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Silly question maybe

13 REPLIES 13

Re: Silly question maybe

Hi Signet - the one thing that got to me in the early days was when each professional I came into contact with looked so sad , went very quiet , and said how very sorry they were! well my interpretation of that was ....... well you can imagine. For the first two / three months I was off the wall with worry . Nobody was positive or reassuring in anyway. I didn't want it treated lightly but neither did I need this ' Oh poor thing - not long left then' attitude. Oh yes I can relate to a totally ineffectual BC Nurse but I think that if they have been doing the job for sometime there is a danger of them becoming unintentionally desensitized. I see that your receiving loads of positive messages but without good professional support you must be feeling so frustrated and alone. All your energies are going into your family with little left for yourself let alone fighting a communication battle with the hospital.These stats are guestimuts based on the now please put your faith in the girls who are contacting you through this thread - their the ones that really know through experience.

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Re: Silly question maybe

Hi Signet

Statistics work when you take people in a mass but they are very poor predictor for an individual. My onc gave me the prognosis for my lung + liver secondaries - about 18 months - but also said that he and his colleagues were all graded 'poor' on prognosis because cancer is so individual.. I looked it up on the internet and it gave me about 11 months. That was 3 years ago. I am on arimidex and living a full and normal life with no noticeable side effects. I work pretty much full time and last year I cycled from the north coast of France to the Med and the week after next I am doing the London to Brighton. I didn't cycle before I had cancer! I have a new grandson and I'm enjoying getting to know him - hopefully for a few years yet.
Frankly - no-one can tell you precisely what will happen in an individual case. Of course it's scary - and even worse if you are young - but don't write yourself off. I think there's a sort of schizophrenia we all achieve - we know that we probably won't live for very many years but at the same time it's really important to get what we can from the present moment.
Sorry to go on - but I do wish you all the very best

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Re: Silly question maybe

Hi signet, just been reading your thread and I know how your feeling.

After nearly 4 years after my first diagnosis with breast cancer, I was diagnosed with secondaries in the liver, spine, hips and lung, almost a year ago (I am 43 now). I have had a few scans since then, and the lung cancer has gone, and there is a small improvement in the liver cancer. I had 18 weeks of taxol, and also have been on herceptin and zometa every three weeks and will probably be on these two for life. I have never asked how long I have and my oncologist has not volunteered that information, I think she knows that I dont want to know, lol.

I just want to say that a nearly a year on, I am feeling pretty well, all is stable, and I dont ever think of statistics - everyone is unique and even though it is most likely I wont have that many years left I have managed to blot that fact out, for most of the time anyway, lol. I think there is time enough to worry about the end when you actually know for a fact the end is near.

My advice is listen to your oncologist, and if he is happy with your progress concentrate on that, forget what the nurses predict, they really shouldn't be predicting anything I dont think.

Best wishes to you and I hope you continue to feel well.

Jackie X

Re: Silly question maybe

Hi signet

Please try and remember that those statistics are also immediately out of date - probably do not take into account the success with newer drugs like Tax.

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Re: Silly question maybe

Hi Ann it wasn't given by onc i used a calculator on cancer research forum entering my grade etc x x
so really I haven't a clue xxxx

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Re: Silly question maybe

signet - In answer to your first question, I would have thought that the prognosis given to you the first time would have taken into account all the possibilities and worked out a percentage. Otherwise, if the percentage did not include people with all outcomes, it would not be very relevant to your case - if you see what I mean.

Ann x

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Re: Silly question maybe

Ta hun xxx I justfeel the set up hereis poor and compared to the knowledge and understanding many girls show on here it's crystal clear we aren't being supported or well informed. I feel so naive in comparison xx

it's been a frustrating jumble of confusion and frustration but I intend to nip it in the bud before theydrive me insane xxx

Re: Silly question maybe

Lynn i think there is a massive difference between a general palliative nurse and a BCN... i would say its def worthwhile speaking to the WGH.... every breast patient should have a BCN and people with secondary BC should have a dedicated secondaries BCN.

it doesnt sound like the ones dealing with your case as specialised enough.

im sure your onc wouldnt be daft enough to lie to you about your prognosis so i would be more inclined to take his word over that of the nurse who is probably just generalising rather than looking at your own specific set of symptoms.

as for not working some people with secondaries do work, but it probably depends on whether you actually want to work and what kind of job you do as some very heavy jobs may take too much out of you, but some people probably enjoy the normality of going to work even if they only go part time.

you be the one to decide whether you work or not.

