As I have pointed out this is a vexing issue and each person must use the label/explanation that best suits them. So much rests on whether we see ourselves as ‘cured’ it seems. I cannot use this label with certainty, so therfore choose not too
Neither, am I up for ‘educating’ people about cancer. It gets tiresome explaining, or debunking the ‘myths’ and inaccuracies people believe about cancer. I have other things to do, mainly addressing my children’s fears.
It is also irritating/embarrasing to rebuff those that are ‘nosey’ those who want to know the gruesome ins/outs in great detail. That is why I prefer to keep things as private as possible.
Those, that have cared for me friends/relatives know as much as I know, that is what my sugeon/BCN tells me and what I have picked up from some of the really knowledgable ladies on here
kevinj - If you read my post you will see that I agree with ‘being on the mend’ as a term used to block nosey people. I may use it myself for that purpose.
However, how people respond to the original question is an intensively personal matter for those of us diagnosed; be that primary or secondary.
WS
Floss, it sounds like we are both stuck in the same place! I finished treatment on Sept 1st, thinking that would be it, big smiles, put it behind me and get on with my life. Its much more complicated than that, isnt it?! I do try to do all those things and manage it quite often, but sometimes things creep up on me and I crumble. I am sure that is totally normal after everything we have been through though. I am not dwelling on bc, it doesnt rule my life but equally I feel it is part of my life now even though active treatment has finished.
There is a book someone recommended to me which I have found very helpful. The cancer survivors companion by dr Frances goodhart deals with your feelings and the emotional side of finishing active treatment. I bought it from Amazon and can thoroughly recommend it to anyone.
Helen, I too was ignorant of this disease before I was diagnosed, I think that is true of most people who haven’t been touched by it in some way. I know my work colleagues have been very interested in my diagnosis and treatment (it has never worried me to talk openly about it), in fact one of them said that it has been a learning curve for them too. So, I think they took their lead from me and as I was happy talking about it, they were happy to ask questions. Had I wanted to keep quiet about it, I am sure they would also have done the same. You can only go with how you are and what you are comfortable with. xxx
I found myself saying today ‘so far, so good’ when someone asked how I was, if I had finished treatment and if I had any more treatment to come - it’s a good one for sounding OK without saying anything!! xx
Take it easy - try to think that way - cancer is the same like any other a disease - it can be getting 3, 5 and 10 times, just like the flu or another virus. However, we can also get free of it forever. Do not put cancer on top of all diseases. I was in same situation 2 years ago. I was asking to my doctor why I am still thinking about cancer almost every day. Doctor answered it is just normaly because people are thinking about everything what happened with them (does not matter in good way or in wrong way). It is not like treatment is finished. Is finished only medical treatment. But more active treatment you will start now. Depend how you will treat yourself. Supose to read the book Anti cancer lifestyle (I am not very sure about title of book as I was reading in different language). But I think so that profesor Deivid Servens-Srheibers - who did the book is american or british. The book must be in English as well. There are described his own life and feelings after cancer diagnosis + lots of interesting world-renowned medical research, which he has made in relation to cancer. My doctor suggested to read to better understand the disease. For me it helped.
Stressy Messy The Oxford Dictionary defines the word remission as a temporary diminution of the severity of disease or pain. As nobody can predict whether the disappearance of cancer is temporary or permanent, the word remission is inappropriate. That’s why medics now use the term No evidence of disease.
Wintersocks, you say you are not up for educating people, and find the correction of myths and inaccuracies tiring - and that is obviously your personal choice. My view is that the day we are diagnosed with BC, we automatically become members of a club (whether we want to or not), and as members of the club, we have a duty to educate non-members (to support each other, and to show respect to those members who have lost their lives). Ignorance doesn’t help anybody.
Hi I was told by Oncologist that remission means basically the same as NED (5 years ago so don’t know if views have changed now ). This is also what cancer research say.
What remission means
Remission is a word doctors often use when talking about cancer or leukaemia. It means that after treatment there is no sign of the cancer. You may hear your doctor talk about complete remission and partial remission. Complete remission means that the cancer or leukaemia can’t be detected on scans, X-rays, or blood tests, etc. Doctors sometimes call this a complete response. Partial remission means the treatment has killed some of the cells, but not all. The cancer has shrunk, but can still be seen on scans and doesn’t appear to be growing. The treatment may have stopped the cancer from growing. Or the treatment may have made the cancer smaller so that other treatments are more likely to help, such as surgery or radiotherapy. This is sometimes called a partial response.
Another term doctors use is stable disease. This can mean that the cancer has stayed the same size or it may even have grown by a small amount.
Melxx
This is a tough one realy as none of the currently used terms ( to me anyway)seem to address the situation adequately, Cured is not appropriate ,because there is no current cure for Breast Cancer, (though many people will be cured, we cannot know that for certain untill we grow old and die of other causes).Therefore for me knowing that my cancer could come back,i cannot say that i am cured. Remission ,while meaning there is no detectable signs of the cancer present ,tends to suggest the cancer has gone to sleep but might wake up again at some point in the future, (which can sometimes happen even many yrs later) NED ,which is proberly the most commonly used term nowadays , where no detecable signs of desease are present ,though NED still only refers to that moment in time ,so every check up or mammogram or scan is a constant cause of anxiety. All these terms are confusing for the public because Cured = Gone for Good ,cant/wont come back . Meaning a person thinks your life can go back to normal as its over. Remission = Partial or complete or sleeping, breast cancer can return 5/10/20 yrs later so when this happens the cancer has woke up ,or come out of remission. so a person might ask you" if its in remission, can it come back? NED = No evidence of desease, leading people to conclude incorrectly that your are cured ,as no signs of cancer are present now, So for me pers__onaly, the word i feel most comfortable with is ,i am living with breast cancer, when people ask i say , im doing fine at the moment thanks fingers crossed. though unfortunatly even that can sometimes make people see you as a Pessimist, and not an optimist, so gives way to the positve attitude mantra which can be realy irrateing too.
