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Does anyone want to discuss anything?

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Re: Does anyone want to discuss anything?

I am having difficulty using this new website..... Hi Jane,

Like some other ladies I am finding this new website very difficult to use but hopefully, after weeks of trying to get to this stage I have found a way thru\'!!!!!

I would like to ask if anyone is experiencing stomach problems caused by Arimidex. I started taking Tamoxifen in October 2002 after undergoing a lumpectomy, mastectomy, 6 months chemo. and 20 sessions of radiotherapy for stage 2 breast cancer. I experienced horrendous flushes and night sweats while on the Tamoxifen but otherwise, felt well however, my oncologist took me off Tamoxifen and swopped me to Arimidex just over two months ago - great I thought. How wrong can you be? I have been in agony with heartburn and indigestion, have felt really down and depressed (not usually like me) and burst into tears if anyone so much as looks at me.

Can anyone let me know if they are experiencing anything like this or is it just me. Should I come off the Arimidex and go back onto Tamoxifen or, should I stick it out and see if things will eventually improve as I now feel Tamoxifen would not give me the protection I need to stop this dreaded disease returning.

I would value anyones advice.

Thank-you.

jocjoc

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Re: Does anyone want to discuss anything?

A different angle My daughter, never particularly hormonal, was 18 and about to start her first term at uni when I was diagnosed. She was great in a practical sense - she came with me to the bone scan and liver ultrasound that I was dreading and took me shopping in town while the radioactive dye was doing its stuff.
However, I was very concerned about her because she wouldn\'t talk about the diagnosis even to her 20 year old brother, and wouldn\'t tell her friends from school, her tutor at uni or any of her new friends and I thought she was in denial, which might cause problems somewhere along the line.
A few months on I sat her down and asked her if she was OK, whether I was giving her too little or too much info in my weekly e-mails and why she didn\'t want anyone to know. Much to my surprise, she said she hadn\'t told anyone because she didn\'t feel she could cope with \'loads of mushy sympathy\'. However her best friends from school found out because I told one\'s mother (who must have regretted saying \'How are you?\' that day!) and they didn\'t react in that way - they were more curious about the treatment than anything else. Encouraged by that, she confided in a new friend at uni who had just lost his father to leukaemia.
So I would say that teenagers are scared by a cancer diagnosis, because unlike much younger children they are aware of the potential outcome, and they are also very unsure about the reaction of their contemporaries to the news, which can make them very defensive.

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Re: Does anyone want to discuss anything?

Thanks to everyone!! A big thankyou to everyone who replied to my post, its nice to know I\'m not alone with my hormonal child. I made an appointment with her form teacher on Friday, and they have a few places they use for support for the kids, one being our Hospice. I had been at the hospice on thursday to the headstart day...............(you learn to tie scarves and do makeup and really have a nice day) Anyway, one of the things I found out was that they have respite rooms where you can go for a day or a few days when things get too much. I was always under the assumption that the Hospice was the last place to be......kind of gods waiting room if you like, but seems I was totally wrong. and HC can go for the day too.theres all sorts of support there so we will give it a go over the xmas holidays. She did surprise me today though............her and her stepdad were playfighting and I told them to keep the noise down cos I had a headache.....she did as she was told, in her words \"cos my mum is ill\".I nearly fell off the chair cos she has never thought of cancer as being ill. Mind you her new nickname for me is Kiwi.cos my head feels like a kiwi fruit!! I suppose that does sound better than Baldie!!.LOL anyway I\'ve rambled on enough now so everyone have as good a chrismas as you possibly can and keep posting!!

Love Morag XXX

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Re: Does anyone want to discuss anything?

