Hi Celeste Your brother’s lucky he’s got you for a sister. Well done for getting the new treatment for him.
I think JaneRA made the point some while ago that maybe we could learn from Aids activists. I agree that breast cancer patients as a group seem to be quite passive and that’s the main reason that made me join Breakthrough Campaigns & Advocacy Network.
One major difference with Aids/HIV is that it is caused by a virus whereas breast cancer is caused by …who knows.
I don’t think it’s acceptable that better progress isn’t being made in breast cancer prevention and that there isn’t a cure. Paradoxically, I think the fact that so much money is raised for breast cancer and there’s so much publicity about the disease has caused it to become a big industry where lots of scientists tinker around with genes and drugs, but whether there’s enough of sense of urgency to crack breast cancer, I don’t know. Sometimes having a lot of money and the prospect of plenty of future income makes organisations complacent. Perhaps we need then to be more lean and mean.
Take the example of Vitamin D that ChristineMH raised in another thread. How come after 63 studies over 40 years scientists can’t say for sure whether we should be taking more Vitamin D to reduce cancer risk? How come that it took the National Cancer Plan implemented in 2000 for the government to get a grip on all the cancer research activity going on by academia, charities and companies. Think how much waste, duplication and letting opportunities slip through cracks probably went on for years before (and a lot of it probably still goes on).
The cancer industry has a life of its own. Patients come and go and some die, but while 41,000 women get breast cancer each year, it’s not going to run out of steam.
Should we Act Up? I guess what I felt most after cancer treatment was rage and a certain sense of combatitiveness. After all, ten chemo treatments had still left me with less than a 50% chance of seeing 45, which is just not acceptable. That has been my motivation for lobbying for herceptin-based treatments on the NHS for patients who need them.
Politically breast cancer patients are probably only second to AIDS patients in our ability to get our acts together politically. AIDS patients have some advantages over breast cancer patients, such as generally having fewer family responsibilities and, for gay AIDS patients, living in a community, which makes it easier to work together. I could get alot more done politically if I didn’t have a toddler to potty train (he learned the hard way yesterday that big boy pants don’t hold wee. This is going to take a looong while, I fear) and if I lived in a community with Jane RA and SLP we could really get things going.
Biologically, AIDS actually is a somewhat simpler problem to control, but not to eradicated. Incidently, a solution to AIDS was found so quickly in part because AZT had been investigated as a cancer drug and failed. The problem is that cancer isn’t just one disease, but hundreds. Even breast cancer is now believed to be at least five distinct diseases, with varying prognoses.
There are some truly dedicated cancer researchers, including some who are very motivated because they have lost family members to the disease. So, it is an industry, but not just an industry.
You ask whether reconstructions and counselling should be denied to women suffering from breast cancer in order to pay for Herceptin and other life saving drugs. The answer is YES of course they should. It does not make sense for women to be denied a drug such as Herceptin that may reduce their chance of DYING from bc by 50% by administrations that seem to have endless money to waste on counselling, complementary therapies and other non-proven pseudo-scientific ‘comfort blankets’ for women whose lives are not so immediately threatened by their bc. It is unacceptable for anyone to die from bc when there is a treatment available which might save their lives which they are denied because of lack of money. All efforts should go into life saving initiatives to give everyone with bc as good a chance of survival as possible. Once this is done, and I agree it will take activism by many deeply committed people over a considerable period of time, we may have money to spend on relative luxuries including counselling and reconstruction. I realise my views are controversial but the only way to do justice to your tough question is to provide the equally tough answer it begs.
On a lighter note - all the best for a very happy and healthy new year.
Roisin
Spending choices Roisin, you’re right, this really is a controversial area because if you stop spending money on reconstructions and other therapies for breast cancer that don’t save lives, it’s only a small step to extending it to stop spending NHS money on anything that doesn’t save lives. What about IVF, hip replacements - they don’t save lives. Should obese people have operations refused as was the subject of media interest at the end of 2005?
