I am 18 months post diagnosis and have been for the muga scan as I am on herceptin. I was chatting to breast care nurse and feeling a bit down. What I want someone to tell me is that I am cured and must admit that I have never got down to the nitty gritty and asked for the full report hence the ostrich… I find out today that I had some dcis. Do you think that the nurses/doctors/oncs can tell if you are the type of person who should find out slowly over time. I nearly jumped for joy when told I could have herceptin, thought that was good…well it is I suppose but would rather not have had to need it!! then found out three months later I had vascular invasion. Now as well as a whopping tumour I had also dcis. I had a shock after shock as I came on here over the months and found out that I was not going to be cured The bc nurses they were aiming for a cure. Then was told I was lucky only in 4 lymph nodes. drip drip drip… bloody hell !!! I wish that someone had laid it on the line at the very beginning… I feel like I would have ben further on mentally if I had known more initially. It is only because I have asked questions that I have learnt about these other things. Oh I don’t think I’ll post this I,m rambling wish I could be more clear and concise now I’m feeling sorry for myself. I’ll bet if I ask bc nurse if I have gormett ruttle she’ll say yes huh!!! Sorry for moaning especially as so much sadness at the moment on here love to you all thanks for listening Eileen
Hi eileen
Moan away thats what were here for and we’ve all done it on here at some point. Getting information in small doses must be hard, Iam the type of person who likes to know upfront whats happening that is because iam a bit of a control freak like to be in control of whats happening. And what they dont tell me I find out on the web… Different people deal with news in different ways. But unless you ask they wont tell you. But do I want to know the odds of beating this I dont know, That is a decision i will take after my treatment has ended all I can say is that I take one day at a time and somehow get through this with as much dignity as I can without losing too many friends along the way. it is amazing the strength you find during this and possibly afterward to the fact that I am proud to say I stand beside you all in fighting this terrible desease No one can understand what you are going through unless you have been through it yourself so thats why we are all here for both help and support with people who care and understand what your going through so never apologise for moaning .
luv and hugs
Joanne
Hi Eileen
Sorry you are feeling this way at the moment. The complexity of breast cancer, and all the different treatments means that most of us start out with a little knowledge, and gradually get to know more, both about our own diagnosis, and the disease in general. Although this can be hard I think that the enormity of it all would just be too much to take in all in one go. Having said that, it sounds as though you were in a situation where someone did not go through your pathology result with you in a step by step way, and that has made it hard for you.
I just want to say something about “curing” breast cancer, and your comment that that is what the breast cancer nurses are aiming for, but that you have read here that that will never happen. The large majority of women who are diagnosed with breast cancer are treated for it, and it never recurs, and they eventually die of something else. In this respect, you could call them cured. The difficulty is that there is no absolute way of knowing who the women are for whom this is the case, and who the women are who will experience recurrences, or secondaries. There are women who are at higher or lower risk, but then we are in the realm of statistics again, which never helps if you fall on the wrong side. So there are very many of us who are in all likelyhood “cured”, but we just can’t be 100 per cent certain. It is that slight doubt that each and every one of us has to come to terms with in their own way. My own approach is that I am not going to waste any of my life worrying about the “what if’s” - my breast cancer has been treated, and I am moving on. If I ever have to face it again, then I will at the time. There is an interesting thread on what people say after they have been treated - whether cured, no evidence of disease, breast cancer survivor, living with breast cancer, whatever.
You’re not rambling, or moaning, just trying to get to grips with the enormity and uncertainty of it all. You are in good company here! Very best of luck and please keep posting. Love Sarah x
When I was diagnosed I needed to receive information in small doses, as little as possible really … the shock of having bc was devastating in itself. Then being told that it was not curable (had already spread to bones). Thankfully I responded well to treatment and am almost 2 years post diagnosis. I’ve never asked about my statistics/prognosis - I don’t feel I need to, if my treatment stops working I’ll have to reconsider, but we all live with uncertainty, such is life!
It’s good to share our concerns, moans, hopes, fears and encouragements on this forum, with others who have experienced breast cancer.
Hi Eileen
I think the whole problem of what to ‘know’ at what stage of living with cancer is fraught with difficulties.
In general I think most medics wait to be asked and even then they can drip feed, or be straightforward. Sometimes their reluctance to talk is a genuine reflection of what they feel their pateints want, sometimes its about their own fears and denial.
Broadly I have always wanted information and so asked my oncologist the day after I was diagnosed what my 5 years survival stats were likley to be, and what difference having chemo would make. Bless him, he told me truthfully…his style matched mine but I know other patients who disliked him and nicknamed him Dr Death.
