Sunday, March 25, 2012

20 days & counting...

Today, I'm in recovery mode after a long 32kms walk around the Bay Run in Five Dock, Sydney. It was a glorious day, but 6 hours in the sun finally took its toll, and I ended up sleeping from 4pm in the afternoon until 9.30am this morning!  The only enticement to get out of bed was a healthy breakfast lovingly cooked by my hubby, followed by a very therapeutic massage...I know, I'm blessed!

With only 20 days to go until the Marathon de Paris, my final long walk on my training schedule before the big day was yesterday...and I did it! Now I'm pretty confident I'll make it across that finish line in Paris. 

I'm not sure how much you'll be hearing from me before I leave for Paris, but as promised, I'd like to share what I learnt from the NBCF's Dr Alison Butt about where fundraising money actually goes...

I decided to embark on the Paris Marathon challenge because I have a need to do SOMETHING to help in the fight against breast cancer. I'm afraid of breast cancer obviously, but it is research that gives me hope for the future...for myself, my daughter, & other women in my life - this is why I support the National Breast Cancer Foundation (NBCF), because they do 2 very important things:
  • help raise money
  • control how to best use that money for breast cancer research
Many people are supporting me with such a large sum of money, so I think they should know where their money is going, not just to an ambiguous "research" fund. There could be a reluctancy to ask too many questions about research sometimes because the research may be considered too technical for people to understand, but in actual fact if you have a person who knows what they’re talking about, who is willing to help average people like me understand what the NBCF is actually doing, I believe the community will respect the cause more and be more willing to support it.

So I asked the NBCF if I could meet with a real-life researcher, so that I could have this conversation. I met with the lovely Dr Alison Butt, who is the Director of Research Investment at NBCF.

Dr Butt did her very best to share as many facts as possible about where the donor-raised funds go, and how the NBCF distributes these funds for cancer research. And all in layman’s terms!

I discovered that it all starts with a research advisory committee – a group of about 10 people – researchers, surgeons, practicing oncologists, radiographers - a broad spectrum of representation with a background in breast cancer mostly. People familiar with the disease from either a research or clinical perspective. The committee comes together, with a role to advise where the best place is to spend the dollars raised by the NBCF, and where the areas they think research is most needed, be it in prevention, secondary cancers, or psychosocial research (ie. dealing with the diagnosis of breast cancer). A very important part of the process is evaluating where the money is spent, and whether the money is being used to its best potential.

The money usually goes to young researchers doing their research in the breast cancer area, so they are given fellowships or grants. Other projects are funded that are by people who are already earning a salary elsewhere, but are given money to do a research project in a particular area – eg. psychosocial research, or the impact of exercise and the effects it has on lymphoedema, for example.

Another area that has been funded in the past is for enduring resources - that is, infrastructure basically. Researchers need equipment and resources such as tissue banks (tissue taken from large numbers of women with breast cancer). These are national resources that need funding in order for researchers to have easy access to them.

Once the committee ascertains where they think the money should go, this goes to the NBCF board, who then have the final decision-making power on how the research dollars will be spent. Once that’s done, there is a call-out for applications to the research community on the NBCF website. Some of their biggest grants are called collaborative grants, which bring together researchers from many different disciplines. They’ve had engineers and chemists coming together with cell biologists for example, to look at new ways of doing research. There are some really exciting results coming out of these projects. An example is a collaboration between nano-technologists, together with some cell biologists. Nano-technologists have made machines on a nano scale, that can travel around the bloodstream. Cell biologists then link this with information about DNA that changes specifically when you have breast cancer. They’re looking at designing these tiny machines to go around the body, through the bloodstream and actually detect whether there are any cancer cells.  Amazing, innovative research bringing together people from different disciplines who obviously wouldn’t normally talk to each other.
Collaborative grants usually run for 5 years and are the NBCF’s biggest granting scheme, aimed to bring people from around the country together to work collaboratively – collaboration is a really important part of research.

There is a closing date for applications, which are then allocated for “peer review” (ie. reviewed by other researchers, which is a common way for research to be assessed). Most organisations that give out money for research (whether they be charities or government organisations) undergo some sort of peer review process, just to make sure that they are worth pursuing. The applications are distributed to various committees, which have public health experts on them, relevant clinicians and basic researchers. The committee looks at the applications, the track record of the people, and ask the following questions: Are they any good, have they actually got any runs on the board, can they actually do this? Other important questions are, have they published in the area, what kind of experience do they have, are they the right people to be giving our money to?

The committee will also look at the project - is it any good? Has it got a good hypothesis? Is it an important area that no one else is looking at? And is it likely to produce some decent results? They will then rank the applications based on the best, down to the less competitive ones. Based on the amount of money available from fundraising each year, there will be a cut-off of applications that will receive funding. For example, only 4 fellowships may be funded per year. Last year, apparently only 12 novel concept awards were funded. These are grants for those projects that might be a little out-there, innovative or a novel idea for breast cancer research, that has never been done before. The novel concept awards gives the researcher 2 years of funding to see whether their idea is going to get off the ground.

