Happy Easter. Just wanted to get some peoples opinion. My sister had been telling everyone that I have the all clear from BC but none of my medical team etc have told me this (then again no one ever told me i actually had BC either). I had a mastectomy, chemo and rads and finished treatment just before xmas. I am now on tamoxifen and zoladex. My scans post chemo showed no signs of a possible liver secondary lesion that they had found before treatment started. Yay! So my question is, am I in the all clear? See, I myself would be very cautious to start saying things like that as I don’t want to jinx things. What do you think?
Hi Teacup and Happy Easter to you as well. The most common expression that seems to be used after treatment is “no evidence of disease” (NED). Some people might, I suppose, want to say “all clear”, or “cured”, but the problem is that some people do get recurrences of course, and it just is not possible to know who that will be. This leaves some uncertainty over everyone who has had breast cancer, as everyone knows too well when they go anxiously for their annual check ups. Having said that everyone deals with this is their own way, and finds the words that are best for them. Lots do say “I have had breast cancer, it’s been treated, it’s gone”. Personally I don’t think there are any rights or wrongs in this, it makes no difference to the outcome (ie I don’t believe you can jinx things), so we just all need to find our own way through the post treatment months and years. You’ll get lots of other answers as well - always an interesting topic! Personally, when I get through treatment, I think I’ll be saying I had breast cancer and it’s gone, as far as I know. If I have to deal with anything beyond that in the future, then I will. But not planning to dwell on “what ifs” - life is too precious for that!
Thanks Seabird. Well, first off you’re right about the jinxing thing! I did say to her that I thought it was more appropriate to say that I am NED. When people ask me, I usually say that I am finished major treatment and there is no evidence of disease. Thanks for reply. have a lovely day.
Happy Easter! I’m all full of chocolate and looking forward to the last episode of Larkrise to Candleford shortly.
I agree with Seabird- we can never be certain we are all clear, although many of us will be. I am now finding it difficult to know what to say - I tend to say I was treated for breast cancer last year, if someone doesn’t know my history - that way I’m not saying I’ve still got it, but neither am I saying that I am free of it. If someone who knows my history asks after my health, I just say I’m very well at the moment.
It’s a bit of a conundrum, isn’t it? Whilst I prefer to think that I am cured and will die in my sleep of old age, I get annoyed if other people behave as if everything is alright now. I think I’m trying to have it both ways!
When I had my 5 yrly review with my bc surgeon in January, he smiled and said
“It’s good to see that you are 5 yrs from dx with no recurrence.” No patronising words like “you are cured” - if I was, why am I still on Arimidex? Just grateful to be NED, another expression he doesn’t use. I consider my bc to be a chronic condition, just like my Crohn’s. Either disease could flare at any time, but I can’t live my life worrying or waiting for it to happen. Like seabird,if it does, I will deal with it the same way as I did the original dx and treatment - take whatever advice my doctors give me and grit my teeth.
As for relatives/friends’ questions - mine don’t ask, perhaps because they lost friends to metastatic bc within 5 yrs of dx, and don’t want to upset me.
After I was diagnosed in 2006, before I was passed on to the oncologists, my surgeon told me he would only ever be able to say I was disease free if all my tests were clear.
Got an open mind on this one…aptly if you are E+ and on tamoxifen when you stop taking it after 5 yrs you are quite high risk of recurrence…so does that mean triple negative paitents are at higher risk than positive ones???
my aunt was dx with secs., 15yrs after original dx…which aptly is quite rare.
I personally don’t believe in the ’ all clear ‘’ and prefer ''NED ‘’
perhaps Jane could answer the post tamoxifen question…the reason i mentioned it was at my check up earlier this month the way the nurse spoke gave me the impression that when i stop tamoxifen i was at higher risk of recurrence than when i was taking it.
I hope no triple negative people find offence at me asking this question as i appreciate that they have not been able to have tamoxifen, herceptin etc.,
Hi Karen - Just to join in here, my understanding is that research has shown that after five years there is no additional benefit to taking Tamoxifen any longer. I certainly don’t think there is a higher risk than when you are taking it, otherwise it would be continued for longer. The “survival graphs” definitely show that if you have made it to five years NED, you have a higher chance of making it to ten and so on. I would take the fact that you are free from cancer at 5 years and have completed all your treatments as a good sign. You are now free of treatment - go out, make the most of it and have fun! You have reached another milestone, and that’s great news. Enjoy! Sarah xx
hi seabird,
Thanks for your reply…unfortunately not made it to five yrs NED yet was dx jan.04…BCN was explaining whatt would happen if i’m fortunate enough to get to 5 yrs NED… my tumour was grade 3 so aggressive, no nodes involved, but thank you for your good wishes and information.
