Recurrence rates

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Hi All

I haven’t been on here for a while but had a pretty depressing appointment with my oncologist at my latest annual check and wanted some advice/info/reassurance.

I was diagnosed with IDC in 2007 when I was 28. It was a large 8cm tumour, in 14/25 nodes and was ER/PR negative but HER2 positive. I had full mastectomy and node clearance, chemo, rads and herceptin for a year. I was told subsequently I was in the menopause, but went on to have my beautiful precious boy in March 2012.

I have been clear ever since, touch everything wooden in sight. At the time of my diagnosis I had an amazing oncologist who was positive - talked about getting me well to live and long, healthy, happy life and refused to talk stats with me as in his words “You’re either 100% one thing or the other and you won’t know til you get there.” 

At this appointment (where all my scans were once again clear) my oncologist took it upon herself to stress what a terribly high risk of recurrence I had, that the risk would always be there and to make sure I incoporated it into life decisions ie making sure my partner would be able to bring up our son should anything happen to me. I told her that I had deliberately never had this conversation that I was trying my best to be healthy and that of course my partner and I had talked about it. For God’s Sake this bloody disease is who I am now, I’ve carried this worry and fear (increased a million fold since becoming a mother) every second of every day for the last nearly 7 years.

So - now I keep obsessing about my risk and I don’t want to. Am I being totally naive to think that the passage of time is a good thing here and there is actually hope I could stay healthy? I don’t want to be an idiot in all this.

Thanks  in advance for all your advice and support

Liz xx

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Wow Liz, some commnents from your oncologist !

What can i say? Do the medical team have  a crystal ball? Can they see into the future? Do ANY of us know our fate?

 

There is PLENTY of hope in being healthy, plenty… You are well now, your scans are clear and you are living in the land of NED with me and lots of other women. The fear and the anxiety, it is always going to be there i think, because BC is now  part of who we are. But, we must live our lives, as though the cancer will never return. To live life any other way, means the cancer has won. 

I have a thread on this section about fear and anxiety and i admit, i do get scared. But like you, i am also a mother (of 2 lovely children) who need me, so for most of the time, i do what mums do. I work, do school runs, cook tea and all of that stuff. But sometimes, i get struck down with the ‘what ifs’ and my brain rambles. So, i bring myself back to the present - the ‘here and now’ and i carry on.

 

The passage of time is a very good thing Liz. I live by this also. I am in my 4 th year of NED (touch all things wooden) and that is all i can ask for.

 

You are not an idiot, but an  intelliegent, courageous woman, who has lived in fear for many years.

It takes some doing to let go of the fear, but take baby steps… I live my life day by day and start again the next. I am learning how to cherish life and all that it has to offer me.

 

Why has the oncologist said this to you now??

 

I wish you a long long and happy life Liz.

Take care

 

Naz xxx

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P.S  Liz,  just wanted to ask. Has your oncologist ever walked your path?? Unless she has, she will have NO idea how those commnets will affect you and your confidence!

 

They may be qualifed in the field of oncology but, some of them have the people skills of a bird1 Grrhhh…

 

Take care

Naz x

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Hi Liz,

 

This different oncologist has no idea how to talk to cancer patients at all. 

 

I had ductal invasive, very strongly ER and PR positive. 1/3 nodes proved positive, had mx, chemo and now on Anastrazole.  When I was having to think about RADS,  I asked what my risk of recurrence was without them. I was told less than 20% in my chest and 50% in my nodes, for which I could have ANC. That was enough to reassure me that I didn’t need (or want ) Rads.  

 

OK, I might get a recurrence, I might get a new primary,  I might not. I might get knocked down by a bus tomorrow!! I try not to think about it. As for whether the passage of time is a good thing, can anyone ever really know the answer to that?  And you are NOT an idiot. If you were, you wouldn’t even be worrying about this.