Teenagers!!!! Hi Morag,

Teenagers - well I have 3 children. My son is now at University and is fine, although at the time of my diagnosis - although we played it down - he was doing his GCSE\'s - he told me later that he walked out of his Psychology exam within minutes of reading the paper, because he couldn\'t concentrate. My daughters however have had very different responses. My eldest - now 16 - pretty much ignored me at the time - or perhaps I should say didn\'t really go out of her way to understand, particularly when I fell asleep in the middle of one of her relentlessly boring conversations about either boys or horses! Unforgiveable.! She is fine now with occasional blips. However my youngest daughter now aged 14 is proving a very \'interesting\' challenge. We are not really a household too familiar with conflict so it is difficult to deal with her \'rage\' without feeling a great sense that her presence is often difficult to deal with

Having said that she had taken away from her a certainty - her belief that her mother was immortal - not only that, but at the time of her life when she should be getting most attention she has been eclipsed by my illness. Teenagers are by definition self centred - we all were then, and certainly my daughter is very angry and really does not know why. some of that is hormonal, some of that is doubtless because she has been forced to confront a reality that no child should have to....the illness, particularly with the C word, of their parent. What I try to do every day, sometimes through the most tightly gritted teeth is get alongside her, stay calm, and give her opportunities to discuss things about her, whilst at the same time maintaining clear boundaries. Mostly I succeed, sometimes most definately not. We\'ve talked about the cancer she doesn\'t need to know anymore. In order for you to support her Morag, you are going to need lots of support yourself - don\'t look to her for that - she needs her childhood. Have you got other support? I\'m told when they come out the other end they bear an uncanny resemblance to a human being!

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Re: Does anyone want to discuss anything?

Teenagers I just read what you were saying about teenagers. Unfortnuatly I was a teenager over 11 years ago when my mum was going through Breast Cancer, I was 16 when she was first diagnosed and have to say I now live with the guilt of feeling I never ever did enough to help or felt very selfish.
I was living in absolute denial and also said things along the lines of \'well its been cut out now so you should be better\' etc. I have to say that that reaction is purly a coping mechanism and its because I was absolutly petrified of the worst happening that it was easier to live in denial. I didnt cope very well and hung out with the wrong crowd, sometimes didnt come home at night and when she came into my room sometimes during the night I would pretend I was asleep, how terribly awful and I still have nightmares about how little I did. It was just me and her living together at the time.

At the hospital I remember seeing my mum being sick and had to walk out the room, I now feel terrible about all this. All I can say about teenagers is that as far as they are concerned their mum is the strong one who looks after them, seeing them vulnrable is awful and some people cant cope. I would not take it personally as its because they care and love you so very much they cant cope with you not being well and would prefer to ignore it, however when my mum physically asked for help I would try always to do it, like shopping or cleaning or help washing her hair but I probably wouldnt volunteer this help, so if I were you just try to be blunt in the help your asking for as she probably doesnt know what to do with herself.

Sorry for ranting on, now I\'m on the other side and I have BC with secondaries so now Know what she was going through, I feel this is payback for not helping her all those years ago which is a terrible thing to live with. Go easy on the teenagers and rely more on those that can really help.
LaraC

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Re: Does anyone want to discuss anything?

Hi bjj Like you I think that your daughter is scared and shutting out all the implications of what you\'ve been going through. It could be that she feels somehow threatened by it being specifically breast cancer that you\'ve been treated for. Teenagers are immensely image conscious nowadays and there is an unhealthy emphasis on having perfect breasts, witness the 16 year olds wanting breast enhancement because their still-maturing figure doesn\'t match up to the media ideal! Anything that interferes with or threatens that self-image isn\'t welcome.

Your daughter may also just be embarrassed by the whole thing and want to put it behind her as soon as possible. Remember how easily teenagers are embarrassed by what their parents say and do and by how they look and dress. She may even suspect or know from somewhere that your having breast cancer at a young age may increase her chances of developing it too.

For the average early to mid-teenager, what happens to others only matters insofar as it impinges on their personal comfort-zone. Your son has moved beyond that age and can put others first when necessary. He may also not feel personally threatened by your illness, because like most people he doesn\'t think breast cancer affects men.

Sadly none of this makes your daughter any easier to live with. Would she listen to her brother if he tried to explain things or would that only make matters worse?

It\'s a long time since my children were teenagers and the world they live in has moved on. Hope some of this helps.

Kathy

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Re: Does anyone want to discuss anything?

Morag and bjj My heart goes out to you both.
I know they say teenagers are selfish but really..........

In a few years time they are going to look back and feel horrified by how they behaved. In the meantime it must be absolute hell for you.

At least you have this forum where people will listen and support you, sadly it\'s not much help in the real world.

love
Anne

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Re: Does anyone want to discuss anything?

