When you hear of others who have died from BC.

I just wondered how you all cope when you hear of others who have died of BC.
I went to friends tonight and they had invited folk over who i did not know. Started talking to one guy and turns out his wife died 2 and a half years ago of BC.
It did not come at a ‘good’ time for me. I feel so down and have pain under my arm and on mastectomy site. i have posted and no on has replied yet. maybe no one is unfortunate enough to experience pain in that area.

Rx

Hi Liverbird,

Did the person who you were talking to know you had bc? Ie are you still getting treatment? I’m sure that he did not intentially mean to cause you any upset. I have lived with bc in my family for a long time and was dx with secondary bc myself in June. My cousin and two aunts have died from it, and although hard to deal with at the time, it does get easier.

I think hearing that someone has died only intensifies any feelings you may be having at the time, which doesn’t help matters. I think that the best thing you can do is see your doctor or bc nurse to sort out any pain you are experiencing, once this is under control you may feel better.

Hope that you get pain relief and please feel free to message me any time

Love Kate

Hie Liverbird

I know how you feel. Ever since i have been diagnosed with BC, whenever I have had to tell people, it seems everybody seems to know someone who has had it. When I ask so how are they doing now? all I have heard is they passed away! Very reassuring right. At times it feels all the people you read about the in the magazines and you see featured in articles and publications about breast cancer are not real but models. Because I haven’t met anyone who says so and so had BC some time ago and they are doing really well! I did get a telephone number from someone whose aunty was currently going through treatment, but she scared the living daylights out of me and I never rang her back.

I know its hard to stay positive when all you hear is doom and gloom, but you have to hang on in there and BELIEVE ITS GOING TO GET BETTER!

Hi Everyone

Since I was diagnosed with BC last November I have had both experiences, and I guess that is the reality we live with. I have been told of, and met, many many people who had breast cancer “years ago” and are now absolutely fine, but also I have talked to other people who have told me of loved ones that they have lost through this disease. When I told my surgeon that my grandmother had died at 107 and said “I won’t be like her then” he said, “Well you might. Most people make it (recover), some don’t, but most do”. I’ve stopped looking at statistics now, just taking things day by day and rejoicing in all that I have in the here and now. We none of us know (whether we have breast cancer or not) what the future holds, and nor do we have that much control over some aspects of it. We can live fully and joyfully now, anyway, that’s the approach I find works for me, and wastes the least of each precious day! Good luck and love to you brave wonderful ladies. Sarah xx - Liverbird, an extra special hug for you, I always enjoy reading your posts and think of you often, sorry it is a specially difficult time at the moment. S x

Hi
I know several women who have had breast cancer and are doing well, some of them many years later. Unfortunately the one person who I knew who died from it was my Mum, who was diagnosed at virtually the same age as I was when diagnosed. Obviously this both saddens and worries me, but when I think of how well so many others have done, I find this encouraging. As Seabird says, we can’t predict the future and I am trying to make the most of the time I have whether it turns out to be long or short (as well as I can with such sore knees from the Arimidex!!)
I have also got a sharp pain under my arm, below and near to where the sample lymph glands were taken (I had a WLE). As I have just started swimming again I wondered if there might be a connection.
All the very best
Anne

Hello Liverbird,

Whenever I hear of someone who has died of breast cancer or any other cancer, I feel so terribly guilty that they have gone and I am still here.
I am aware that obviously I have more living to do; and so that is how I try to think of it. But I still feel the same.

Good luck to you
LOL
Lambkin
x

Hi Liverbird,

I too have pain under my arm, it has never really gone since my mastectomy and lymph node removal, it is also swollen some days more than other, i have been told it will take some time to go down! It does pull my jumpers a bit to one side and i think also the prothesis although a light one does not help. I also still get pain around my scar.
I have never stopped the pain killers since i left hospital with it.

