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City Hospital This Morning

24 REPLIES 24
tigerlily
Member

Re: City Hospital This Morning

Birgit. So sorry to hear of your recurrence. Hoping you are soon on the road to \'putting it behind you\' again - best wishes

Birgit
Member

Re: City Hospital This Morning

Living with BC Tigerlily

You\'ve taken the words out of my mouth, thank you.

From a personal view, I have sadly had a recurrence after 6 years. Up to that point I had (just as Debbi says), put it more or less behind me. Yes, I did have a reconstructed boob, that never looked perfect, but I could wear normal bras and swimwear and did not have any significant discomfort. Enjoyed work and life in general and actually re-married. However , now that I had a recurrence of this horrible disease, my views have changed dramatically. Apart from the fact t that I had to have a radical mastectomy and lost the implant, I have developed lymphoedema and am taking Arimidex, with a lot of horrible side effects. I also had large lymph node involvement at level 3, so my prognosis is much poorer now. I am still trying to come to terms with all this and this site, as you said, is a real help and comfort. I have learned a lot more than I could have done by just reading booklets etc., and it is great to find that others often feel just like you do. It somehow makes you feel les alone, and also less worried, as the mind can go into \'overdrive\', especially at 4am in the morning.

So good luck to everyone who has put it behind them, and I hope to join that happy crowd before too long. But in the meantime, I will keep posting and reading the helpful advice and give support if I can.

tigerlily
Member

Re: City Hospital This Morning

Debbi. I do also find many negatives on the sites but I think thats only to be expected. Those that have recurrence or secondaries, or are very concerned with recurrence and getting back to their lives, are the very ones that will naturally come on here for support on a regular basis - apart from those going through treatment of course.
Keep in mind that there are many thousands of women who each year finish treatment and just get on with it, and who no longer (or never) come online as they are busy living the rest of their lives. This is not to say that people who come on here don\'t live lively, happy lives, just that one comes on here when we want to give and receive support and share experiences, but many don\'t.

belinda
Member

Re: City Hospital This Morning

I have secondaries although I\'ve been in remission since the Summer of 2005. I haven\'t given up hope of living with breast cancer for a long while yet. I was diagnosed in 2003 with both bc and bone mets and have never had need of pain killers. The cancer is being kept in remission with Arimidex. Life is pretty normal (ish). I know many women with secondaries, I meet up with them several times a year. None of them are curled up waiting to die, they\'re just busy getting on with life.
Debbi I have a genetic appointment soon, I have a daughter too. I can cope with my own diagnosis but have found the genetic appointment and it\'s implications so stressful. Good Luck, I hope you get good news from the genetics appointment.

debbi
Member

Re: City Hospital This Morning

sorry to stir any bad feeling i am under no illusion that I might get cancer again as it is now turning out that it runs in my family, mum and aunty had dcis and my mums mums sister died of breast cancer 20 years ago and 6 years ago my grandad had prostate cancer, my mums dad, all this ,apart from my mum I found out on friday,I have already been to genetics clinic to see if I carry the gene.But I told my breast cancer nurse what has been said on here and soon I am going in for a mastectomy on the right hand side even though I do not have anything on this side,I had an ultrasound and a mammogram last week,she said this will reduce my risk by 90 percent and she said that on the side where I have already had a mastectomy It is a very small risk that there is any cancer left and I know someone said that it spreads through your blood as well as your lymph nodes but isnt that why I have been a pin cushion since diagnosis in june and all has come back clear.I know it may come back and I also know that if I do carry the gene I may have passed it in to my 3 children which really p***es me off, and this damn thing has made me think about what will happen if the worst does happen but all I get from any proffesional I ask is very positive and I am hanging on to that just now because there is so much they can do now so people can lead a long and healthy life and when I read some of your posts it made me a bit sad because I came on this website for support and I have had that in some ways but all I am trying to do is think positive and found it very hard after reading these posts so I dread to think what it would do to someone who was not so positive.

JaneRA
Member

Re: City Hospital This Morning

Just wanted to say.. that I\'ve not condemned myself to anything nor am I sitting around waiting to get cancer back. Thinking about cancer knowing I may/will probably get a recurrence doesn\'t stop me \'moving on\'..