Morag Hi Morag

I was diagnosed in January and have a very hormonal 16 year old daughter. She hasn\'t coped with my diagnosis at all well. When she visited me in hospital she refused to look at me. To say that she has been unhelpful this year is putting it mildly. In fact I think she has gone out of her way to do less than normal! A week or so after my op when I said I was tired she said snappily \"Well you haven\'t got cancer anymore,it\'s been cut out\". She has shown absolute no care or concern towards me at all - even when I was completely exhausted from radiotherapy she went to friends and wouldn\'t come home early and I ended up picking her up at midnight. I almost gave up having radiotherapy because she made it virtually impossible for me to go. I have no solution for you at all because I haven\'t found one! I think by treating me in this way my daughter is basically pretending the whole thing isn\'t happening - in reality, I think she is scared. She doesn\'t want to talk to anyone (counsellor etc) so we\'re struggling alone. My son (18) on the other hand has been brilliant - supportive, concerned but without getting worked up about it.

If anyone else has any suggestions I think both Morag and I would love to hear them!

bjj

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Re: Does anyone want to discuss anything?

MoragH Hi MoragH

Sorry to hear of the problems you are having with your daughter. Just echoing what jpoet has said, a post to the living with breast cancer forum, or family,partners and friends may be of assistance to you. THis isn\'t a problem I\'ve had with my children so I don\'t have any been ther done that tips, however I am aware of one website - riprap.org.uk which is i believe run by the university of sheffield to support 12-16year olds whose parents have a diagnosis of cancer.

Good luck

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Re: Does anyone want to discuss anything?

MoragH Hello MoragH

I just wanted to suggest, politely, that you might like to re-post your message on the \"Living with Breast Cancer\" forum. I can\'t make any suggestions about how to cope with your HC, as I have never had one (only been one) - other than perhaps to tell her outright that whatever she would like to think you are undergoing severe treatment whnich means you are actually ill, that you need help and support and that she is old enough to be considerate! Perhaps her school could put you in touch with some support services locally, which should be available through the County Council which would provide a friendly ear for her. Alternatively perhaps you have a friend/relation/neighbour whom she respects and feels at ease with who can help her to come to terms with the unwelcome changed situation at home.

Good luck.

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Can I ask?? this question has no real baring on the other topics on here..............but is causing me some grief...I have an 11 year old hormonal child who seems to rule my house at the minute. I have tried to keep her informed as much as possible about my BC......without scaring her too much but now she thinks that the tumors have been cut out so I should be \"normal\".......whatever normal is these days. I dont feel or look normal or rather what society perceives as normal, had to have my head shaved today cos of hair loss..........that stole HC\'s thunder cos it was supposed to be her haircut day, but Gemma my wonderful hairdresser told me I had 6 bald patches so get it off!!!.........I really think she needs to talk to someone, but cant find a support group nearer than london.......40 miles away..........has anyone got any ideas.before I end up in Holloway for murder.LOL

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Re: Does anyone want to discuss anything?

Grrr... I\'d just written a rapid response to this but when I pressed preview I got an error message and my post disappeared!

What I was saying before I was interrrupted, is that I\'d welcome separate threads for 2 reasons. The first is that on the new site, once threads go on to more than one page, they become very unwieldy to read from the beginning, especially when the posts themselves are long, as many of these have been. Separate threads would be more maneageable and more likely to attract further comment.

The second reason is that at the momet my brain can\'t seem to cope with more than one idea at a time, which puts me off trying to contribute. I\'d love to get involved with the separate threads you suggest, plus one on Arimidex in primary treatment - a definite hot topic with the publication of the recent research results as to its effectiveness in preventing recurrence.

Thanks
Kathy

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Re: Does anyone want to discuss anything?

Great but Great to see lots of views on the topics I suggested. Now we seem to have one growing thread on loads of very different things, each worthy of its own thread: not sure how we can deal with this..but keep them coming!

I might just start separate threads on:

Gloria Hunniford\'s book

Was Patricai Hewiitt right?

Euthanasia

Taxotere and primary bc

Jane

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Re: Does anyone want to discuss anything?

Taxanes and Herceptin Sticking my oar in on these...

Why don\'t more people get taxanes (esp when there is evidence to support them being agent of choice in HER 2+) - NICE guidance (or lack of it until 2007) is a good starting point. Money and NHS funding also.....

