Hi everyone, hope you’ve all had a good day. Mine’s not been so good. My YD and I met my oncologist today, who seems a nice lady. Told me that I’m TN (knew I couldn’t take tamoxofen, but didn’t know everything else was negative until today) and if I don’t have chemo I’ve got 40% chance of still being alive in 10 years and 55% if I have chemo-shocked as it doesn’t seem very high. I almost wondered if it was worth having chemo, but the radiologist who was there as there was no bcn nurse available, said to us after that 15% difference is quite high and even if cancer does recurr (more chance with TN) there’s lots of treatment available.
Oncologist probably thinks I will need a PET scan as she thinks the lymph node in my breast is probably cancerous. I’m going to have 4 rounds of FEC and 4 of T plus a new drug that’s been trialed which helps stops recurrance/going into bones and 4 weeks of radiotherapy. She said I’m getting gold star treatment!
I feel quite devastated as both the consultants I saw were very upbeat-one said I’d be at my grandchildren’s birthday parties (I haven’t even got any yet) but now my prognosis doesn’t look so good with the given stastics, although I suppose they might have changed as they’re looking at a 10 year survival rate plus as the radiographer said of the 45% that had died, they hadn’t all died of bc and I suppose you don’t know what their health was like prior to getting bc.
Apologies for my long feeling sorry for myself post xxx
Ash Jrncat it is all so overwhelming. But just remember breast cancer care and treatment is advancing evrry day and the odds chage all the time. Stay in the here and now if you can. Sending you a great big hug and i am sure ladybowler will be here with big pants for you very soon xxx
Hi Jencat. That sounds like quite an appintment! Don’t worry about statistics, they’re there to be broken anyway. They’re general figures and like your radiologist said it doesn’t mean beast cancer was the cause of all their deaths. Could have been anything. You gotta remember you are you and not a statistic. It’s mostly out of date data anyway.
Do you have a potential start date for chemo or do you have to let them know your choice first?
Also BC treatment 10 years ago is massively different to now. But you won’t know 10 year survival rates until 10 years from now. A strange thing to quote to you really.
I had a PET scan on Monday they’re nothing to worry about. Just take a book or something because you have to wait an hour from having the injection to having the scan and can’t leave. Scan was about 15-20 minutes long. I get my results tomorrow afternoon. They are using it to check a lymph node under my breast bone as it looked inflamed on normal CT scan.
Hi Jencat ,as the others have said the statistics are not helpful as we are talking about people diagnosed probably 20 years ago to get these 10 year survival rates. And even then they are saying you are more likely to be around in 10 years time than not.
It’s always a lot to take in at these meetings and it takes a little while to process it all. Please don’t worry about chemo…it really isn’t that bad. And it will give you the best possible chance.
Right, step away from the statistics!! To be honest I think they’re hugely unhelpful. Out of date by their very nature given how much cancer treatment has progressed in the past five years and those stats will also include women much older than you, women with other health problems in addition to the cancer and also people who died but not of cancer!!! I’ve never been much of a statistician but honestly can’t see the value of adding them into the mix. Yes, your cancer may be a bit trickier to treat at the moment but there’s new discoveries in treatment all the time. Even though my first chemo sesh wasn’t exactly joyous I’d say what have you got to lose by having it?? Not sure of the full side effects yet but I bet you’ll find the actual procedure not half as bad as you imagined.
Keep your chin up lovely, hopefully it won’t seem so bleak in the morning xxx
Right, step away from the statistics!! To be honest I think they’re hugely unhelpful. Out of date by their very nature given how much cancer treatment has progressed in the past five years and those stats will also include women much older than you, women with other health problems in addition to the cancer and also people who died but not of cancer!!! I’ve never been much of a statistician but honestly can’t see the value of adding them into the mix. Yes, your cancer may be a bit trickier to treat at the moment but there’s new discoveries in treatment all the time. Even though my first chemo sesh wasn’t exactly joyous I’d say what have you got to lose by having it?? Not sure of the full side effects yet but I bet you’ll find the actual procedure not half as bad as you imagined.
Keep your chin up lovely, hopefully it won’t seem so bleak in the morning.
Hi Jencat,
Sorry to hear that after your appointment & that you do not feel as positive as you were expecting to.
But as Jill & Cherry have said, the stats do not necessarily reflect the current situation as I understand they are based on info from 10-20 years ago.
