Hi, I have just finished 6 months chemo and radiotherapy after second mastectomy for grade 3 stage 2 invasive ductal cancer. There appeared to be no node involvement from the 4 sampled though there was evidence of vascular invasion.
I hear of people being given the “all clear” after treatment, or being told there is “no evidence of disease” or even that they are “in remission”.
So what am I?? I know I am not “cured” but nobody has said anything, I dont have an appointment for follow up with onc for another 2 months. I dont think they are planning any more tests, so how do I describe myself now and why are some people given the all clear etc?
If anyone can help I would be really curious to know what people have been told and why.
Thanks, Rachel
Realised I have posted this in wrong section and have now posted in after treatment has finished, Sorry!!
Can’t really add anything Rachel. I’m finished with bilateral WLE’s and radiotherapy finished about 3 months ago, I’ve a yearly thing with surgeon and 2 yearly with onc. I saw one of my husband’s emails to friends saying I’ve had the ‘all clear’. Nor sure where he got that impression, but then again, who decides and when. I’ll be interested in what others say.
S
The one thing I have learnt from my “journey” through BC is that there is unfortunatley no thing as being “cured”, or reaching the 5 Year timescale … that is because cancers are soo different and BC does have a habit of coming back to bite you on the bum so to speak… years later. However… all that has a major positive, live life for today… not tomorrow, I have done things that I would never have had the confidence or courage to do before BC… and So glad I did. I have had BC twice under the age of 40… still here at 43 and provided the BC doesnt get me in the end… wouldnt change a thing … What doesn’t kill you, only makes you stronger !! xxxxx
I would say you can describe yourself however you like. Some people wil say they are all clear because at that moment in time they are. Some might even say they are cured. Some say finished treatment for bc or having treatment fir bc ESP if your on hormones. Some refer to themselves as survivors. Remission tends to be uses to refer to secondary cancer as it gives the impression it may cone back and we know for the majority this won’t happen. The majority will be cured but I guess the only way you can say that with any certainty is to die years later from something else.
Lulu xxx
It is very hard to say there is no known test which can give you that guarantee, I so wish there was. We have to trust our bodies and that is difficult because we have faced our mortality. Any aches and pains will bring fear when before we would shrug it of… BUT we have been given treatment that can have eradicated it or put it into hibernation. Drugs change all the time and so do we. Some people go on as before others find it difficult. You may want help at sometime so ask for it- counselling is a safe place where you don’t have to be brave.as I am writing this I am trying to convince myself as well
In empathy
Cackles
It’s all very confusing isn’t it. Especially when you read about those in the limelight who tell the world they are cured or in remission. I prefer to say when you have cancer no-one knows if or when it will come back. Hopefully it won’t return but from now on every ache and pain we get we will wonder if it is connected to cancer.
I had chemo and mastectomy in 1989. I passed the 5 year and the 10 year milestone and thought that meant I was all clear but then I found out that I had secondaries in my bones. But because of new treatments and a wonderful team looking after me I have been looked after with secondaries for another 12 years.
Of all the things I have been through my only regret is that I wish I had not wasted time worrying if it will come back, if I was In remission or cured. Whatever is in store for me I know I will just have to deal with it as best I can. Do you know it hasn’t been that bad and I am still enjoying my life. Just so grateful to be here and thankful that I have seen my daughters grow up and spending time with the ones I love. Everyone deals with it in their own way. I hope this helps and doesn’t make you worry even more. Take care. Val
Val shat a super positive posting. I totally agree with you. Life will be lived to the full when the treatment is over. It would be such a waste not to.
I am going to buy a bucket of sand for sticking head into when negative thoughts raise their ugly head.
Have you been to the secondary days at BCC? Also they need user views for future work.
Have a non BC day
Cacklesxxx
Val - I’m in agreeance with you really. I’d say live your life as fully as you can, because we just don’t know ever really once we’ve had cancer. Worrying about it constantly will not change any outcome at all, it won’t make it NOT happen.
I’m prone to worrying a lot by nature, I’ve been changing this over the past few months because you could worry your life away and it’s not going to change what will happen. In fact perhaps stressing over everything is not good for your health either.
I don’t know what to refer to myself as either, same diagnosis as Lulu without any sign of vascular. I’m not “cured”, we won’t know for sure until 5 years past but then even that no guarantee just highly unlikely to happen.
When i go looking for a job though I’m cured
Great thoughts ladies.
No guarantees at all, so lets make the best of it. But hopefully the treatment and the follow-ups will up our chances.
Val - an inspiring story. Are you Scottish enough to come to our wee gatherings in Glasgow??
S
I knew i would get positive and helpfull replies, in future I am not even going to bother asking the oncologists any questions, I am just going to log on and ask you lot!!!
Ive had it twice now (im 42) and 3 young boys to look after 1 of whom was my post cancer baby, unfortunately he turned out to be a pre-cancer baby aswell! I am not even 2 weeks post last chemo, radiation burns are really hurting, sprouty hair and to add insult to injury a bloody great cold sore has just appeared on my lip! I feel like an old achey pensioner so need to snap out of this mindset and wonder if a scan would help me regain some positivity?
There are NO GUARANTEES in life…cancer just reminds us of that fact.
Val, I can relate to your post - thanks.
My husband’s family has always had a saying :
“You die if you worry, you die if you don’t - so why worry at all?”
I try and remind myself of it nowadays.
My attitude/saying is that ‘Life is a risk sport’.
Dx