The review of Herceptin planned for next summer does worry me in that I don\'t think simply a review of Herceptin as a single agent in early BC is actually what the NHS actually needs.

The developments for HER2+ BC over the last year have been stunning - the fight that many of us have had to put up (and in some cases are still having to do ) to get access to the herceptin is something we could all do without, so yes we need clear guidelines (AND some funding ) to ensure there is no postcode lottery in this issue. But what happens for the future?? - How does the NHS want to spend its money to ensure the most cost effective treatment?? What about the studies presented at the recent SABCS (details posted by Christine MH on the Undergoing treatment ....... forum so I will not repeat) - where patients got 3 doses only of herceptin alongside a taxane based chemo. These 3 doses produced similarly impressive reducction in recurrence rates to the studies presented at ASCO in May. Heart problems (a big concern from the longer treatments) didn\'t seem to be an issue. Bit of basic maths but the way I see it - 3 doses of Herceptin with the right sort of chemo vs 18 doses of herceptin after chemo in general is going to be considerably cheaper in drug costs for the herceptin based chemo, monitoring not required etc. so for the same amount of money we\'d treat more people.

No big fanfares or press releases to announce this data to the world though. Surely it needs some urgent and detailed consideration. It will be interesting to see how the Oncs handle the issue ove rthe next weeks. I\'ve emailed NICE (they ask for \"suggestions\" for appraisal topics on their website) to say I think the review for herceptin can\'t be carried out alone, the issue of concurrent taxanes must also be dealt with. Whatever is done - can\'t come soon enough..

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Re: Does anyone want to discuss anything?

Hi Jane Hi Jane,

I\'d like to address your Herceptin question. I don\'t think she did do the right thing - she has now set a precedent whereby the Secretary of State can run roughshod over all the drug licensing/testing procedures that we have in place. Procedures set up to ensure patient safety. This has much wider implications than one drug for one condition.

Roche have not even applied for a license yet for the use of Herceptin in early stage breast cancer. I would think that as it has great results for advanced cancer that it will probably perform well for early stage as well. I think the one study that has been done does indicate this. Time will tell.

Of course this is easy for me to say as I\'m Her2- with locally advanced disease. If I was positive and early stage then I might be asking for it too. Personally for me it would quite a difficult decision to make - as I understand it Herceptin can have serious cardiac side effects, so it would be a question of balancing 2 risks.

One more implication that her decision has is on funding. I know that how things are funded shouldn\'t be a concern for patients, but by issuing a diktat to PCTs she has effectively damaged their capacity to plan expenditure. Some SHA\'s have estimated that it will cost them £1m to do this across their patch until the end of the financial year. Given that most of the NHS is predicting serious debt by the end of the year, where is the money required to come from ? Inevitably other services will lose out, it would be nice if the government could back this up with some extra money.

I should make clear that I support absolutely the right of anyone who would benefit to have Herceptin on the NHS. I\'m not anti the drug at all. I just wanted to put my point of view across, that it has far wider implications for the NHS than just funding one drug. It leaves the door open for drug companies to promote new products through the media and attempt to bypass the licensing rules that we have. This may be well and good for Herceptin, but can the same be said of future drugs ??

Anyway - rant over - and breathe ...

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Re: Does anyone want to discuss anything?

Hi Joy It may be better if you could re-post your Herceptin and Taxol queries to the Treatment for breast cancer forum as you are likely to get more replies to a treatment question there, hope this helps,
Kind regards
BCC Host

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Re: Does anyone want to discuss anything?

Caron Keating ---I read the book and I found it less bad than I\'d expected. What comes over is the love Gloria had for her daughter and the loneliness she and her daughter felt when dealing with breast cancer, it really does have a huge impact on family relationships, not always for the better. I think Gloria\'s book is an honest account of what it is to look from afar at your daughter and her struggle to understand why she got breast cancer, and her struggle to cure herself.

I was really surprised that Caron felt it was her fault that she got cancer, and felt ashamed of it. Luckily I don\'t feel the same way, nor do I intend to go down the alternative treatment route. This book is great publicity for not being swayed too much by a lot of the alternative therapies on offer, although Gloria does say some of them have helped.