I know what you mean about hearing about people dying from this disease, my best friend of 25 years lost her own dear sister to the disease 11 years ago. Poor women had a most aggressive form of the disease and only managed a year from diagnosis, she was only 42 and left a young 9 year old son. I remember 11 years ago going through every appointment and hospital visit that this poor women had via my friend and thinking how horrific it all was never in my wildest dreams thinking it would ever happen to me! My best friend is neurotic about breast cancer, has never been able to talk about it as it has always hurt too much, imagine the job i had telling her that i also had the disease, to her it was a killer disease that robbed her of her beautiful sister. On telling she totally collapsed and i had to be very strong for her. We still can’t talk about my illness very much as it is all too much for her. She has been supportive as best she can but i know she lives in terror of me resulting the same as her sister.

As for me I try to enjoy everyday and find something to laugh about, I have three holidays planned for this year and intend to be well enough to go on all of them, i had to cancel one last year soon after my operation. I don’t look to far into the future and am certainly not worried anymore about my retirement and not having a private company pension, i used to lie awake worrying about my old age and how i would manage on the state pension! That has all gone now, if necessary i will be the oldest hooker in town!!!

Best wishes to you all
Suzzanne

I feel very sad when I hear of anyone I know who has died of any kind of cancer…usually this means they have died prematurely, after a difiicult time. I also feel angry that this society has not yet cracked a cure for the disease.

I knew people who had died of breast cancer before I got it. I also knew people who were living many years after a diagnosis. This continues but since getting the disease myself and decdiing to stay among various breast cancer communities I have made more friends with breast cancer and yes inevitably and sadly some of those have died, are dying or will die. I weep for each person who dies and think how sad the particular implications of their death is for their family and friends. I also feel privileged to have known some very fine women from whom I have learned and continue to learn how to live as well as I can with cancer. I know my own breast cancer will eventually kill me (bar that old bus which might rumble along). But for me acknowledging the deaths of others and my own likely death is part of the business of living with an incurable disease. As is understanding that many others live a long time with breast cancer and probably a half to two thirds die of something else.

Ruth…I’m sorry to hear about your pain in your mastectomy scar. Please ask your BC nurse to check it out and and see a consultant if necessary.

best wishes

Jane

I mentioned that I had breast cancer to a neighbour over the road who I employed to paint the front of my house shortly after I had gone through treatment. Now whenever we stop for a chat he tells me about anyone he knows with cancer, and quite a few seem to have been terminal. I must say I now laugh at it. I’ve survived so far but anything he says or anyone else who dies won’t make any difference to my outcome methinks

Mole

I do know where you are all coming from. I also know a few people who have survived, including my mum who was dx at 59 and is now 84! But I have also lost two good friends and all my cousins to this disease. I have had a recurrence with wide spread to all lymph nodes, so my prognosis is obviously not brilliant now. But as you have all said, I do try and make the very best of what I’ve got. Yes, there are some limitations now, especially as I have slight lymphoedema on upper arm and chest wall, so need to be extra vigilant and careful, but I am still around and plan to see my grandchildren grow up! What does not help if people tell you horror stories all the time, they never seem to mention the people still around, but as Mole has said, you just have to laugh it off.

Ruth, I too have swelling under my arm and it gets painful, but that is apparently due to the lymphoedema. I get the odd ‘twinge’ in the scar r line, but nothing that requires pain killers. I do swim very regularly and have noticed that if I have been to vigorous with the backstroke I do get some muscle ache, but I do enjoy my exercise and the BC nurse has said that exercise is very important to stop lymphoedeam develeoping or getting worse and is generally good for the affected side to get all the muscles etc. working properly. But I would suggest Ruth that you have a word with your BC nurse, just to make sure everything is ok. Best wishes

Birgit

What scares me is that the people I know who have died have all had Grade 1 bc. I had Grade 3 and had a recurrence last year. If people who are Grade 1 die then what hope is there for me? That’s what goes through my head when I am feeling low. So I understand how you’re feeling, We all cope with this knowledge as best we can. Sometimes it’s unbearable, other times we can push it to the back of our minds and get on with life. I think this is the best we can hope for after being diagnosed with cancer. The fear will never fade completely but it can be manageable.

love
Sue

I have grade 1 breast cancer and I haven’t died yet. I found my lump in June 2003 and was diagnosed on 5 Dec 2003.