In a really good book called After Breast Cancer by Musa Meyer she describes two broad categories of response to having cancer Some people are \'minimisers\' and some are \'vigilant focusers.\' There\'s no moral righteousness attached to being one or the other..though as a vigilant focuser I sometimes think the minimisers get uncomfortable when we just state the facts.

We all deal with living with cancer in different ways, and if thinking you\'re cured is for you then go for it...but its not my way.

By the way we vigilant focusers are not a gloomy lot..we are as funny, feisty, bolshie and sunny as anyone else. Living with cancer is simply that..part of life.

best wishes to all

Jane

KathyF
Member

Re: City Hospital This Morning

I can see both sides Nearly 8 years ago, when I was first diagnosed, it was with a small Grade 1, Stage 1 tumour (node-negative). My bcn said that if I had to have bc, this was the kind to have and I was given a really excellent prognosis. I had to come off tamoxifen after 2 years because of a vision problem, but was considered such a low risk that I wasn\'t put on anything else. I rarely if ever thought about bc and if I did, it was very much as something I had had in the past.

So it was a big shock to be diagnosed last year with a recurrence under the ANC scar (this time Grade 2 with intralymphatic and perineural invasion). I certainly no longer feel that I have been cured and am aware that recurrence increases the possibility of someday developing mets.

Jane is right in saying that bc can recur at any time, though the chances of recurrence do go down over time. Statistically, those with hormone-negative tumours are more likely to recur in the first five years, whereas hormone-positive tumours (usually being slower-growing) are more likely to recur more than five years after first diagnosis. The plain fact is that bc is a sneaky disease and my breast surgeon told me that because of this she can never tell her patients that they are completely cured.

Kathy

tigerlily
Member

Re: City Hospital This Morning

I am a bit with debbi on this, in that I consider myself \'cured\'. Allthough i do realise that many find it hard to move on with their lives and leave BC behind. I am aware that I have a slightly greater chance in the future of having a recurrence than someone who hasn\'t had BC at all, but there is no guarantee of that. So I\'m not going to sit and \'wait\' for something that may never happen. Hence I have got back to my life again and all thoughts of BC - save for the scar reminder and a bit of physio ongoing - will be put to one side as something that happened to me the the past.

karen
Member

Re: City Hospital This Morning

With respect.. ..Debbi..i don\'t think anyones condemned themselves to death from breast cancer....i think we are all just being realistic about things,
that doesn\'t mean we are all going round full of doom and gloom...we are just aware of what could be.
i personally would never say i was cured for various reasons, my aunt was dx with secondaries last year after being clear for 15 yrs, and also i do not have the confidence to say or think i\'m cured or ever will be.
you obviously have a very strong mind as far as your cancer is concerned.....and that is very admirable.

karen

debbi
Member

Re: City Hospital This Morning

i will give up now then oh well we all might as well curl up now eh? its like you have all condemned yourself to death from breast cancer like i said as far as i am concerned I had breast cancer ... now I dont...I am not going to live the rest of my life thinking oh my god its going to get me anyway and thats that .. debbi ..

tigerlily
Member

Re: City Hospital This Morning

\"I was telling someone last week how I\'m only one symptom away from a return visit to hospital and mets, and they pointed out that we are ALL one symptom away from a serious illness,\"

Very true tefhayes. In the case of male protate canacer, they say that the MAJORITY of all males will die WITH it, but not FROM it. Most men over 60 will have protate cancer cells.

tefhayes
Member

Re: City Hospital This Morning

Hi all

The way I see it, you\'re cured when you die of something else that isn\'t breast cancer!

Stage 1 and 2 breast cancer are still considered \'curable\' by many doctors, especially if there is no evidence for spread to the lymph nodes. You get discharged by your oncologist after 10 years of check-ups, I was told by mine. And after 5 years, the hazard ratio (risk) of mets for early node-negative hormone negative bc falls to half of what it was originally. I think that\'s because if you have an aggressive fast-growing tumour, it might either spread quickly or not at all. A slower growing cell may take longer to cause symptoms.