 

poemsgalore xx

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Hi Liz,

After reading your post I wondered if you have seen BCC’s related links to this subject, so I have put you the link below.  Our helpline staff are also at hand for emotional support as well as practical help and support so please don’t hesitate to give them a ring.  Calls are free, 0808 800 6000.

breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer/worried-about-it-coming-back

Take care,

Jo, Moderator

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Liz - I have had a very similar experience to your own in terms of less than positive comments from some of my BC team over the years. Every annual mammogram my breast radiologist sucks her cheeks  in and says she ‘can’t take a risk with me’. The breast surgeon reminds me that ‘blips’can occur years after diagnosis and my oncologist makes throw away comments like’ You had a very nasty cancer’, ‘Your tumour was bigger than we like…’  They tell us to go away and get on with life, while at the same time (unnecessarily in my view) reminding us of our mortality (as if we can forget) and to stay vigilant. I was secretly a little smug ( not proud) when one of the radiographers who over the years had been patronising and business like in her dealings with me, was diagnosed herself. She had the good grace to say,’ Now I understand the fear’.  A lady who was diagnosed with me had a 7cm, grade 3, triple neg, 14 pos nodes and we are both 10 year post diagnosis, so hang on to the knowledge that there are people out there who are quietly doing well. I let my ‘team’ know they do not need to manage my expectations, I’m quite proficient at depressing myself from time to time and don’t need their help to do it. They probably think I am a prickly old bag, but hey ho!

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Thanks so much everyone I am glad I am not going mad…feels like it sometimes! I totally agree that we do not need lessons on how to be realistic about all this. That was what made me so cross - I don’t need grounding about the realities of all this. We have to live with the shock of it all and find a way to move on as best we can. Naz she has not walked our path and I totally agree! I shall now get back to living and loving life and park all this in the back of my mind where it belongs!! Health and happiness everyone xxx

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Hi Liz,

I am now where you were 7 years ago. I’m having neoadjuvant chemo and haven’t been told (or dared to ask) too many details, but I know my tumour is very large (guessing a similar size to yours) and enlarged nodes are visible on MRI although I won’t know how many until after surgery. Er/pr+ but HER2-. I made the mistake of having a look at survival stats on NHS predict and have scared myself into a terrible state - I have 3 young children.

I scour this site for inspirational stories of women with a similar dx to mine but don’t find too many. I know this isn’t of much help to you (and may even fall into the “annoying things people say” category) but you have given me so much hope. Does your insensitive onc know that you are inspirational to people like me? I am really scared nearly all the time and the fact that you are getting on with your life without letting the fear get to you is something good, not silly at all. I hope I can get to that point one day (although I can’t imagine it at the moment). You are a survivor and now you have your beautiful boy to focus on.

This is at a tangent to this thread, but do you have any tips or recommendations for someone like me on anything you think may have contributed to you doing well?

Wishing you continued health and happiness xx

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Morning Fimbo

It is one of the nicest things people say and not annoying at all. When I was in your shoes I did exactly the same and I found women on here loving life years after diagnosis and it helped me hope. I had a fab oncologist who always focused on the future. His attitude to stats was that they had made more discoveries in the treatment of bc in the last five years than they had in the last 50 so anything he told me would be out of date anyway so I was better to focus on doing what I could and not depressing myself.

I always knew it was a bummer my nodes were involved but honestly I really believe that you can look at all the stats in the world and they won’t tell you how your cancer will react to your treatment plan.

My approach in your shoes was to do everything I was told, stay as healthy as I could and do lots of fun things. And make plans for more fun things! A friend of family member came to each chemo and because I didn’t feel too crap til a few days later we would go out for lunch or sthg after. Even now whenever I have a check I build in a little treat to myself!

I didn’t do anything too radical with diet as my bCN told me it wasn’t that sensible but I bought a juicer tried to up my fruit and veg, cut out booze while having chemo to give liver a rest and ate whole grains etc stuff to try to keep me healthy. Fresh air, walks, tried to find the funny side! And when I was terrified lay on the bathroom floor for a bit and let myself be scared then made myself get up and out there again.

You can do this Fimbo. I also found after treatment tough as you don’t have that routine of doing something to this bloody disease and just had to hope it had buggered off so I had some counselling then. I found if nothing else it helped to talk to someone who didn’t love me as (pretty much like you I imagine) that was the hardest part for me.