I don’t think counselling and reconstruction for women with breast cancer are luxuries, they are part of breast cancer treatment. If you take them away completely, I believe the effect is that many women would take longer to resume normal family and working life because of psychological and emotional difficulties and if they can’t work, that has a knock on effect on the economy and the taxes they contribute to pay for the NHS.
Based on my own personal experience of breast cancer, I firmly believe that when you are ill, the emotional and psychological recovery is probably just as important as physical recovery and to ignore them and just focus on life-saving physical treatment is just storing up trouble, not only for individuals, but the NHS. I had counselling in 2004, paid for by my employer, but if I hadn’t had that and not been able to have it from the NHS, I think I would have been heading for a breakdown and would have needed quite a lot of time off work to recover. I appreciate you have a very different view on this, but there we are, that’s my view. It’s an interesting debate.
I think developed countries need to wake up and accept that there is only a finite amount of money for healthcare and there should be some proper public debate about funding and prioritisation and whether money is being targetted properly and fairly and whether there’s a role for private health insurance.
Daphne I agree that the psychological and emotional consequences of bc diagnosis and treatment are hard to live with. I am triple negative and have had all the treatment I am able to have. I don’t think there is an hour of my life in which the terror of recurrence does not jump into the centre of my mind many times and it is very hard to deal with. I am just haunted by the fact that there are other women with more aggressive cancers than mine (I am triple negative) who would benefit from Herceptin for example who cannot get it because of lack of money. I cannot imagine how they must feel particularly if they have young children as many with this type of cancer do.
Acting Up? No perhaps having more of a sense of self worth Hi Christine
Firstly let me say you were/are quite right to feel a sense of rage regarding your prognosis - so should we all.
Let me first go back to the HIV/AIDS comparison. I am not a medic but I do not think in any way shape or form that this condition was easier to combat/understand/resolve than BC, it was a virus that constantly changed. I believe that AZT which had not been successful for cancer also failed for HIV/AIDS. I also agree that without family responsibilities you/we could achieve much more. However HIV groups were not always productive at the time I remember lots of in-fighting among different gay groups and lots of very unproductive behaviour, it certainly wasn’t a big happy community, that you seem to suggest.
The answer may well lie in some of the posts I have read in this thread. Never once whilst involved in HIV/AIDS did I ever hear discussions regarding either a cure OR treatments to help with psychological survival. It was a common understanding I believe that both were vital and all would be achieveable.
As the HIV/AIDS campaign was led predominantly by men, so is BC predominantly led by women. I believe our position and attitude fundamentally may come down to our own belief in our own self worth, and of course not wishing to make a fuss, or perhaps even be unladylike! I certainly cannot remember a Live Aid type concert for breast cancer and yet there were lots for AIDS at the time.
Roisin certainly many do need or could benefit from counselling, because it is living we are talking about here not just surviving, but frankly I think we should all take ourselves off for assertiveness training for accepting the unacceptable.
All talk of lack of resources leads me to wonder yet again why we do not just cull a layer (or two)of administrators, think how dreadful that would be - we may all have to go back to using our common sense.
Happy New Year to You All - time to rock on methinks
two weeks after end of treatment ??? My extensive grasp of the english language enables me to sum up my thoughts about the first post in this thread in the following way
What a load of c**p.
Two weeks after treatment I was so worried about living with the fear of bc returning that I thought it might actually be easier to die right then. You’ll be pleased to hear I dont feel that way now but if I didnt know otherwise I would think it was a joke. I dont think anyone could bounce back 2 wks after, regardless of counselling, antidepressants coping skills or anything else.
Christine good luck with the big boy pants. I ‘dried out’ my boys within 12 months of each other and found the best way to get them to pee on demand and therefore stay dry was to let them pee in exciting places. Drain covers, hedges, or in the peepee corner in the garden. A friend of mine even put cheerios down the toilet to encourage her sons aiming skills. Indoors it was a half hourly trip to the toilet required or not. The youngest one started to ask to go for a pee before his favorite programmes started so that I wouldnt disturb him when it was just getting interesting. They were both dry at night almost immediately too, as I told them they could get out of bed as often as they liked for a pee and any excuse to get out of bed is a good one for a small boy!
Sorry everyone for going right off the point!