It\'s not all that common for Stage1-2 patients to have recurrences and mets (although it DOES happen of course), and sometimes I feel we early-stagers spend too long agonising about the \'what if\' when we have just fought so hard to just be out there living it up again.

I was telling someone last week how I\'m only one symptom away from a return visit to hospital and mets, and they pointed out that we are ALL one symptom away from a serious illness, it\'s not only cancer survivors who worry about these things. At least we tend to know what to look for!

T xx

Lolag
Member

Re: City Hospital This Morning

NED I just wanted to back up what Jane said about \'micromets\' causing the cancer to return in the future. This can and does happen, altough it is not common. I know of two women (from an American site I post on) who went from stage I to stage IV (secondary or metastatic disease) with no lymph node involvement and nothing in between. There is even one who went from just DCIS to occular metsbone mets. She didn\'t even have actual breast cancer, just pre-cancerous cells. That\'s why they recommend chemo and sometimes rads on younger women: to try to catch these rogue micromets. Hence the terms NED and NAD. They can\'t say \'cured\' in case you sue their butts off it returns.

I always understood the term \'remission\' to mean symptoms rather than a disease or illness. For example, people with MS can be symptom-free for years but still have MS. During this period they are considered to be in remission because it is a degenerative disease and symtoms will return at some point.

I don\'t want to be in remission; I want to be cured. But if they can\'t cure me I\'ll take NED as that\'s the best they can offer.

Lola

Molennium
Member

Re: City Hospital This Morning

mastectomy mastectomy does not remove every bit of breast tissue therefore there is always a possibility that some cancerous cells will remain. So the idea that mastectomy will cure in all instances is untrue. Lymph node involvement is used as a marker for likelihood of spread. Cancer actually spreads through the blood system as well, and breast cancers are able to create their own network of blood vessels which is how they grow. Apparently tests of bone marrow seem to indicate that virtually all breast cancer reaches there. Whether it then goes on to develop into separate cancers around the body is not understood, although it has been suggested that the immune system often kills cancer cells that reach it and that cancerous cells don\'t get a very easy ride. Why they can remain dormant for up to 40 years or more is a mystery as well.

I don\'t believe I\'ve been cured, I was under 50 when diagnosed and there are many years ahead in which it could recur. Even though I have been told I have low grade cancer.

Mole

JaneRA
Member

Re: City Hospital This Morning

NAD NED and why not all clear Thanks for the link softusa. I like the idea of being NAD and NED.

Debbi: the reason that one can never really say \'all clear\' for breast cancer is that microscopic cells could have spread to other parts of the body at the time of the initial cancer. These \'micro mets\' may remainn dormant and hidden for years but then develop into cancer (metastic or secondary spread) many years later.

If lymph nodes have no cancer than this is an indication that the cancer is less likely to have gone to other parts of the body but is not a certainty at all. According to the US cancer writer Susan Love about one third of people with no lymph node involvement subsequently get secondary recurrence. (And one thrid with lymoh involvement don\'t.) Breast cancer does not jump progressively from breast to lymph nodes to other organs. It can \'by pass\' the lymph nodes.

A prophylactic mastectomy will prevent another primary in the other breast but will not stop secondary spread from the original site.

I hope I\'ve got this broadly right and it explains why \'all clear\' is inaccurate.

Jane

debbi
Member

Re: City Hospital This Morning

I dont understand I dont understand why everyone keeps saying you never have the all clear from bc as far as I am concerned my bc has gone as a result of having a mastectomy so I am clear if its not there and its not spread through lymph nodes(I had 14 of these removed) how can I not be clear?I am under no illusion that it might not come back which is why I am having a prophalytic mastectomy on the other side so it definitely cant get me again.I used to have cancer.. now I dont..

softusa
Member

Re: City Hospital This Morning

Apols! We\'re both right!

NED - No Evidence of Disease or No Evidence of Disorder
NAD - No Active Disease or No Abnormality Detected

Useful site for anyone who is baffled by the terms being used:
http://www.patient.co.uk/showdoc/23/

JaneRA
Member

Re: City Hospital This Morning

NED and NAD I did mean NED..NAD\'s a new one on me...NED No Evidence of Disease is widely used by medics. Maybe NAD is too!

