to you x
Thank you for replying Kay. I guess I am looking for an answer that doesn’t exist. There is no yes or no as to reoccurrence.
I was looking for trusted information, some certainly shouldn’t be read as it made my thoughts worse.
You ladies have helped me as I realise I have to accept what’s happening for what it is. Either spend the rest of my life worrying about it or get on with it. Thank you! X
An after thought…. Have you looked at NHS Predict? You can input your particular details if you know them. When it calculates the “statistics” it gives options for 10 and 15 years. Doctors/consultants use it as a guide.
I expect the longer range would be less accurate, because there are limited studies. But it’s an option if you want.
Either way, take care and hope Christmas is kind. X
I was in exactly the same situation and had three sessions with a counsellor.
I had bilateral mastectomy in July for bilateral cancer and now on letrozole only for 10 years.
We talked about how I’m looking for an answer and reassurance that no one can ever give - ie 100% no reoccurrence. No medical team, no doctor can give me that so I need to live life and do my best with what I can control.
I have a daughter whose friend died a couple of years ago in a car crash aged 17, and another friend of mine lost her daughter ages 6. These things could not have been predicted and it hits home to me that life no matter what we hope and pray for cannot be guaranteed.
Don’t get me wrong, some days I am really panicked at the thought of reoccurrence and worry about a spot which I wouldn’t have done before, but I try hard to pull myself back to life now in the moment and what I can control.
Hope this makes sense xx
Oh gosh do I feel that. The first time you really confront that breast cancer is forever in your head is a mind bender. Everyone spins because it’s the confirmation that nothing will ever feel the same again. Anyway it does get better as you confront the fear of it, rationalize your way through the fear, and realize that it’s just a thing. Granted a scary thing but we all have those and we all have to deal with it. It’s what it means to be alive after all. Good luck with everything but the fact remains is that most of us get the cure. There is no reason to think you will be the exception to the rule.
Hi Lynn,
It makes perfect sense. My sister died age 12, burnt in the house so I can really relate to your words.
I picked up some booklets etc after my treatment today and I am definitely going to have a few counselling sessions and hopefully the moving in course.
Thank you for your wise words xx
Have you noticed the lack of stats on recurance? Predict, that so many treatment decision are based on, only gives survival related info, but not out of them, how many had recurance. Quite pathetic that this data is either not collected, or not made known. I get there would be nuances, as people dont have the same treatment. If it reoccurred for me, it could be as much about my choice not to continue with tamoxifen, as with with what type I started with, or that I wasn’t offered chemo. Its complex data, but still, youd still think that there could be devised a predict-like tool to say that out of this type of cancer, those who had this treatment had a recurrance of x, and those who didnt had y. In reality, no tool like this exists. Perhaps because, there would be different types of chemo, and out of those, some may have had to stop, or had lowe due to their bodies reaction and coping. The more you consider how diverse everyone’s experiences are, the more you see how hard it is to gather meaningful stats on it. But then, one wonders why and how, the stats are grouped for predict? Its a blunt tool as far as I can tell. Add in tamoxifen and chances of death become better by such a percent?- but out of those, up to 50% are known not to take it, I’m open about why I dont, but not everyone is with their health team. That skews figures. Also predict takes basic ‘did you have chemo or not’, nothing about type of chemo, or length. Then theres the PI where everyone scores above 12% as a basic positive. There is no place to add what type of cancer you had. As I say, a blunt tool, but it is something.
Who knows, recurance is individual, response to treatment is individual. Lymph node ir LVI seems to be a key marker, but its not inevitable for those who have it.
Thank you Kay. I think it’s the fact that I have seen grades, stages and reoccurrence discussed when I joined this forum so I expected to get those answers from my BCN. To then be told we don’t discuss it makes me feel like there is something to hide. I went with well if it was positive she would be singing so why isn’t she?
The only thing I know is it’s a 2 and not in my LN.
I had a review to see how my treatment is going and I raised some of my questions. The nurse said they were valid questions.
I have an appt on 10th Jan. The nurse has emailed the person doing that so hopefully it will get discussed then.
I love your “most of us get the cure”
My new head mantra, thank you x
I wish you well xx
You can only generalise and assume that 2 is higher grade than 1 so there may be some more risk, however its still only in the breast if no LVI or lymph node involvement, so thats a positive and it would be reasonable to assume that once removed by surgery, then there isn’t much difference between 1 and 2 going forwards, and with the same treatment, if neither have other involvement. You have reason to be optimistic, you’ll probably never nail down a number on it, try not to woabout that. You are probably reading too much into your BCN words, she was clumsy with them, probaby nothing more than that.
I don’t understand the stats to be honest. I’ve been told that with all of my treatment I have a 91% chance of still being here in 15 years (surgery, chemo, radio, hormone blockers - I had stage 2 grade 2 IDC with one positive node), but the stats also say that 1 in 3 of us will have recurrence or secondaries. That doesn’t seem to really tally up to me
She did phrase it badly and could have been a bit more helpful and given more explanation and information rather than just cutting you off - but they do have to be cautious about what they say . I’m also a Nurse but when I was a patient I was just the same as you if not worse - analysing every little thing that was said to me , body language all of that . As a Nurse I have to be careful what I say as people tend to seize onto one thing in any clinical conversation and it’s usually that they have fastened onto the worst possible outcome or like in your case become worried because something has been left unsaid .But I’ve also had people say to me either very angry very upset or both " they told me that this ( whatever it is) wouldn’t happen but it has happened " - were they really told that it wouldn’t happen or was it phrased so that a patient desperate for some hope has been able to interpret it that way. Without a recording of the original conversation it’s impossible to say . My belief from reading your posts is that the odds are very definitely on your side as they are on mine but there aren’t any guarantees and we gradually learn to live with that . I get a little anxious around the time of my annual mammogram but that is about all - just found out that it’s clear .
My oncologist told me that my overall survival rate at 10 years is 68%, so I assume that the 30% recurrence rate applies to me However, my oncologist also mentioned that this statistic doesn’t take into account the abemaciclib treatment I’m currently on, so I’m holding on to the hope that my overall survival is better than that.
I could never get a definitive number from my oncologist—whether out of reluctance or uncertainty, I’m not sure. It often feels like doctors treat us like we can’t handle the truth, as if they’re afraid to be upfront with us. But I had the courage to ask the question because I’m ready to hear the answer. These numbers should be available to us—they’re based on enough patient data to be meaningful, and we deserve to know.
My oncologist put my details into Predict (not the new version) and told me I had a 11% chance of recurrence. I’ve looked again and with my numbers I am 89% likely to still be around in 10 years so guess it was that? Would be interesting to find some actual studies and numbers.
The stats don’t say that. Now some articles do but it’s not clear where they get that number from. At any rate, even if it was true, it’s a general statistic taking all early breast cancer patients in mind and even stage 3A is considered early. Your personal statistics are what you pay attention to and you have very good personal statistics.
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However, my oncologist also mentioned that this statistic doesn’t take into account the abemaciclib treatment I’m currently on, so I’m holding on to the hope that my overall survival is better than that.