Hi Nici73 and welcome to our group!
Its so tough dealing with your own diagnosis and also trying to manage the feelings of others. Personally I found it very unhelpful to hear the ”you got this” stuff from people who had no idea what advanced cancer entails. And people telling me my partner was so strong and I could do this because I had them by my side. Made me feel like I was useless and weak, but people usually can’t think of the “right” thing to say so they think they’re encouraging you to be positive and “fight”-something else I hated.
You can say whatever you feel in this group-don’t worry about sounding down or being negative-you can express whatever you want and need to say. Doctors I think are reluctant to commit to firm statements as everyone is unique and reacts differently to treatment. I don’t personally use words like cure and beating the disease, but I appreciate others do, so hope I don’t upset you saying that. I also don’t use the word terminal.
I suppose the real truth is that no-one knows. Stage 4 would be classed as incurable but treatable and everything depends on how well your body responds to chemo and the other treatments you will have. Are you on the chemo cocktail first? A mix of drugs before starting radio? That can have a very good effect on the spread in addition to the primary site, and I have seen ladies do very well on this. It seems like they are throwing everything at the disease for you, and therefore the hope is that you will react well to it.
I wasn’t re staged when my cancer recurred but it was treated as stage 4 -I had spread to my womb and bladder and generally all around in my pelvis-but I didn’t ever focus on a stage number, just getting through everything that needed to be done. I wasn’t always amazingly upbeat and positive-I had some very dark days but just tried to get through one day at a time and not look too far ahead, an hour at a time sometimes. You can’t be strong and positive all the time. There were a couple of occasions I wasn’t expected to make it-when I had a pulmonary embolism, and then my surgery (my story is in my profile if you click my name) but I did make it through, much to doctors astonishment!
There are never any guarantees in life about anything-I’ve seen ladies at stage 4 living for years, and ladies at stage 1 pass away within 2 years. One of my friends is stage 4, still in maintenance treatment 5 years on who has no evidence of disease. She lives a very full life! So it’s possible.
I would just put all my focus on getting through treatment, and not on what might or might happen in the future. Try not to let the fear and worry overwhelm you..I know how easy it is for that to happen. You are living with cancer, getting good treatment, and that’s really all you can say at the moment. But it’s tough and a lonely place to be, I know that.
The group seems a bit quiet at the moment but there is a lovely group of ladies here and I hope some will come along and say hello. Please stay with us and let us know how you’re getting on-there’s always someone to listen.
Sarah xx
I think every one of us is brave. 
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Sarah xx
I’m jumping in now Angela just to say this is NOT your final prognosis! ! You’ve had one scan 3 months out of treatment-nothing is final at this point. I still think you should ask for an explanation of what it means, otherwise you will be forever wondering and stressing. Sorry, I know you asked this question of Julie. Would you feel better with stable and observation?
Sarah xx
I’ve never heard from my gp since I was diagnosed, except for a phone call to see how I was doing. Everything here is dealt with by your consultant in England and you are under the care of your consultant so the gp has no involvement in your care.
You won’t get a prognosis unless you ask for it. I never have, as I don’t want to feel I’m on a countdown clock. I will never ask, even after being through this twice. I can’t ever imagine a scenario where I’d want to know when I was likely to die! I don’t read statistics anyway, as they are immediately out of date, so it would be of no value.
At the end of treatment for me the exact words were “you’ve had a complete radiological response to treatment”. In other words they could not see any cancer. But there are no guarantees. Clearly despite the response to treatment, my cancer was still there but too small to be seen. “Stable but under observation” to me would mean the cancer hasn’t gone yet, but hasn’t got worse.
The usual phrase is “no evidence of disease”, which I would expect a number of ladies have been told unless they need further scans or treatment. I’m sorry you feel you can’t ask-that must make your anxiety even worse. Could you give a family member permission to speak to your consultant or nurse on your behalf?
Sarah xx