As Seabird says breast cancer is very complex, and there is not one kind of breast cancer but many. Some of us do have poorer prognoses from the beginning, but equally some with good prognoses get quick recurrences and some with poorer prognoses are fine for years. Then when you actually get the recurrence you were dreading there’s a whole new ball game of not knowing how long you’ve got, cause some people with mets die very quickly and some live for years.
I don’t agree with you Seabird that ‘the vast majority’ of people with breast cancer will recover and die of something else. There aren’t any accurate statitsics about how many women diagnosed with breast cancer will eventually get recurrences and die of the diseae but it is probably between on third and one half (NICE says a half…but that may be outdated.)
I think each of us just has to learn to live with uncertainty…the uncertainty of whether the cancer will ‘come back’, where it will recur, how effective the treatments will be if it does recur etc etc. I think the time immediately after treatment finishes is perhaps the toughest as you get used to living with a life threatneing disease.
I don’t see thinking about the future and my demise as ‘wasting my life’. I see it as integrating the reality of my death…almost certainly from breast cancer…into the fabric of my life…not an easy thing to do…but at simplest level for me it involves not worrying about overspending on lunches out becasue I haven’t got a long future to save for.
I don’t these days ask my onc about how long I have…becasue I know she will say she simply doesn’t know. If it goes pear shaped for me could like any of us with breast cancer be dead in 6 months. I don’t think I will be but equally I don’t think I’ll be here in 5 years time either.
I don’t do fighting, thinking positive or bravery around cancer…I simply try best I can to live with it and hope for the best that with the help of treatments and palliative drugs that when it all gets worse I’ll manage as pain free and easy a death as possible.
I know the bad sad stories and the good ones…like some of the women who got herceptin back in 2004/2005 with poor prognoses doing really well now. I try to hold the good and the bad stories in balance, (and I think given my bad prognosis at the start I’m doing pretty well to be here nearly 5 years later…I wouldn’t have said taht on the day of diagnosis) and just hope for the best it can possibly be without wishing for the impossible. (though I do that sometimes too.)
best wishes
Jane
HI
I asked my oncologist (well her registrar) last week for my prognosis. I had already done this last year to another registrar who fobbed me off to be honest. I didn’t get an answer and that sets my mind off. I deal better when I have the full facts. I was happy to be having Herceptin but when 2 weeks later I realised WHY I was having it I got quite depressed, nobody explained the full facts.
Anyway - the registrar mentioned the Adjuvant Online and went away to put the information into the computer. Thinking she would come back with a print out I sat and waited. When she came back all she said was - well at the beginning of all this doctor told you it wasn’t good (Grade 3, tumour 6cms, 8/14 nodes involved, HER2) but with chemo and radiotherapy your chances have doubled - then quickly changed the subject (or could be me thinking she did - you know what its like) BUT doubled from what ???
Liz xx
Liz
You can go into adjuvant! online yourself. You just have to tick a box to say you are a doctor. I said I was a medical student I think. I’ve used the site occasionally for 4 years and no one has ever found me out! But be warned…the colourful charts can be a bit depressing (and I don’t think adjuvant! yet takes account of her2 status because too early to have 5 year stats.)
best wishes
Jane
Thanks Jane - will do. Having Herceptin does give a better chance so will it be 5 or 10 years do you think when they will include those figures ?
Somebody gave me the Nottingham Prognostic Index which gave me a score of 7.2 which anything above 5 is not good !!
I know you have to live each day but it’s always, always in the back of my mind how long have I got and I know the medics can’t give answers but a clue would be nice. It’s the feeling that they didn’t want to discuss it with me that makes me worse. If they had come with something more “concrete” I would deal with it better.
Thanks
Liz xx
Hi Jane
My “large majority” came from the Breast Cancer Research press statement of 10 October 2005 which stated that 64 per cent of women newly diagnosed with breast cancer are expected to have a 20 year survival rate. That’s given the treatments we have now. I have been told by oncologists that after the 20 year mark the graph flattens, but can’t find any evidence to support that at the moment. Think I can just about stand by my statement, although “large majority” should perhaps just have been “majority”! Let’s hope that twenty years from now there will be vast improvements in the prevention and treatment of breast cancer. (Must go back to bed now, after a rather fruitless internet search - as you say figures are VERY hard to come by). Best wishes. Sarah (I don’t tend to do figures, just “realistic hope”, but I would hate to mislead anyone). This might not be a very good posting, 2.00 am now and should be dreaming sweet dreams not looking up breast cancer statistics!!