Lxx

Re: Silly question maybe

Hi Signet,

Do give the helpline here a ring and have a chat about your situation, I'm sure they'll be able to support you through this.

Take care,
Jo, Facilitator

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Re: Silly question maybe

She is a palliative care nurse for all cancers and covers the borders area x maybe I should tell my onc who is based at western and ask to meet with one of the nurses there you have mentioned.

You hit the nail onnthe head all of you with the fact we are all diff and hopefully I can stick around longer fir my kids. It is frustrating and confusing havin this pos onc then the treatment room nurses treating me
like the condemned one and the palliative nurse doing the same and brutally talking bout sedation
at the end etc very premature when I only heard few weeks back.

So hard to resolve this as I have tried
and the palliative nurse is treating me
like I can't cope and am in denial and the same with the others. Only
my onc seems to get it. Not sure short of sayin it to them straight to quit it???

Re: Silly question maybe

signet sorry to hear of your situation.

your not the first person i have heard who has this attitude from palliative care nurses.... i think as their role has traditionally be palliation and terminal care they sometimes think that everybody is in the same boat.

i would listen to your onc as hes the one who knows your case inside out, whereas often palliative care nurses want you to accept your prognosis but when you are getting told one thing from them and one thing from your onc its obviously very confusing.

do you have a secondaries BCN rather than palliative care nurse as maybe they would be a bit more realistic and deal with breast cancer patients and not just any cancer patients as some cancers are more life limiting than others.

i very much doubt they are HCAs calling themselves palliative care nurses as its a criminal offence to pass yourself off as a nurse if your not one and palliative nurses have years of experience but like i said that may be in more general cancer care than BC.

i know there a couple of fantastic secondaries BCNs based at the WGH although not sure where your being treated but maybe you could ask to speak to one of them.

Lxx

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Re: Silly question maybe

hi
a lady at my docors had extensive liver mets 4 years ago, she had chemo and is on herceptin, she is still showing no evidence of disease, i dont think anybody can give prognosis correctly as we are all individual and react differently, i havent had any involvement with nurses , there is so much scaremongering i prefer to always look at the current treatments they are developing which gives us all hope for a future
galen x

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Re: Silly question maybe

Your oncologist is the person who knows your cancer the best. S/he is a doctor who has gone onto specialise in cancer and will know infinitely more than a palliative nurse. Are these nurses specificially working only with breast cancer patients? If not, I wouldn't take any notice whatsover. No disrespect to nurses, but how the hell will they know more than an oncologist? Are they qualified nurses or health care assistants? Even a specialised breast cancer nurse won't have the extensive scientific knowledge and experience that an oncologist has and I would doubt if they would make generalisations about prognosis unless asked. Stop letting them wind you up. Tell your oncologist what they are saying and let him inform their line manager.

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Silly question maybe

My onc is very optimistic fir me - thank god as the nurses are writing me off - my liver mets were found early and just three small lesions.

Some of u will have read I am havingnproblems with the negative attitude from nurses who have me convinced I have little time left.

What I wondered is this - my primary dx was grade 3, and big tumour and 15 lymphs. The official stats on prognosis were poor for that so now that it's spread goes that
mean I am likely to have even less time? It said women in my group statistically lasted 5 years tops and that was only a small percentage.

Could this be why the nurses are like this with me! My onc is thenopposite but the palliative nurse is very blunt and says in general liver met survival rates are poor. But she said she wasn't basing that on
my circs just in her experience and apparently the younger you are the worse.

Ah I need to stop lettin them get me like this