Thanks 5starshiny I think the thread probably needed to go off the point and though not a mother I think your boy pee training hints are just great…publish them.
Jane is right your pee training tips are really good and you should publish them. I don’t think the thread did go off the point. The whole point (tee hee) of a discussion is that it is taken in any direction that follows on logically from previous points. Your comment was prompted by ChristineMH and hers by etc etc etc
Jane - I am puzzled as to why you think the thread SHOULD be taken off the point. I don’t think it was but am interested to know why you think it should be. Forgive me if I am interpreting you incorrectly but is there a hint of censorship here?
Celeste Thanks for your post. You’re absolutely right we should have more of a sense of self worth. It is hard to develop this when recovering from the many traumas and losses associated with bc and its treatment but I know I would certainly benefit from some sort of assertiveness programme but where do you get it from?
Firstly on assertiveness. There are loads of good and not so good trainers providing assertiveness training. Most local authorities run regular evening classes on assertiveness but not specifically aimed at people who have cancer. I was trained to run assertion courses through an organisation called the Redwood Women’s Training Association which was originally founded by Anne Dickson who wrote the book A Woman in Your Own right. Since I trained in 1990 there are lots of other accredited courses available. As I say there are good and bad people out there. Principles of assertion training are firmly based in the cognitive behavioural tradition of counselling which has its merits in many circumstances although limitations too…so though I’m a trained trainer I am very aware of the limitations of the approach.
Before I retired as well as being a teacher trainer I had run dozens of very successful assertiveness courses for people at work…mainly women. I have also run specialist assertion courses for lesbians and gay men. I don’t know any trainers who specialise in providing courses for women with cancer but can imagine how such courses could be run…BCC have you thought of including some sessions on your Healthy Living Days???
I would consider good assertion skills training to be one part of pscyhological support for people with breast cancer. (if people felt they needed assertion skills which prompts this post) I agree with Daphne’s sentiments on the importance of this and disagree very much with your views Roisin on counterposing spending on reconstruction and counselling with spending money on drugs. Both are essential.
I favour high quality psycho social interventions, and agree that some complementary approaches to ‘self healing’ can do more harm than good…hence the need for quality evidence based research in this area.
Sorry again if you thought I was trying to stifle debate. I was perhaps censoring myself because I was quite shocked by your view and wanted some time to mull it over before saying so.
Jane Thanks for the info on assertiveness courses. My confidence is at rock bottom since finishing my bc treatment and Celeste’s post made me wonder if an assertiveness programme might help. It’s not so much coping with the cancer as coping with the fear of it returning and also the return to the ‘normal’ world when one’s physical appearance as well as mental attitude is so changed. It’s very hard to get it right and somedays I don’t even feel like trying I’m so convinced the cancer will get me sooner rather than later anyway.
I’m sorry you are so shocked by my views. I don’t think they are particularly shocking or uncommon. In an ideal world I would like there to be enough money for everyone to have any treatment - physical or psycho-social- that they feel would benefit them.
However, when money is short I believe that if there is a potentially life-saving treatment which is being denied to women because of shortage of funds then we should re-consider our priorities. I am not saying that the after effects of diagnosis and treatment are physchologically and emotionally easy. I think I am an excellent example of how tough it can be. What I am saying is that at least I have the comfort of knowing that I had all the treatment I could have. NONE was denied to me because of lack of money. I would like everyone diagnosed with bc to get all the treatment they can benefit from.
If we have to sacrifice other treatments which are not scientifically proven to work such as complementary medicine and counselling then I personally would find it easier to live with that decision than to know that there is ample complementary medicine and counselling in some areas of the country in which women are being denied drugs such as Herceptin and therefore the chance to live. The knowledge that this is happening adds to my psychological distress.
I don’t think these views are shocking. It is shocking that we have to juggle with these equations but when financial resources are limited this will always be the case. I personally would ban all complementary medicine from NHS provision until it is proven to work. This would save a huge amount of money. How can we justify paying for complementary medicine and many forms of counselling when drugs that are known to save lives are being denied to people on a daily basis?
