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Should I ask about prognosis

12 REPLIES 12
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Re: Should I ask about prognosis

I am inclined to feel that it all really boils down to odds of 50/50 because we will either survive this disease or die of it.

When I was first diagnosed I spent a lot of time fiddling with Adjuvant (not accurate as it does not include lower profile prognostic indicators like vascular invasion)- so I know very well what my prognosis is supposed to be. If it actually turns out that way - only time will tell.

There is no way I could carry on without knowing what my prognosis is. My way of dealing with this thing is to be as informed as possible.I don't like the idea of medics knowing more than me. So in response to your question I'd say - yes. Ask them.

But - and it is a BIG but - as others have said all the current prognostic tools use data that is out of date - data which predate widespread use of AIs as frontline adjuvant treatment for post-menopausal women; Herceptin; taxanes in adjuvant treatment; the general policy of chemo and rads as adjuvant treatment.

A friend of mine was diagnosed with HIV in the early 1980s. He was told he had less than a year to live. But then anti-retroviral drugs came along and he is still alive and kicking.
We have to just keep pushing for a cure - or at least something that will keep this thing pinned down so we get to die of something else at a very advanced age.

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Re: Should I ask about prognosis

My oncologist eventually showed me Adjuvant Online using a PDA!!! He is a very cautious man as a rule so I was a bit surprised but it was explained so quickly I couldn't take it all in.

In the end it is statistics and we will all fall on one side or the other.

For example mammograms detect 80% of abnormalities and I was in the 20% so what use mammography?

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Re: Should I ask about prognosis

Starfish, i have suffered very severe depression and actually asked if arimidex was causing it. After a bit of pursuasion I have been off of it about a month and the difference in my mood is incredible. i am so much better. i am seeing my onc on Thursdeay to discuss alternatives as my bc was very oestrogen positve. Don't suffer, get onto your bcn or oncologist as the depressive affect of some of the aromotase inhibiters is very underestimated. It was affecting my quality of life so badly I had to get something done about it. I too am wanting to know more about my prognosis as my onc would not tell me much. I have done adjuntive on line but want it from the onc. It is a very hard thing to ask for as you want to know but in other ways do not want to know !

R xxx

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Re: Should I ask about prognosis

Hi Elinda

You have some very sound advice from folks, I truly don't want to sound flipant or patronising by adding this.

I have found the best mantra for me has been, 'I am not going to live dying'.

Something simple to focus on has been a god send to me when down, it clears my thoughts.

Regards
Carol

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Re: Should I ask about prognosis

Hi Elinda

I'm one of those people who wants to know the very worse it can be and then work my way up from there. OK I have an advantage in that im a nurse and know the lingo, what Q to ask etc.

My cancer was like your and thrived on HRT I also had node involvement, tomorrow I find out what type etc of chemo and then radiotherapy I'm getting, also what I may get after.

Both surgion and oncologist are sure I have an excellent prognosis and my BCNurse thinks I have a life expectancy to about 85 (57 gong on 7 at the mo).

OK nothing in medicine is certain but I do know that things keep improving at a very fast rate. An example of this is prior to surgery I went on a drug trial to see if they could shrink my tumor (drug only been used for about 5 yers in cases of widespread nasties) in some cases it works well so theire trying to see how/why/who it will work for so trialing in the newly diagnosed and it worked well on me - tumor shrunk by almost 2/3.

So even at this moment a poor prognosis may not be that bad, but life has no garanties and were all special.

gx

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Re: Should I ask about prognosis

I think looking through all your replies and thank you so much for these everyone that I probably don't want to know. I think that Dawn you hit the nail on the head when you asked about how to go about picking yourself up if you're told the prognosis isn't good. By the way your message was very encouraging!

Also as someone else pointed out you don't know which side of the line you'll be with statistics and it might just start increasing anxiety and worry. You could be told it's poor and then live to a ripe old age worrying all the time. I suppose living with uncertainty is one of the hardest things of this illness.

My husband isn't keen to know and nor is my mum. I suppose I have to think what would change if I knew and the only thing I can think of is that I could get really depressed and worry (that is more than now!).

Starfish I wonder if you're feeling worse as you're getting near the end of the herceptin treatment? I seem to sink very low after each stage of treatment. Don't know what Armidex is but if it relates to hormones then this could also probably be a factor.