Here’s the link to the NICE document that gives mets stats:
nice.org.uk/guidance/index.jsp?action=byID&o=11731
Go down to the bottom - key documents and click on the 2nd document - Laptinib - final scope. It says:
Between 16% and 20% of women presenting with breast cancer have advanced disease with distant metastases (5,750 to 7,200 women). Approximately 40-50% of women presenting with early or localised breast cancer will eventually develop metastatic breast cancer.
Food for thought.
Jane
I tend to agree with seabird and dont think your comments were misleading, just this morning i recieved a leaflet from the Insitute of Cancer Research which quotes.
In 1986 only 55% of patients Dx with breast cancer survived for 10 yrs or more.
Now ,almost 70% of patients Dx with breast cancer survive for 20 yrs or more.
Breast cancer treatments are improveing all the time , even in the last couple of yrs
Best wishes
Lindiloo x.
I asked my Onc for my prognosis and stats. She said that she didn’t have that information to hand ! I don’t know if she genuinely meant this or did not want to tell me. At my next meeting with her, she got out of the room before I had a chance to ask any questions !! I have looked at the adjuvant site but have not had the bottle to go onto it yet. I know I have a potentially life threatening disease and that the future is uncertain but I don’t know if stats will help me. I want to be well informed but not to scare myself to death. I want to be realistic and not fall into the 'positive,brave etc’trap. i am confused.
Eileen - If you have read this far, I am sorry that my answer to you, which I hoped would be helpful, has started a run of postings that are probably the last thing you want to read.
Jane - Ouch! (but thank you).
Lindiloo - Yes, thankfully breast cancer treatments are improving all the time. We clearly have a long way to go, further than I had truthfully realised.
My last radiotherapy tomorrow, after WLE and chemo. Might hold the champagne. Oh damn it, make that two bottles! Sarah
Sarah, thanks for your reply it was helpful, and congratulations on it being the last rad tomorrow. yippeee but enter the scary time of feeling a bit adrift when treatment ends… see on a downer still. lol I will buck up shortly and be my cheerful self. love to anyone out there still up Eileen
the latest cancer research stats have been done by the institute of tropical medicine I seem to remember not sure why tropical medicine is involved, but they use a different statistical method from earlier stats, in that they extrapolate forward using more recent data to compensate for better treatments being available in recent years.
Personally I would rather data was based on following up women and knowing when they died and using this. Statisticans will say this will come out with a more conservative result which they will argue is unnecessarily gloomy.
In the 1970s they reckon half of women who got breast cancer died of it, so I suppose anything better than that is a bonus. I’ve recently been doing my family history and come upon two women in their 80s diagnosed in the mid 1970s who are still alive so there’s hope of long life even if you were treated before tamoxifen, chemo and the like.
You are stuck with taking whatever treatment is on offer at your time of diagnosis. So I hope for the best, and make sure I do the things I want now rather than later.
Mole
Hi Rachy,
I too looked at the adjuvant online site after reading Jane’s post but like you bottled out when I saw the amount of detail required for registering.
Have i found the right site…ie for medics only. Didn’t know what fictious medical initials to put after my name, and balked at saying how many consultaions for chemo I,d done. any advice on how to register Jane? Would certainly be interested.
Trish
Hi Trish
I just left the initals as M.D. I think the registration is all done in cyber space…no real people waiting to pounce…saying JaneRA you are not a doctor…first time I went on I thought the doctor police would come knocking at the front door but safe so far.
Jane
Thanks Mole for explanation of the cancer statistics. I agree that cancer charities and cancer reserch orgnaisations like to present stats with the glossiest glow on them. They want to show that progress is being made against cancer so that we will all continue donating money.
Millions and millions has been spent on cancer research in recent years for what i actually think are not very wonderful improvements in prognosis…often quite small incremetal improvements.
Even if we take the figure of 70% surviving for 20 years at face value that still means that of the 44,000 or more women who will be diagnosed this year nearly 15,000 will be dead of it in 20 years. And of course these clever 20 year stats don’t tell us how many were dead by 5 years or 10 or how many more will still die. The death rates for breast cancer are steadily declining which is ‘good’ but the diagnosis rates are increasing still in UK.
My focus on the down side of stats is not about cups being half full, quarter full or empty but about simply pointing out that all kinds of cancer, breats cancer included are still killing far far more people than perhaps as a society we care to notice.
Jane
Hi Jane - I went on the Adjuvant Online and registered as a GP and my stat was that I have a 44% of being here in 10 years !!
Rachy 7 - that’s just how I felt with I asked the doctor - as if she just changed the subject. The same thing happened last year with a different registrar when I was receiving my Taxotere.
When all this kicked off last year I told the oncologist that I want everything upfront and that’s how I deal with things.
Liz xx
Hi,
On the adjuvant Online…how do you know what to put it the 10 year risk bit?
Sheana x