Jane

softusa
Member

Re: City Hospital This Morning

Kylie Again! This evening on the evening news there was an item on Kylie\'s \"come back tour\" in Australia. Yet again it was stated that Kylie had been given the \"all clear\". How wonderful, but how totally inaccurate, and what a lost opportunity to be both accurate and factual. Now no doubt, hundreds of women who have watched that news item will be wondering why, when Kylie was so recently diagnosed and treated, have they not been given the \"all clear\"!.

PS - Jane, NAD - No Abnormality Detected is what I think you probably meant.

JaneRA
Member

Re: City Hospital This Morning

never \'clear\' with breast cancer Breast cancer is very unpredictable and people can get recurrences 5/10/20 or more years after initial diagnosis. With many other cancers more people die quickly but if you do get to 5 years doctors will cautiously say you are \'clear\' or \'cured\' but this is not the case with breast cancer (though statistical likelihood of recurrence changes and generally diminishes over time.)

Lynn..your surgeon may have said you would be \'cured\' but s/he shoudn\'t have done..sometimes doctors are not very good at communicating reality to patients. No one can tell for sure whether breast cancer cells have spread to other parts of yuor body. It sounds as though your onc has a more honest approach.

No one who has had breast cancer can ever really be \'clear\'. I use the term NED (no evidence of disesae..for now) or being in remission. Some people though like to use the word clear because it helps them feel better and if thats the case then go for it..words affect perceptions but not what actually happens to any of us.

Jane

llynnt
Member

Re: City Hospital This Morning

Hi Girls

I have seen quite a few girls post about prognosis on various threads, I have to admit to being totally confused.

In fact I even spoke to my hubby aboiut this last night, as I thought that maybe I misheard what was said to me at my dx (it was a few months back, so you know chemo brain and all that!!). But anyway I was dx with Grade 3, stage 2 IDC - having chemo first to shrink tumour. At this consultation my hubby and I are sure that my surgeon turned round and said that I would \'be cured\' !

Now as a nurse I am not convinced this is right? I guess at the time I was not really taking it all in, but my hubby is adamant he came away thinking that would be it and I would be ok for the future.

I am quite cross about this and I guess when I finally get my op I will quiz the surgeon about what he said, I have to admit I have not heard my Onc talk about it in this way!

Lynn x

dilly
Member

Re: City Hospital This Morning

Biggypop46 the right words are it looks as if/ it should be All Clear.
There are no hard and fast rules just statistical likelihoods. So pay attention to how you are, take care of yourself and remember that if there\'s anything new the breast cancer nurse is your very best friend!.
Read your profile- the pouches, known as dog ears in the trade, can be tidied up if you ask for it to be done. Best wishes, dilly

Birgit
Member

Re: City Hospital This Morning

All clear? Hi there

I think it depends very much on what type of cancer you\'ve had, how far it had progressed etc. My understanding is that if it was very small, no involvement in lymphs and you have had all the treatment (rads etc.) and no further recurrences, most oncologists would give the \'all clear\' after 6 years.

I\'ve had a local recurrence and a spread to level 3 lymphs, therefore my prognosis was a lot poorer. I\'ve been told that I am in remission and taking Arimidex. I am having regular check-ups from here on - either until something else happens or I finally leave this life!!??

Don\'t know if this helps at all, and other girls might have diffferent information.

Hugs

Birgit

Biggypop46
Member

Re: City Hospital This Morning

City Hospital This Morning Today the actress who plays Pauline in Eastenders
was talking to a breast cancer patient. This woman appeared to be at the start of the illness.

Pauline ( Wendy ) has had it herself so I was surprised to hear her say to the woman about getting the all clear.

I really believed that you could only be in remission and not have an all clear. Certainly thats the way my oncologist inferred it to be.
But I have heard and read of lots of people who have had BC saying this, can you get an all clear and if so how??

Biggypop46
Member

City Hospital This Morning

City Hospital This Morning