Elinda x

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Re: Should I ask about prognosis

I am also thinking of asking for prognosis now I am nearing the end of Herceptin. No one has ever given me prognosis but they have all been very depressing. I was Grade 2, lobular 6/21 lymph nodes and HER2. I have been told I am only slightly hormonal but they put me on Armidex anyway. I have become increasingly depressed over the last few weeks. Really feel in a black hole. I read stories where people say it gave them a new lease of life! Am I different. I feel emotionally and physically exhausted, mutilated, hate my body and very very fearful for the future.

I am sorry to be so down. GP prescribed sleeping tablets. Have had trouble sleeping ever since I started Arimidex in January this year. I wonder if the sleeping tablets are making me depressed. I have been suffering with laryngitis for the past week (good) some would say. I really cannot see beyond it all. I would like to feel hopeful but the health professionals never seem to have been about me.

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Re: Should I ask about prognosis

Hello all

Adjuvant online isn't totally reliable and it certainly does NOT and cannot take account of BRCA1/2 status.

It is important to remember that prognosis can change and even if you start out with an adverse one, the longer you keep going the more improved your prognosis can become - to a point. I think the curve eventually flattens a bit but not necessarily at zero just a lower likelihood of death, or higher likelihood of surviving, depending on how you look at it.

D

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Re: Should I ask about prognosis

I have also been agonising about this since my wife was diagnosed in mid-June. I want to know everything, though, even if the news turns out to be not good.

The one thing I realized, though, is that 10 year prognosis figures are, by definition, for people who were diagnosed at least 10 years ago - probably more. I think a lot has changed in that time, so I hope the figures are giving a much blacker picture than the reality.

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Re: Should I ask about prognosis

I think some doctors are very happy to discuss percentages, others do not. I don't think it's to do with an individual's prognosis. Watch out where the statistics come from - the cancer research uk site gives me a 30-50% chance of surviving 10 years, the Nottingham Prognostic Index (NPI) says 60%, but adjuvant online says 80%. I have chosen to believe adjuvant online! That's not just me trying to look on the bright side - I think it is the most up to date one, as it takes into account the latest chemo regimes, but even this one does not take into account herceptin.

However, as Cherub says, statistics only apply to large groups. As an individual you can either survive or not, and no-one knows what side of the dividing line any of us will fall, wherever that dividing line might be.

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Re: Should I ask about prognosis

Elinda you really sound as if you have had so many health problems and I can understand your fear that cos the onc said nothing it could imply the worst. As cherub says statistics are just that - none of us is 'average' and also cancer is very unpredictable. Also by the time we get to read these stats they are out of date. I think it is very hard if you ask what your chances are and are told very poor, to lift yourself out of that by telling yourself statistics are not always right! I was dx at your age 45 and had I asked my odds then they would have been very poor, but now 19 years on I am still here even though I have had a few ups & downs with it. I am glad I never asked THAT question.

Dawn
xx

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Re: Should I ask about prognosis

I think it is very much an individual choice and in my own case I asked when I had finished Taxotere and was part way through Herceptin. I asked primarily because I needed the oncologist to explain what they generally mean by remission.

It's also important to remember that statistics are just that and the unpredictable nature of this does not mean the stats are right. I've known people who have had a re-emergence despite having a good prognosis and also had an aunt with a poor prognosis who lived around 35 years post treatment and died from old age. My breast care nurse told me her mum had had BC twice with 14 years between, but she is has been OK again for the last 5 years.

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Should I ask about prognosis

Hi there

I've been reading a couple of threads recently where people have been told they've got x% chance of cancer returning or told they may get cured etc.

No-one has said anything to me so I'm thinking the worse. I did have a very large tumour (about 6cm) - the growth seems to have suddenly accelerated with a few weeks of HRT, it was invasive lobular and 9/17 lymph nodes. I have recently turned 45 years. I have one lot of chemo which shrunk the tumour considerably, bilateral mastectomy and about start more chemo followed by radiotherapy. The chemo I've had was almost unbearable as I had so many side effects the worst of which was terrible sickness.

Do I really want to know if they say I'm not likely to live another 10 years? But what if there is some hope?

I'm feeling increasingly frightened by all of this. I had years of ill health prior to this which was finally resolved with surgery in 2007 and then wham this comes along. There's so much I still want to do that I haven't been able to do because of all the ill health I've had.

Have others asked or just been told?
Elinda x