From 10 years to 5 years disease free, confused!

Hi, had great results after surgery, grade 2, clear margins and sentinel lymph node clear. My surgeon said with radiotherapy I had a good chance of ten years free of the disease.
Oncologist on Monday told me I’d got vascular invasion and with radiotherapy I would have five years clear but chemo would give me another 5%. Have read the messages about percentages but to be honest I’m still no clearer.
I’ve opted for chemo because I had to decide there and then but I’m scared I made the wrong decision.I don’t understand why on “results day” I wasn’t told about the vascular invasion or how that would affect treatment, wish they’d told me,it would have given me time to think things through.
I know none of you can tell me what I should do. I have my first chemo on Jan 6th and just any thoughts or advice would be welcome.
kate x

i, sorry im not sure i understand what they have told you either. i do know that if you have vascular invasion that chemo does add to your percentage and i would say if they advise it then go for it, phew cant believe im saying that but i would do what i had to when i found out to improve my odds but thats a total personal decision. maybe you should ask them to explain the vascular invasion bit cos Im not totally sure what it means or whey they cant tell you about it with your results.

Good luck, really hope you get some answers to help you move forward. Chemo isnt easy but then its also the fear of the unknown that is the hardest, once you are in chemo you are sort of going along with it, afterwards it hits you how much you have done xx

Hi Kate, I am sure you have made the right decision but if you are at all concerned why not phone the Breast Care Nurse at the hospital and have a chat with her? Or if you have a Maggie Centre near by you could pop in there and speak to one of the nursing staff. If they cannot help they may give you the name of someone in the hospital who can. Or you could phone your surgeon’s secretary and perhaps someone will call you back.
There are always doubts involved when making any decision but I have had chemo many times and it has kept me going each time. I have had BC for 20 years now so I know what I am talking about. I really wish you well. Keep in touch with us here and let us know how you are coping. Enjoy Christmas if you can and try to put your worries away in a corner until January 6th. Not easy I know. I hope all goes well for you. Percentages don’t mean much to me. I was given a 50%chance of surviving 2 years and that was 10 years ago. You could be oe of the lucky ones…like me. Love Val XX

Hi Kate

If you would like to talk through your concerns please give the BCC helpline a call. Here you are to talk to one of our trained members of staff who will offer you a listening ear as well as support and information if required. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 9am to 2pm.

I hope this helps.

Kind regards
Sam (BCC Facilitator)

Hi Kate, I was diagnosed with a grade 3 with 1 pos node but the amount of vascular invasion was off the richter scale - I was even called back half way through chemo to check that it hadn’t spread already! I was given after chemo and rads 35%-45% chance of 5yr survival. I’ve just had my 6th yearly check up and been told they no longer need to see me at the breast clinic. I would say that chemo is the best way forward for you, and am sure thats why I’m still very much here now!
Josie xx

I cant help a lot but I do know that some doctors talk in terms of percentage chance of 5 yr survival and some of 10.I think it varies not because of your prognosis but your doctor’s choice.If you went back to the surgeon he would probably still give you a 10 yr figure.Until recently the stats were always given for 5 yrs but now,with new treatments it tends to be 10.
Good Luck

Hi there,
I think I have similar results to you and they told me that chemo would give me a estimated extra 5% survival advantage/ 10 years too so am stating chemo in jan too. I also had vasuclar invasion which I was v worried about but the oncologist didnt seem to think it was that significant, ( although I have read otherwise on the internet, dont really know what to thing as it all seems so random anyway). I think Drs often use the computer model and put in size/ no of nodes affected +/- oestrigen etc. etc. which gives a % reduction in risk according to what treatment you have on 10 year prognosis so that may be what they were talking about. I think a 5% reduction is worth taking the chemo for. if its useful to chat then let me know as we will be going through things at a similar time- what chemo are you having
Hope you are feeling better about things by now?

Hi, I would echo what others have said and discuss it with your BCN.

When I was dx in 2004, I decided not to ask for stastic’s and just told them to tell me I had a chance, which they did. Then after all my treatment, Mx, Chemo and radiotherapy, I made an appointment with my BCN and she gave me a complete breakdown of what made up my percentage of 50 percent 5 year survial/clear rate. Without any treatment after surgery, my stats were 13 percent. Which I found pretty shocking. I was just told that 10 year stats wasn’t very good. Which I decided to accept blindly again.

My cousin had 73 percent 10 year still clear after her surgery, but was offered chemo which added and extra 3 percent. She took the chemo.

I guess it depends on how much you believe in the stats. I’m probably out of date now with my information.

I wish you well and hope someone can answer your questions.

I do know that for triple negative bc it is worth having chemo as there is nothing else and tnbc responds particularly well to chemo.

I was diagnosed with tnbc following a lumpectomy in Novemeber and axilary clearence in December. Last week I had my first appt with my oncologist. I was fully prepared to sign on the dotted line when I went into the appointment and start chemo ASAP, until the stats were quoted. 55% chance of recurrence in the next 5 years with no treatment, which is reduced by 15% with chemo. That’s still a 47% (15% of 55% = 8% risk reduction overall) risk of recurrence. I don’t know what I expected, but had thought the risk reduction would be much more than this.

To be honest, I am now really confused. Are those stats based on someone of my age with tnbc or on a group of bc suffers of all ages with any form of bc and a multitude of other underlying health problems?

I have signed the consent form for chemo, but understand I can back out if I am not sure. In the mean time I want to find out more, talk to my BCN, go back to the oncologist and talk to friends who have gone through BC & come out the other side.

Positive mental attitude is really important to me and I need to be convinced that I am doing the right thing. I’m aware of the SEs during treatment & ready to face them, but concerned about the effect they will have on my family. The long term effects also worry me, will having chemo create other health problems without significantly reducing the risk of bc recurring?

15%,8% imagine 100 women in a room-by having chemo 8 more will avoid recurrence compared to those who refuse it.Wouldnt you want the chance to be one of those 8.With tnbc recurrences,especially mets,are far harder to treat than with hormone or Her2+ bc.The average life expectancy for tnbc after a secondary dx is about a third as long as those others.Throw all there is at the primary and hope for the best.