I think there’s a lot of luck in it. Cancer of its nature can spread whatever the grade but there are statistics on likelihood. You can be on either side of the stats, good or bad whatever they are. I had an extremely rare form of breast cancer affecting about 1% of people, so that made me think I could be on the wrong side of the stats, and I was younger than average so once again on the wrong side of the stats.

However after a year or so of contemplating my demise, I found it easier to contemplate death from breast cancer. This was when I started to think what would happen if I didn’t die of it. I will have to die of something else. I’m not sure dying of heart disease which runs in my family is preferable.

In the last six months I have been helping to care for my elderly aunt. I personally would not relish living alone smelling of urine and not able to manage my finances aged 84. I live alone and can see this happening in later years, I would prefer a good quality of life for shorter.

I have decided to do what I want now rather than wait for an uncertain future healthwise whether due to breast cancer or some other cause. I fear doctors and interventions and pain, I am not sure death is going to be so bad so I have decided I don’t want to have further treatment if my cancer does recur. But everyone is different and maybe I would think differently if I was rediagnosed.

Mole

The trouble is Mole that I’ve not heard of a death from breast cancer that was too pleasant. I always wanted to go quick in my sleep…don’t we all?

I’m back in b***** treatment again…always thought I wouldn’t…not sure why I am…like you fear interventions and pain (don’t mind the doctors so much). Unfortunately you eventually need the doctors to deal with pain…unless a quick trip to Switzerland is feasible…Good to see your posts again.

Sue…most people with grade 1 cancer don’t die. More with grade 3 do. We each dread being the wrong side of the stats whatever way they show.

very best wishes

Jane

Thanks for that Jane, I’m Grade 3!

Hi Ladies,

I think this is quite a difficult subject, I visited the thread earlier and didn’t know whether to add anything but I guess if we look at such a subject then we must be affected or is that effected my grammar stinks at times?

Anyway when I have heard someone has died I do stop and think for a while, it doesn’t fright me just sadness me, especially if they person is young.

If I am honest its when a close friend that dies of any disease it hits me harder. My life long friend, a mentor and inspiration died after a very short terminal illness.

When I am feeling a little down I just think that she had no choice but to die when dx’d with motor neuron disease- no cure no treatment. At lease I have a fighting chance, yes even with a grade 3 and NPI score of 5.2. (Not so good prognosis).

I still feel well when not under going treatment so I can remain more upbeat but I don’t knock anyone who can not have a positive outlook as me.

Good luck ladies and Happy New Year.

Carol

Just googled the NPI thing and my score was 6.66 (!) but I dunno I think it’s not very accurate as it doesn’t take into consideration her2 and hormone receptor status etc.

Take care,
Teacup xx

What’s an NPI?

It’s the Nottingham Prognostic Index but I think it is based on out-dated research so maybe forget about it I think. I might search old posts here and see has it been mentioned before.

Yeah, it’s been mentioned in a couple of old threads. Based on these threads, I don’t think it’s a accurate indicator of survival.

Hi Jez and Teacup

I had taken heart in the fact I read that it was and outdated scoring system based on a number of factors effecting the cancer such as stage and grade of the lump, age and family history. The scoring between0 and 7 I believe.In fact I wish I had never asked, I just wanted the consultants to know I has read up about BC, and wanted some ‘clever’ questions to ask.
However the Nottingham Breast Institute regarded as one of the best still use these tests and I am being treated there so I wonder if they have updated there technique. Still I am still not letting that information get me down

Bye for now

Carol