At the end of the day i quess, we all have to find a way of living our lives having had cancer ,and we will all find whichever way that works for us to achieve that, if we allow the worries and fears to control our lives so much that we live in constant fear, then realy the cancer has already killed us, so i am a realist ,and i have a healthy respect for this vile desease ,but at the same time not allowing it to consume my whole being otherwise there would be no enjoyment left in my in life.
I realy think the media is the main culprit for using the “Cured” word therefor not helping in educateing the public , unfortunaly ,that ultimately makes for all the myths and confusion surrounding BC.
Lemongrove, so glad to see you back!
Linda x
Hi
I’m coming up to 5 years out from dx and my friends & family are in ‘party mood’, celebrating that I’m clear now. I know I’m not!
ER+ and there’s no ‘clear’. Yes, I’m thankful to get to 5 years but I know the worry isn’t over. The media portrays all cancer (it seems) to be clear after 5 years. We know better.
As far as I’m concerned ‘I’m in remission’. That’s what I tell everyone. But the worry never stops.
xx
Hi
I’m coming up to 5 years out from dx and my friends & family are in ‘party mood’, celebrating that I’m clear now. I know I’m not!
ER+ and there’s no ‘clear’. Yes, I’m thankful to get to 5 years but I know the worry isn’t over. The media portrays all cancer (it seems) to be clear after 5 years. We know better.
As far as I’m concerned ‘I’m in remission’. That’s what I tell everyone. But the worry never stops.
xx
I think Maltomlin, Remission is proberly a good word and although not much used now, as at least it does imply that there is still a possibilty that the cancer could return so the public should be more awear when that term is used. So pleased to hear that your coming up to 5 yrs since Dx, i think we were both dx around the same time in 2007 and both on the Tact2 Trial? unfortunatly for me i was re Dx last March with a new primary in my opposite breast so i am back on the treatment rollercoaster , i was re Dx one week after being discharged after a mammo call back ,so i quess for me it will be quite hard to ever feel totally safe again.Have had no further news from Tact2 yet, have you?
Linda x
OMG I’m so sorry Cornishgirl. I remember you from the tact2 trial and the boards. I hope you’re doing ok. I know I don’t think any of us feel SAFE but I’m so sorry that you were dx so soon after treatment. We look at the prognosis statistics and always see ourselves on the ‘right side’.
I’ve had no feedback from the tact2 trial. Which arm were you on? I was on the accelerated Epi (every 2 weeks) + Xeloda.
Please message me as I’ve no idea how to message you! Chemo brain reigns!
I think remission is the most accurate word, because all chronic diseases have periods of remission. There are asthma, diabetes, cardiovascular diseases, cancer etc. Sometimes these diseases in remission is much shorter than the cancer. It is hard to keep this way but it is possible.
Hi all
Great to read all your posts as I was just thinking the same thing. I have my last radiotherapy session on Monday and then that is it. Although I’m sat here worrying what on earth “it” is. I’m surprised how scared I am feeling about moving on, when I should be celebrating.
I was absolutely shocked at my last radiology review to find out that after my last session on Monday, that is it, I am totally abandoned and as far as the hospital is concerned finished and done. I was expecting a final reveiw meeting with my oncologist, surely they need to tell me what happends next?? Maybe I’m being daft and should be thankful its all over, but I need someone to tell me that - that the cancer is all gone and I can go and get on with my life.
Did anyone else find themselves in this position?
And yes - I have requested a review meeting, I have questions. Just waiting to find out who with, I suspect it’ll be the breast care nurse rather than my oncologist, they are so busy apparently…
Vx
True Maire, though I have to say in the bc circles I move in West Scotland we are all very happy to be NEDettes! In a FB converation we redefined CHAV as ‘Cancer Has All Vanished’ and decided we wanted to be chavs too!
VJ, that’s apalling! I was initially seen 3 monthly post treatment, alternating the oncologist and breast surgeon. Now, 2 years post diagnosis, I’m still getting seen 6 monthly, though I anticipate that to drop to annually in August after my next mammo…
My oncologist uses the word “cured” - and says that even if you have a recurrence of breast cancer on the other side, go through the same treatment (surgery, chemo, rads), you may be cured again. I certainly know one old lady (now 90) who had her first mastectomy in 1988, second many years later, and is still going strong loads of years after that. She would say she was “cured” both times. I guess the word cure doeson’t mean that something won’t come back, it means that you don’t have it any more and you are feeling OK. (perhaps?)
Cured and NED in that sense can both mean the same…To me, “In remission” kind of smacks that we are expecting it to come back, so I don’t use that term… but then, I don’t use any term… People ask if “everything’s OK now” and I say it is…
GIJane, has your Oncologist put the term you are cured in writing? Hopefully you are cured, and obviously, many primary BC’s can be cured because many survive, but nobody can say you definitely are cured, because cells can remain undetected.
