more information for newly dx bc patients

more information for newly dx bc patients

more information for newly dx bc patients My sister died in may aged just 44.she was diagnosed with BC in 2000 and was never given a lot of information about her prognosis.she felt that once she had surgery and started on tamoxifen all would be well.her BC nurse didnt explain the likelihood of mets and death.i know that BC nurses have to keep the patient positive and i know scaremongering is wrong but i now know for a fact that my sister was not given enough info-had she known how likely mets and secondaries to liver etc was- she would have had chemo and radiotherapy-and i feel she would have been alive today.i am outraged that these nurses dont spend enough time educating their patients.my sister was told the basic facts and when she asked how neccessary chemo was she was told that it was just a precaution.she was breast feeding at the time and decided not to have the chemo.no one bothered to try and change her mind and i feel that if someone had bothered to spend some time with her she may be still alive now.
her death has absolutley devastated me and my family-it is the most awful thing to struggle through.i am now off sick from work with depression because i cannot cope with her death.i saw her dying in hospital in pain and it was so awful.she had developed ascites-a complication due to liver mets and she bled to death in her hospital bed.
i dont want to frighten anyone but i feel it is imperative that anyone newly diagnosed with this awful disease knows what can and often does happen.
its great that so many people are living longer and have good quality lives but it is also a fact that people do die in horrendous circumstances and in some cases this can be prevented.Breast cancer nurses Must educate people more at the early stages of the disease-it is vital

Hi Sue I’m sorry but not surprised that you’re suffering from depression, you haven’t had very long to grieve for your sister yet.

There’s no way of knowing of course whether your sister would have survived or lived longer if she’d had more treatment, but I share your anger at the lack of information given to breast cancer patients, not just by bcns but by all the medical professionals involved. Had it not been for these forums, I don’t know when or how I would have found out about secondary cancer - like the overwhelming majority who’ve responded to the survey on this site, I got almost all my information about breast cancer online.

I like to know everything that any medical professional knows about my cancer; the lack of information that is given reminds me of almost thirty years ago when my mother’s doctors decided not to tell her she had cancer. This was not all that uncommon then, and I think the cancer professionals who presumably think they’re sparing us by not giving us all the information we need are the modern-day equivalent.

I’ve often wondered about you and about your sister’s family.You may remember that I have also lost a sister, almost four years ago now. Our situations weren’t the same - my sister had a rare form of ms and although her death was devastating I had very much longer than you had to prepare myself for her eventual death.

These days I smile far more often than I cry when I think of her; I hope as time goes by - it’s still such very early days for you - you and your family will come to feel like this too and will remember all the sweet times. Forgive me if this sounds trite.

Thinking of you

Louise
xx

hoopeybird-couldn’t agree with you more.
But surely your sister’s surgeon and onc told her how important treatment was and why?
I don’t think that it is the function of the BCN to tell us these things.
She’s a hotline to breast surgeon when we get a new symptom, refer us to Lympho clinic/nurse, sort out our falsie, if needed, and allay our fears when we have a symptom, which we think may be dreadful, to be investigated by a different dept and long time waits.
It’s essential for girls to know what MAY happen next, how to look out for it, and to be aware that no one can know if they are in the lucky/unlucky groups of br ca ladies so to be very watchful.
I’m truly sorry you both had a dreadful time with such sad results and appreciate your care for other victims. Best wishes, dilly

Further Support Dear Hoopeybird

I am so sorry to hear of your sister’s death, I understand this must be a very difficult time for you and your family.

Breast Cancer Care has a free confidential helpline which you may find of support. All the helpline team have experience of dealing with these circumstances and they can talk to you about the emotional issues surrounding bereavement following breast cancer and put you in touch with further sources of help and support.

The number for the helpline is 0808 800 6000 and is open Monday to Friday 9am - 5pm, Saturdays 9am - 2pm.

I do hope you find the helpline can offer some support at this difficult time.

Kind regards.

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Breast Cancer Care