Caron spent much energy trying to see reasons for her cancer in her past family relationships, she cut herself off from her mother by moving to a continent 24 hours flight away. It must be torture for Gloria to have had to deal with this, to me it seemed Caron as well as blaming herself blamed her mother and father for getting cancer. I am so grateful that I think I got cancer because of a random genetic malfunction which is probably a matter of a number of factors coming together which I had the bad luck to have. Maybe future scientific research will find out more, that is my hope.

It would be nice if there were a cure but I don\'t think it will be found in coffee enemas. Neither I think did Gloria but she respected her daughter\'s wish to fight the cancer in her own way. She certainly doesn\'t suggest not having treatment is without its downside. the description of the ulceration of Caron\'s breast which happened after she refused to have a mastectomy doesn\'t make easy reading.

As for other issues, I feel that we won\'t get a cure from drug companies as it is in their interests to make cancer a chronic disease not cure it. The country doesn\'t want to pay for long term treatment so there is a problem here - people with money will get drugs, others won\'t. The government would probably like us all to drop dead and not cost them anything. God what a cynic I am.

I am in favour of euthanasia, I don\'t want to have to look forward to a long painful illness, surely it is better to go while you have a decent quality of life? I don\'t have to keep myself alive for my children thankfully as I don\'t have any. However, I may change my mind if at some point I do find out cancer has spread as no-one really knows how they will feel until they are in a particular situation. Imagining it may well be worse than the reality.

Mole

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Caron Keating. I read parts of the book which were serialised in a paper.
I think we all have to choose our own path, mine\'s been a pretty conventional one but each to their own.
Sadly I have made friends with other\'s with secondaries, no longer here, who also had no lymph involvement. They all chose conventional treatment but did not live as long with their mets as Caron did. I was diagnosed with breast cancer and bone mets at the same time, Tamoxifen kept my mets stable for 15 months and Arimidex has put me into remission.
Belinda.xx

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Gloria Hunniford\'s book Dear All,

Well I finished this a couple of weeks ago and happy to comment on it. To be honest I was surprised at the way Karon Keating (sp?) dealt (or rather didn\'t seem to deal) with her breast cancer. I thought that she was incredibly selfish to uproot her children and go halfway around the world in search of all sorts of weird and wonderful alternative cures.

I also found it a bit gobsmacking that her original primary was about at the same stage and grade as mine, with no lymph node involvement and yet she had such an early death. I do wonder whether perhaps if she had not refused tamoxifen point blank, this may have made a difference? She also seemed to waste so much time trying to find out why she had got breast cancer in the hope that this was the key to a cure.

For me, the big thing that it did was to reinfoce my decision not to step onto the pathway of alternative medicine as there are so many different potential \"cures\" that you can (and she did) spend the rest of your life and an awful lot of money trying them all. Karon seemed to try just about everything, and whilst it may have prolonged her life, it certainly did not stop the disease from killing her. In the book it appears that she becomes so obsessed with alternative treatment after treatment that she doesn\'t seem to have much time for her family. GF also describes so vividly what its like for the family and the pain that the separation caused her and this reminds me that its not just me going through this and that I need to support my family too.

OK, will step off soapbox now. Interested in other opinions on this book.

Wynthorpe

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DON\'T know if this the correct thread -- --- Still a bit, or lot, confused about things. But with reference to Gloria Hunniford, just wanted to say that I have just come in from hospital and there is a lovely letter waiting for me from Gloria. She is going to play my cd with her family this Christmas and wishes me well with my treatment. She talks openly about her feelings on losing a child to cancer and it is a lovely, warm letter. Whatever my views on her book or tv appearances which were mixed because I realise that we all deal with crises in our own way, her letter reduced me to tears that she took the time out to write to me and give encouragement to another cancer patient whilst grieving for the loss of her daughter.

Re the Herceptin, I am still not sure exactly WHY there is such a definite time limit on HER2 plus people not being able to receive it after their chemo has finished.... Also, re the Taxol which I am not well up on, if you get a second primary or recurrence, can you then go on to have Taxol if you didn\'t have it the first time round? Sorry if these are two stupid questions but if someone could answer them SIMPLY, I would be grateful.