Ideally I would like everyone to get all the complementary medicine, counselling and other treatment they feel they would benefit from. But I would also like everyone diagnosed with breast cancer to get the most effective proven form of treatment irrespective of financial cost. If a choice has to be made between the two then I think we have a moral obligation to try to save lives first and then work on improving the quality of those lives.
If 6 people fell in the river would we pull 3 out and and leave the others in there because the ones we had pulled out needed to be counselled in order to come to terms with their trauma? I think we’d try to save all six lives. Cancer treatment is no different because cancer is life threatening. Everyone who needs Herceptin should get it as a matter of right.
I hope this helps to make you feel less shocked at my views.
Assertiveness training I have spoken to the appropriate members of BCC regarding including assertiveness training on our Healthy Living Days. At present these days mainly consist of complementary therapies, concentrating on positive health, well being, diet and nutrition. We could certainly look at this as a question in forum feed back room when it re opens later this month.
BCC Host - More Controversy It’s good to hear that Breast Cancer Care may be interested in the possibility of providing assertiveness courses. It’s not so good to hear that its healthy living days mainly consist of complementary therapies. These are not proven to work. I regard provision of them as a waste of charitable funds. These might best be spent in organising some kind of activism aimed at making drugs which are scientifically proven to extend or even save life available to all who need them. Alternatively the cost of providing complementary therapies might be donated to charities which fund research into scientifically based treatments.
I see you’ve already been filled in by Jane RA, re assertiveness training, and I don’t think there is much more to add to that, except to say there are probably two distinctions.
A short course enabling you to say and do key things assertively
A longer course enabling you to BE assertive.
A subtle but very distinct difference. I hope this helps you in your choice.
Although I was making a serious point, it alone would not quite be
the whole picture. I believe the issue is not solely about presenting our point assertively but our overall perception of our power.
Interestingly enough on another thread (Google - Breast Cancer) you can see that I requested BCC to contact Google and have an inappropriate reference removed. The response from BCC is that they did not have the ‘power’ to do so. I can well understand that they may not have wanted to get involved or were too busy on other things but it is worrying if BCC - a major cancer charity - do not think they have the clout or influence to get this removed. Therein may lie my point. - You are as powerful as you perceive you are!
As for the pro’s and con’s of funding and where it is best spent. Things are rarely black and white and this issue is incredibly complex. However I can tell you this (I have indicated as much in a previous post) - I work with some people whose initial emotional issue had a physical basis, because the treatment they received did not accommodate their emotional issues, their mental health declined - and they now have what is known as severe and enduring mental health issues - surviving is not living, and many would have at times preferred not to have survived. I can fully support complementary therapies especially their role in pain relief and palliative care, and as a healthy indicator that we are regarded as humans not just diseases to be cured and this holistic way of healing is in accord with the social model which I fully support.
Let’s not chuck anybody out of any boat because this reductionist way of thinking does not allow us to fully appreciate the complexity of all arguments
Thanks for your comments, we appreciate everybody feels differently about this issue. Breast Cancer Care host Healthy Living days and Living with Breast Cancer courses to offer taster sessions for people who are interested in complementary therapies, healthy living and lifestyle issues as a way of supporting themselves through the difficult times they may face following a diagnosis of breast cancer. These are not offered as treatments and do not claim to have any impact on the cancer itself. Many people with breast cancer look to complementary therapies to enhance their feelings of wellbeing and these days/courses offer the opportunity to find out more about complementary therapies, diet, and general wellbeing (both physically and emotionally), in a safe environment. These are services that are generally very popular and get we very positive feedback from our clients. We appreciate this is not something everyone agrees with or would like to take part in, but it is offered as part of our holistic support package.
Breast Cancer Care offer a wide range of support services, including these forums, one to one support from people who have experienced breast cancer, telephone support groups, as well as information via the helpline, Ask the nurse email service and publications, we don’t however conduct research into treatments for breast cancer. If anybody would like more information about services we run you can find more information in the ‘support for you’ and ‘breast care’ sections of the website.
