Chances of survival?

Hi, I haven’t been on this forum for some time. Was diagnosed with BC in June of this year, with what was thought to be a v small BC which has turned out to be a Grade 3 tumour, much bigger than first thought. Had 2 lots of surgery - first op didn’t get clear margin and cancer was stuck to skin around breast. Because of admin probs, ie lost letters etc, haven’t yet had chemo, though this is due to start next Thursday (7 Oct) (3 FEC/3 TAX). Was told by Oncologist last week that one of the tests they did on the tumour, Ki67, was high (43?). Have read about this on the internet and it says ‘poor prognosis’. I’m only 45 and going out of my mind with worry - being told one minute it was a small BC and now it seems it couldn’t get much worse! Know it’s very late but can’t sleep and struggling to eat also. Lost my little boy 2 years ago and am wondering if he wants me to be with him.

Hi Kristian,
I was just going to sign off but saw your post. It is so sad to hear about your little boy and I can’t imagine how hard that must have been and still is for you. I am so sorry. I don’t really know about the tumour details but can’t understand why they would say that to you and not follow it up by explaining their plan and how they would treat it.I think you need to go back to them about this and let them know how anxious you are. They will most likely have seen this before and may be able to give you some more hopeful facts on it. My onc goes bonkers when I demand to know my tumour markers and says they are rubbish until they get to big figures. Research on the net has often indicated worse news from them than he says he believes. Some research is only based on a very small group of people or historic before the third generation of chemo, etc came in. On your side 45 in not far from menopause when you are safer and the chemo will no doubt push you straight through it now.
I really think you are just overloaded with so much sadness but maybe a frank talk with a BCN or the onc and telling them what you have just said to us might be the way forward so they can give their thoughts on it.
Starting Thursday you will have chemo in your veins going to every cell, kicking the bloody cancer up the backside. Try and hang in there and see how it goes. If you read this forum you will know that things don’t always follow the same pattern.
Big cyber hugs and you are never alone
Lily x x

oh Kristain

your post is so sad.

the Ki-67 is only one test out of a number of things which predict your prognosis… things like grade, size, node involvement whether it is affected by hormones etc all play a part… the k1-67 test isnt used routinely and it is a marker… its not diagnostic it just may indicate that in some patients they could have a worse prognosis… but that might not be you.

maybe you need to speak to your GP about how your feeling very often we need a wee course of antidepressants to get us through this and from your post i think this maybe of some help to you.

just wanting to send love and hugs.

Lulu x

Dear Kristian

I am sorry to read that you have been through so much and have all this worry, please call our helpline where you be able to talk through your fears and receive some information about where to go for more help with this. The number is 0808 800 6000, the line is open weekdays 9am to 5pm and Sat 9am to 2pm.

Take care
Lucy

Thank you so much for your replies. I have been assigned a BC nurse from Christies Hosp and may give her a ring, but don’t want to be seen as being a nuisance.
I have a telephone consultation booked tomorrow with my GP and may ask him for some anxiety tablets (unfortunately I tried lots of anti-depressants after losing my little boy but was allergic to them all).
I was also told Lulu that the tumour was 80% oestrogen positive which they thought was a good thing. The cancer was present, but only just, in my ‘sentinal’ node and in fact there was also a small tumour next to the nodes but there were no cells in any of the other nodes they removed.
I’m also going to stop reading things on the Internet - you are right Lucy, it probably doesn’t mean that everyone is in the same boat re prognosis. Thanks everyone for giving me some positivity through this horrible ordeal. I get comfort from speaking to people who are going through the same thing and strangely enough, felt ‘safe’ at The Christie Hosp, knowing we were all in the same boat - as opposed to walking down the street and wanting to shout “who else here other than me has breast cancer” - madness I know! Think I’ll be sectioned before long if I carry on like this!! xx

Hiya Kristian,
Im so sorry that youve got all this to go through after losing your little boy,if you had any faith before it is being tested to the hilt now. The only helpful thing I can say to you(apart from being a Christy success story myself)(I know exactly what you mean about feeling safe there,it was the only place I ever went to without my wig). You say that anti-depressants didnt suit you,I never wanted to try them but the pharmacist recommended Bachs herbal mouth spray,thats not its real name,it might be called rescue remedy,its about £7,worth every penny. I went through a particularly
anxious time when I finished radiotherapy and a couple of squirts of that made me feel it was worth all the treatment. It also helped a friend to control his emotions a little after he first lost his wife,
give it a whirl,all the supermarkets sell it as well as chemists.
I wish you well,its all doable and dont read too much,it`s too scary and everybody is different,good luck and give my love and eternal gratitude to Christys,Hugs Mags xxxxx

Kristien I was so interested when you said about wanting to shout as you walked down the street. “who else here other than me has breast cancer”. It was how I felt when I was first diagnosed and I just wanted to shout ‘I’ve got breast cancer’!!!

Like you I was diagnosed at 45 with a poor prognosis. My breast cancer though it was not known at the time, was her2 positive but herceptin hadnt been ‘invented’. Despite the poor prognosis and several recurrences I have lived with BC for 20 years now. I am telling you this because I hope it will give you some hope.

Dawn
xx

Hi Kristian,
just wondered if you rang your nurse today? You certainly picked a good hospital, one of the best for this so you should rest easy that they will be doing their very best for you. I don’t know how you feel about taking things to help as I have not been through as much as you. However, I sort of think this is a normal reaction and why the hell wouldn’t we feel like shouting, crying and being really scared at times. We all think that and if you can cope then maybe you could just accept that it is ok to feel like this and gradually work your way through it in your own time. Anyway just my way of getting through this and probably not useful.
My other option is to divert my attention by doing something else. I was scared stiff of chemo and imagined it was far worse than the reality. Beforehand i tried to work on having a healthy diet and building myself up ready for the drugs to hit. I got as organised as I could at home, organised people to go with me and then went out and had lunches galore, went to the pictures everything I could think of to give me some happy days to think about while on the sofa! No-one told me I would actually have loads of days doing all these things betwen doses too :).
I couldn’t eat chocolate while on chemo so go eat a ton before it starts!
Hugs
Lily x