Hi all
i was dx in 1999 age 28 triple neg, stage 3, grade 3, lumpectomy, nodes, chemo, rads. 8 years later dx again, mirror image of my first dx in opposite breast, this was not a recurrence but a new primary & i truly believe that i did not have bc for the 8 years in-between. The one thing i do believe is i have been living with breast cancer since i was 28, my personality changed, i would not say it ruled my life but it was never far away. I had had a bi-lateral back in march '07(after 3 other ops to get clear margins, another story) & i am undergoing reconstruction at the moment, as well as going for genetic testing & ovarian screening with a view to having these removed a.s.a.p. (started menopause at 32 due to chemo). What i am trying to say i am not the person i was, no breasts, put on weight, curly hair etc. etc.I am & believe i alawys will be living with the effects of my bc dx & treatments/surgery. I know that i have now had bc twice & i intend to do everything in my power to reduce the chances of it coming back again, but i am under no illusion, i could get a recurrence some time in the future or i could develop a new primary. For me i would say there is no magic 5 or 10 year rule, but i will also not let it rule my life, all i can say is our dx’s are as individual as we are.
Thank you for that Marylou…i completely agree there is no magic 5 or 10 year rule…my aunt is proof of that too.
I hope your current surgery goes well along with your genetic tesing and ovarian screening…you certainly have been through alot from such a young age.
Hi Karen - Sorry, I had misread your posting about what stage of treatment you were at. That’s what comes of staggering out of the bedroom after the blessed hot and cold sweats and turning on the computer at 3.00 am! Like you my tumour (only it was three in my case) was Grade 3, clear nodes. Going through chemo now RADs to come and then 5 years of hormones. We just have to remember that the likeliest outcome, by far, is that not only will we make it to five years, but way beyond that as well.
Louise, what a lot you have been through, and good luck for the surgery and investigations you are having now. You are so wise to say you will not let cancer rule your life, but I know that is very hard when you are in the thick of things. I try to think of it as something that is happening in my life rather than something that defines me. As you say, there are no magic dates or time frames, we just go week by week and let’s make the most of each and every one and celebrate the here and now. Love Sarah x
Thanks for all the replies. I think I might be like you Roadrunner with the wanting it both ways. Louise, so sorry to hear about your new primary. I hope your treatment goes well. I was dx last year aged 27. Had a lot of nodes involved (20/23) and a delayed diagnosis. I have been thinking a lot lately about whether this delay in diagnosis had meant a worst prognosis for me. You always hear that early detection saves lives but I think I have read in other threads before that a delay doesn’t actually affect the outcome of the cancer. I’m confused? I agree with Seabird, I think I read somewhere that taking tamoxifen any longer than 5 years will not give you any additional benefit. My onc has talked about keeping me on treatment for the next 8-10 years as my cancer was very aggressive. I think he means keeping me on the zoladex. He did mention that if any new drug etc came along of more benefit he would change me to that.
I think the norm for most people is that there’s no benefit of taking Tamoxifen after 5 years. However, I was different and ended up having to see a consultant geneticist (around 8 years ago) and because of my family history and my diagnosis he advised me to stay on Tamoxifen indefinitely, which I did for nearly 10 years (4 months short) before my secondary diagnosis.
Really hard to prove obviously but I’m pretty sure that it slowed things down for all those years.
So sorry to hear of your secondaries. Thanks for the info about the tamoxifen. My bc was very strongly hormone receptive so I will definitely keep your info in mind. I hope you are doing well now.
I was dx 18 years age had lumpectomy and 5 years of tamoxifen then I had a baby at age of 44, Have just had a reccurence in the same breast 18 years later I am now 57, I have had a mastectomy no nodes wide margins and am due to start chemo 6xfec. The way I think now is that there is no point wishing our lives away, this is a unpredictable disease and it can reoccur at any time so I think its a case of moving on and living with it and making the most of our lives on a day to day basis.None of us can predict the future but we have to have confidence in our oncologists that they are doing the best for us.