Even so, it still gives the prospect of a very positive outcome with the treatment recommended & there’s no reason why the outcome can’t be even better now.
hugs
ann x
Sorry that your experience today want a good one but like the others have said you are an individual not a statistic and the treatments are getting better all the time. I am surprised that they hadn’t put you in the picture before though, it’s not nice to suddenly get the rug pulled from under you yet again.
Sending you ((((hugs)))) and healing thoughts x
Sending you big hug and kisses Jencat…we are all part of this amazing sisterhood…and together we stand strong to break statistics!..we are all individuals…and amazing ladies.
I’ve had so many messages from wonderful ladies, who on paper should not be here now…but are still rocking it on here!
Rachael x
Jencat!
What a shame the onc gave you statistics which I have never heard of as yet! She did not need to go through that route and just advise you what’s the best treatment plan for you. I think CherryB has said what I want to say about statistics!!! A bit like when the lady who had treatment 14 years ago said having chemo was like being poisoned!!! All treatments are so much more advanced now and they are coming up with new treatment drugs and so many ways to treat side effects now too!!!
Of course you will have chemo as it will help you have a better quality of life and a longer one at that!
We have so much to do!!!
Jencat, try to take one day at a time and prepare yourself now for chemo and think what you need. If you are still worried and can’t settle ring your breast cancer nurse and tell her your concerns. This makes me so angry when they don’t think about rheir patients feelings! They are like robots the way some of them talk! Tbh, life itself is a risk and anything could happen by just walking in the street!
Try to relax and get some sleep and see how you feel tomorrow and get ringing if you need to for a better understanding and peace of mind.
Lots of love.xxx
Woken up early (but feeling ok) apart from a slightly bad back - probably from all those hours sitting in one position in the chemo chair, so thought I’d put my time to good use. Just been googling survival rates (I know, I know) but if you look on reputable sites like CancerResearchUK, who by their very name you would expect to be using the very latest research data, well, their survival data is 2010-11, meaning people who presumably were either diagnosed or finished their treatment in 2000-1. (If it was survival by age that you were given instead of all ages, it’s slightly more up to date but still based on data from at least 5 years ago.)
I think that’s light years ago in terms of the progress in treatment, Jencat. Nearly 18 years!!! If you also look at their breast cancer survival improvement figure for the U.K. that has doubled in the past 40 years. Now that doesn’t mean that we can expect another quarter improvement in the next twenty years but you know you can increase your % slightly before you even do anything!!! The major thing to take into account is co-morbities, if you are otherwise healthy then obviously you have a far better chance than someone who already had a serious illness before they got their cancer diagnosis. Also these figures are not based on counting actual people - there will be a sample cohort which they then model and extrapolate out.
And most importantly, you, my dear Jencat, are a person not a statistic!! Being a stubborn mule I would take my odds as a challenge to prove the medics wrong!!! And obviously as a guide to make sure that I live as healthy a life as possible over the next ten years to stack the odds in my favour.
You can do it, Jencat. The fact that you’re here on this forum, asking questions, taking a proactive and informed role in your diagnosis and treatment would, you’d hope, give you a better chance than those who stick their heads in the sand.
Sorry for the long post but stats are pesky, complicated things. My final thought is that the chance of winning the lottery jackpot in this country is c. 1 in 45 million but millions of people every week fancy those odds - they’d snap your hand off for a 55% chance!!!
So sorry Jencat i have tired to force my team to give me survival rates but they wont be drawn ( i see why now) ive been told to focus on getting to 5 and then 10 years. Was also told tbe healthier you are when you start does help alot as no underlying health conditions. Oncologist also said that UK report everything , where other countries reporting isnt so accurate,which sometimes makes our survival rates not look as good but research is moving foward all the time. But its really tough, i know, my fear too is it coming back.
Sending a big hug. Xx
On day of one of my oncology appointments new stats were released that said uk had quite low survival rates for breast cancer compared to other European countriesand i quizzed my team on this and thats when i was told that uk report everything, apparently other EU countries sometimes disguise or manipulate figures though she did tell me Scandinavian countries have phenomenal survival rates. I was also told so much research goes into breast cancer, everything is changing so quickly and for the better and if you get cancer this one to get!!!
We need to hang in together and beat this horrible disease . C
Hi jencat, my surgeon told me the healthier you are when they first get you ( i was so well just had a lump) the better as they are only fighting cancer which is mostly (i had 1 lymph node affected) contained in an area outwith the main body ss the breast can easily be taken away. He told me he loved getting woman like me in , as he could give me the best possible chance for long term survival. (He is a truly lovely man who put me so at ease but wasnt patronising. )
Hope this helps. X