The problem with priorities The problem with priorities is who sets them and when things get implemented. One of the advantages of NICE is that it looks at the probable costs and benefits of treatments, but we are all too familiar with the slowness of NICE. In the short term, herceptin for early breast cancer certainly will push non-essential treatments out, but if the nine-month long tail of herceptin is dropped and it is used only with taxane chemotherapy, as in the highly effective Finnish trial, then the decrease in palliative care costs will largely offset the palliative care costs in the long run.
As for what I wrote about AIDS, I am standing by it. Yes, AZT was a dismal failure, but so frankly are most current cancer treatments when it comes to secondary breast cancer and most non-operable cancers and cancer has been researched for decades longer than AIDS. In fact, if scientists hadn’t investigated viruses in the belief that they caused cancer (which turned out to be true only of a few types of cancer), the development of protease inhibitors, the current treatment for AIDS, would have been much, much slower. Yes AIDS mutates, especially if patients don’t follow the very complicated regimes required, and there is still no cure, but cancers mutate as well and often with brutal rapidity.
And when I talked about community, I only meant that it would be easier to organise something if we didn’t live all over the place, not that gay men have formed some sort of united front.
One thing that the AIDS community has done really well though is that they have educated themselves about things like NHS procedures and even how clinical trials work and where the holdups in progress are. I wouldn’t have had any idea about off-label prescribing if it hadn’t been for an acquaintance who acts as an expert patient, helping other AIDS patients deal with their medication.
I guess one thing I find disconcerting is how difficult it is to figure out where the problems are. At work I get an electronic newsletter on research issues and there was a whole article recently on how the EU had just introduced legislation that Cancer Research UK and the Medical Research Council had opposed because they would make it very difficulty to conduct clinical trials. And a few years ago I know that the EU put in rules that critics alleged hindered the ability to European researchers to conduct multi-hospital trials on non-patentable substances, such as vitamins, by changing the liability rules. It just seems like there are alot of things getting in the way of research, not all of which are well publicised.
Cancer Baccup does some good work, but more needs to be done.
Roisin, controversial but interesting. It appears we all agree the ‘research’, which started this thread, would not stand any form of scrutiny. The premise is unclear - are they saying when you finish treatment all is well and that sooner (within 2 weeks?) rather than later you will be back to pre-diagnosis psychological and energy levels? Well if just for a moment I accept that idea then really I am well & truly a lost cause. As someone with secondaries and therefore will always be having treatment am I to be consigned to a life of depression – of course not it’s much more complex than that.
So what did/does get me back to ‘normal’, life saving drugs? Of course those who would benefit from having life saving drugs should have them but when you are struggling to deal with your diagnosis, treatment and life in general your world closes in around you and you do whatever you need to do to get through it. So for me that’s been having the support of my McM nurse (McM Cancer Relieve receive 1 third of their funding from the NHS?) my District Nurse (NHS) who both support me, unofficial counselling? I was back at work soon after my diagnosis, which wouldn’t have been possible without knowing I had that support. I am fully aware the evidence on the benefit of alternative therapies is controversial but there is much psychological benefit to be gained from complementary therapies – I know reflexology isn’t going to cure me but if it makes me feel good, have palliative benefit then surely that is a worthy use of resources.
A very interesting thread/debate it’s been great reading all your posts.
The problem with priorities… …may well be - who DRIVES them! I would suggest that with AIDS research was driven by user groups - are BC user groups so politically active?
Christine - I acknowledge that the development of protease inhibitors as a key factor in combination therapy may well have been to some degree attributable to previous cancer research, - but I don’t know that I would agree that HIV/AIDS groups were successful because they familiarised themselves with NHS procedures - I recall at the time they were dictating the terms to the NHS as to the procedures they wanted them to adopt. Management and Staff within the NHS were complying lest they be accused of being discriminatory. A mighty powerful weapon!
It seems you are very familiar with the issues involved in HIV/AIDS - given that there is now treatment which potentially can eradicate this virus - why then do some people with this virus not comply with their medication?
If similar success could be achieved with BC would there be a similar lack of compliance?
Something sabotaging in the human condition perhaps - or could this be gender orientated?
Thanks for the information about trials and research very interesting.