Hi there,
I’m just finished treatment for IDC 2.4cm er+ 4/14 nodes and have had my end of treatment nurse review. I have managed to get through the treatments relatively well physically although mentally it’s been a tough call. At the review the nurse told me I’m high risk of recurrence and or mets which has completely devastated me as I thought my outlook was quite positive. Has anyone had this said to them and know anyone who has lived 10 years plus? I have 2 young kids and want to see them grow up but this has knocked all the hope out of me.
Any help really appreciated xxx
Not 10 years yet but i’m planning to get there… When I was diagnosed in 2012 lots of things went through my mind including my lovely Son would get married and i wouldn’t be there. I then started lookig at research on survival stats 5 yr and 10yr (told myself they were years old and before Tamoxifen 'cos i didn’t like what i was reading) and when the BC Nurse continuously reminded me on positive days that i was Stage 3 with a large (6.5cm) Tumour. I wanted to punch her. Since then i have seen a different Nurse who I felt was much more appropriate.
They have to be honest and i was grateful for that however my Consultant suggested Chemo first as the tumour was large and most likely to have spread. I had 6 x FECT (gruelling) Surgery x 3 then Radiotherapy, I have since had reconstruction and surgery to other side. My treatment took 12 months in all and it turned out to be 6.5cm grade 2 stage 3 with only 1/23 node positive. All nodes removed as tumour was 4cm+
The diagnosis came only 12 months after my first Mammogram, the Consultant was shocked and felt it must have been missed, she requested the Mammogram and it was clear.
So Diagnosed September 2012 and i am just coming up to SIX Years Survivor, due to see the Consultant next week and i think she will discharge me. Since my treatment i have had every therapy known to man, i have really struggled. (I work in Mental Health / have been flogging therapies for years). I do need to have some further corrective surgery but have been too busy living life.
My Son did indeed get married, i went down to part time at work, looked after myself better (More downtime, better diet, less alcohol, more exercise…) I am just changing my Job which i never thought i would do and am so looking forward to a new challenge.
I can only say that i did used to get very angry and then very sad that nobody could give me time frames and my Consultant still only ever says NED (no evidence of disease). I had a lot of therapy to come to terms with the uncertainty following such a diagnosis.
The longer people don’t have recurrance the less likely they are still to be on this site so think it is unlikely we will ever get a true picture of the number of long term survivors. I do consider myself to be one and am grateful for every day, it definately changed my outlook and way of life. I am physically high maintenance. The Receptionist in The Beauty Shop is 60 and had Bi lateral Mastectomy 20 yrs ago. IDC in one breast indicators in the other, She did 5 yrs Tamoxifen at the time and now nothing.
Breast Cancer Care have really good movng forward courses, my local Cancer Care Centre offered complimentary therapies and there are Maggies Centres everywhere, I found all of this very helpful.
Hope this is helpful, please ask anything that you need to know, and surround yourself with kind and positive people. Good Luck with your recovery. Buttterfly xx
Hi there. Been NED for 3 years now. Through my treatment, surgery, chemo, radio I was told due to age, size of tumour, LVI and node involved, I was “high risk.” For me this was something that initially set me back but now I try to put it on one side. This might well be based on stats etc but there are so many individual factors. If this was understood, they would know why we all got breast cancer in the first place!! During my treatment I remember reading some research that women did better if they had a good outlook or in fact were in denial about the future. Can’t find this again and again I am sure that there were lots of individual factors going on but is food for thought. I am looking ahead. Not always easy, but am getting better at this. I too work in mental health and am hoping to change my job in the future. I want to stay here for my family too. I have changed my diet and now run. I raised £1400 for Breast Cancer Care this year for doing sponsored run with some friends. So, keep your good outlook and keep the hope.
Thank you both so much- you have been a life line in a very choppy sea! And totally bizarre but my background is also in mental health, and like you Butterfly, I have been flogging the benefits of various therapies for years. I’ve done a lot of life changing too- gave up work, radically changed my diet, walk about 5 miles a day, reiki, psychologist, creative writing,meditation…if somebody told me to walk upside down on bloody hot coals 4 times a day I’d do it! The psychological impact of this disease is insidious and by far the worst part of it, I can cope with vomiting chemo, surgical pain, radio burn, tamoxifen flushing, but the dripping psychological torture outweighs it all. You are both inspirations and have dropped hope back into my world, thank you, you didn’t have to post but you took time to and I really really appreciate it xxx
Hi jhaslett,
Just wanted to say you are not alone. I was diagnosed 1 yr ago with stage 3(2.5 cm lump and 4 nodes affected) Grade 3, Es +, Her2+ . My oncologist won’t discuss statistics - whenever I ask he says “it’s irrelevant, you just have to be one of the ones who doesn’t get it back!” . In a way it’s reassuring, but coming to the end of active treatment I can’t help trying to figure out the stats! I have two young children who need me to be around at least another 15yrs.
I’m trying counselling at the moment to try and get back on track mentally as I know that’s half the battle. Then it’s trying to live a healthy active lifestyle etc etc. Food for breastcancer web site to look at. Apparently as time goes on survival becomes less of a worry and day to day life and living takes over again,
C x
Hi Cathysid,
Our diagnoses are very similar and I’m totally with you about needing to be around for the kids- mine are young too. You’re right re counseling and the food- anything to give ourselves the best chance possible. I dont know if you’ve had a chance to read Radical Remission by Kelly Anne Turner. I’ve recently come across it and on the dark days it brings hope. It basically identifies all the things that people have done to help survive, it’s quite inspiring. And re food have you seen any of Kris Carr’s books or Chris Wark. They are quite helpful in terms of how to heal with nutrition (albeit I don’t subscribe to their views on conventional treatment)…And then there’s Carole McGiffen- just turned on the tv today and she’s back on Loose Women! She’s 5 years post diagnosis after stage 3 and looking fab! We’ll get there- we have to! Xxx
Hi
i just wanted to say that I’m not sure what benefit the breast care nurse thinks you get from being told you are high risk of reoccurrence or Mets and indeed if she is even correct in that.
My mum and sister both had a larger tumour and similar nodes affected to you and my mum only had hormone therapy back in her day she did not want chemo my sister had 2nd generation chemo
My mum is now 29 years disease free and my sister 14 years disease free I have recently had a double mastectomy myself.
Statistics don’t tell individual stories but even if you went off the stats 90% of women in your position are here 5 years on and still very high proportion after 10 years so the odds are seriously stacked in your favour.
I hope this gives you a lift and maybe the breast care nurse just isn’t the right one for you because if I had a patient who the odds were very likely that you will be here in 10 20 30 plus years I would be encouraging you to get on a live a happy life.
hope this helps
xxx
Hi Sisterly Love- you are a superstar! Thank you so much for this- you are one strong family of women! This has lifted my heart so much, a real ray of hope for lots of us xxx