Joy xx

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Love to, Jane ---but not this week, I\'m afraid. I\'m in the thick of parish Christmas activities and will be taking the funeral on Wednesday of a woman who was my age and who died of cervical cancer after only 3 months illness. It was quite a salutary reminder for me that bad things are happening to other people too!

But once I can draw breath there are several issues on your list which deserve their own thread.

Kathy

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Re: Does anyone want to discuss anything?

Me too Hi Jane

I\'m gettting withdrawal symptoms too from discussions on the old forums too. I thought they were great - generally we could have different views but people respected that.

I haven\'t been on to this new site much either, I find it harder to use and I think that has put me off - the scrolling up and down drives me mad. Also have been busy and with the added factor of an unfamiliar web site I have had less inclination to come on here.

I will go and read your posting re Susan Sontang.

I thought that you brought up a list of interesting topics.

Gloria Hunniford\'s book - I haven\'t read it. I read an extract in a national newspaper but found it hard to read. It just felt a bit too close to home.

Arimidex - it has come out at the San Antonio Conference that it has better results than tamoxifen for post-menopausal women. I know that it\'s a lot more expensive so I guess funding will come into yet again. I am pre-menopausal but would be prepared to have my ovaries out/suppressed for the added benefits of taking arimidex - my oncologist is reluctant to do this. Also if I am HER2 positive (result still to be confirmed) it\'s questionable what if any benefit tamoxifen has so I would be even more inclined to push for it.

Patricia Hewitt - my GP said that it\'s alright for her to say that everyone should get Herceptin who needs it but in reality that simply won\'t happen because of lack of money. In that sense I think she has made it worse - raising people\'s hopes only to leave them with no Herceptin or a fight on their hands. There was something in the Observer yesterday avbout funding and what politicians are saying should be disregarded - I will see if I can find the article.

Euthanasia - personally I would welcome it under certain circumstances. My Mum died of bowel cancer, she had been in a hospice for weeks. By the fourth week she had a turn for the worse, we sat by her bed from Thursday until late Monday night literally just waiting for her to die. It was awful. She was unconscious, was heavily dosed up with morphine because otherwise she was in pain. The effect it had on my father was truly terrible. I would have welcomed someone discretely tweaking up her morphine - at that stage anyway. My fear is that my children may one day have to go through that with me and I would hate that. These views are just my personal ones and I sincerely do not wish to offend anyone by them - I appreciate that it is a sensitive subject and that we all have different views - none of which are right or wrong, just different.

I have several discussions lately with my partner (brought on I think since my even more increased fear of recurrence if I am HER2 positive) about mortality rates etc. I tend to feel that maybe mortality rates have improved very slightly but essentially recurrences still happen but have been just postponed and therefore too many people are still dying of cancer - just having a few more years before that happens. I\'ve also had discussions with my oncologist who states that oncologists tend to work on mortality rates and not recurrence rates. She doesn\'t seem to understand how fearful people who have cancer are of having a recurrence. She also works on 10 year stats and as we know that certainly doesn\'t mean that if you are alive at the 10 year mark you are free from cancer or that you won\'t ultimately die from it.

I have really missed the old forums and the in depth discussions - hope they get going again on here.

Love
bjj xx

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Does anyone want to discuss anything? I thought this forum was a good idea..somewhere to discuss the million issues about and connected to breast cancer whch affect us plus all the breast cancer items in the news. I\'m reluctant to raise any more. Susan Sontag went down like a lead balloon (thanks Daphne for trying!) and otherwise there\'s just one thread.

Does no one want to talk about anything like:

What do you think of Gloria\'s Hunniford\'s book?
Why are there differences between use of arimidex in primary cancer across PCTs?
Why don\'t more people get taxotere chemo for primary breast cancer?
Do we like Pink October (OK thats done to death)
Why are we told to \'think positive\'?
Great as herceptin is was Patricia\'s Hewitt\'s intervention really the right one?
Is \'early detection\' of breast cancer really a \'good thing\'
Should we campaign for euthansia?
Are the breast cancer charities organistaions for us or of us?
Are mortality rates improving or is it just longer survival..for some?

We used to discuss some of these things and more..maybe having a separate forum wasn\'t the right thing after all, but I sure am getting withdrawal symptoms.

Jane

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Does anyone want to discuss anything?

Does anyone want to discuss anything?