Practical things with chemo:

  • you don’t need to be sick and if you are get them to up the anti emetics.
  • don’t go swimming - I did and caught a cold and my onc thought I had totally lost my marbles!
  • take all the drugs you can they recommend them for a reason
  • be kind to yourself

Good luck am here if you need support as are many other fabulous ladies who inspired me

Love xxx

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Thank you so much Liz - you had posted about your fears and here you are helping me with mine! I’m good at doing all the fresh air / good diet / exercise stuff, but the having fun has been taking too much of a back seat as I’ve been feeling really down and self obsessed. Resolution made right now to live my life and have more fun!

Love to you xxx

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And mine also Fimbo!

xxx

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I’m two years down the line from primary DX (7cm tumour, 7 nodes affected, ER pos, HER2 pos) and currently doing very well.  I can relate to the negative comments too.  On the day the breats surgeon sribbled all over my breast a couple of hours before MX (had neo adj chemo) we discussed survival stats.  I said I would hope it’s around 65%, he said to me “that’s a bit too optimistic, maybe for five years, but not for 10”.   On another occassion the onc told me (and I even didn’t ask her), I’m at high risk of the cancer coming back.  One day she said to me she knows it’s difficult for me. A few months ago I heard she had a MX herself, diagnosed with BC, I guess her age under 40.  I feel sad for her, but I have to say, now she KNOWS how it feels and how difficult it is.

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I thought of this thread yesterday after my first post-treatment oncology appointment. I had been feeling increasingly good and positive (wobbles of course but nothing too major). I’m being really good with my diet and enjoying all the new tastes I’m trying, I’ve been doing some running with the NHS choices couch to 5k plan, been meditating and taking one day at a time. Believing that sometimes all these things can heal us against the odds, or at least keep the cancer at bay. So I was feeling good as I went in to my appointment.
I came out in a terrible state. Phrases I remember him saying included “You are at high risk of disease”, “There is no denying that a heavy burden of disease remained even after chemo” (I was disappointed in my response to neo-adjuvant chemo) and the really difficult one “You are at more risk of metastatic disease than of a recurrence in the breast”.
I’m not stupid, I knew all this - why did he need to say it like that? I hadn’t even been asking. I came home and cried for 3 hours solid. Today I feel a mixture of upset, scared and incredibly annoyed with my onc. I’m trying to rationalise his comments - he might say all that to any of his patients with node positive BC and lots of people do well, maybe he wasn’t thinking straight (my appointment was 2 hours late at the end of his clinic and he must have been tired), he doesn’t know me and how determined I am to do everything I can to fight this, he was just trying to say how he would need to keep a close eye on me etc etc but it’s tough to get his voice out of my head.
Why do they do this to us instead of helping us live our lives in hope?
Sorry for rambling on but I needed to get that out of my system (and some reassurance if there is any).
Love to everyone x

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I fumed when I read your letter. We all know the risk is there, you didn’t need that. Yes the passage of time is good. I had a lumpectomy last summer and I HATE these people who want you to spend the rest of your life being afraid. The way I look at it, anyone might be run over by a bus tomorrow, we don’t go around waiting for it! You’ve sorted things out in case, that’s all you need. I wonder if she’s made you depressed, (not surprising), it might be good to talk to some-one qualified about it, but NOT HER! I do feel for you. You’ve done so well, I cannot understand why she kept on. Don’t let her get you down. You will make it.

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Hi NAZ and Fortuna,
Thanks for your replies. I think I am puzzled by my own response as much as I’m annoyed by my onc. I know part of his job is to assess risks and that was what he was doing. His words don’t change what might or might not happen, so why am I so upset by them? I think I had already started living for each day, without thinking about this cloud hanging over me all the time. It had taken a lot of hard work for me to get to that point, and now I’m back to worrying about the future again. I suppose having got to that good mental state once before I can get there again, it’s just a setback.

Wishing all of you health and peace xx