Based on how much money the NBCF has been able to fundraise, there will only be a certain number of projects that will be funded. At the moment, only about a quarter of the applications received are able to be funded. Unfortunately, there are always grants the NBCF would like to fund if they had more money. So the cut-off isn’t dictated by applications not being any good. There are always more that are really good, and Dr Butt says it’s always a really hard thing when you see these young people coming for fellowships, doing fantastic research, and they don’t get funding. It’s highly competitive and that’s true of research right across the world. “But there are always projects we would fund if we had more money”, said Dr Butt.

Dr Butt says the nicest part of the job is when they get to ring a researcher and say well done, your application is approved. They start with a funding agreement – an agreement between the NBCF and the researcher’s administering institution (university or wherever they work) - and then they start receiving funds from the NBCF. There’s an ongoing monitoring process, so the NBCF doesn’t just give the researcher the cash and say great, see you in 3 years time!  They hand out the money in increments based on the researcher making sufficient progress. Every year the researcher has to submit a progress report to the NBCF, to prove they’re doing what they said they were going to do. This report tells how they have gone so far, and how successful the findings are against the original criteria of what the grant was about.  The NBCF won’t pay the next increment of the grant unless the researcher has produced a satisfactory progress report. This ongoing monitoring process ensures the money is being spent appropriately and the planned outcomes are being achieved. Although this hasn’t happened to date, funding can be removed if the contractual agreement is not being met.  

Sometimes projects get delayed, particularly projects that need to recruit a lot of patients. Ethics approval can also take an incredibly long time, but this is factored into the funding agreement, so the NBCF obviously don’t start paying until the project is on track and progress is being made.  Evaluation and monitoring is usually on an annual basis.

In terms of outcomes, some of the traditional outcomes from a research perspective are that researchers may publish a paper. If they’ve finished a project and found some exciting results, one way this is communicated to the research community is through the publication of a paper, which is a very important means of communication to researchers. Obviously this is how the field progresses. People see that something has been published, their clinical trial has been effective, or a particular intervention like exercising for preventing lymphodoema, has been successful, and the way that’s communicated and what moves the field forward is publication.

Researchers may present at conferences as well, and talk amongst their peers. Again, this is a really important step forward in making sure that people are hearing about research that is cutting edge and novel. It’s also a very important step towards changing clinical practise. At the end of the day, it’s all very well rattling a few test tubes around but unless it’s actually going to lead to clinical outcomes and changes for people who are living with a diagnosis of breast cancer, it will not be of any use. It is the clinical outcomes that are the end measure of success.

Research is often a very long road. It has been estimated that the timing for discoveries to come out of the lab and end up in a new drug or a new treatment, can often be as long as 20 years. It’s an incredibly long process. Many projects fall by the wayside, but every bit of research is adding to that body of knowledge so that we have a greater understanding of breast cancer and what causes it. And what causes it to progress, and what causes it to progress at different rates in different people.

Some of the discoveries that have been made over the last 15 or 20 years, is that breast cancer isn’t actually one disease. It’s many, many, many different diseases. Since researchers have finished sequencing the human genome, which came from the human genome project which sounds very new-age and scary, it has been found that each woman’s breast cancer can be a very different disease. It needs to not only be treated differently and once we have more of an understanding of the fundamental processes of how it actually evolves, we can start thinking about ways to prevent breast cancer from happening at all.

Breast cancer is an incredibly complex disease, but some of the changes seen just in the last 10 years have been amazing. Dr Butt has worked in breast cancer research for over 20 years and says, “It’s hard sometimes to communicate these complexities to the public”.

As a community, we see the same treatment happening….it’s still surgery, chemotherapy, radiation, but in all of those areas there have been some remarkable changes. Just taking one of those three, and talking about some NBCF-funded research but also more broadly about changes in breast cancer research world wide, looking at surgery first – one of the hardest things in surgery is being able to see exactly where the tumour stops and where the normal tissue begins. Now obviously, you don’t want to take too much normal tissue because that’s incredibly disruptive. There are already many side effects of surgery, so you want to be able to take all the tumour out and leave all the normal tissue. It’s very hard to see in surgery where those margins are.  So one of the projects NBCF funded last year was a novel concept award, with the research started this year – a chap over in WA has discovered that breast cancer tissue has quite a different elasticity to normal tissue. It has a different physical feel and texture. He has an engineering background and is developing a needle that surgeons can use during surgery to inject next to the tissue, to actually measure this elasticity. This will enable surgeons to ascertain when they have actually reached the margin between tumour and normal breast tissue. Rather than patients having to undergo a number of surgeries, this is just one example of how researchers are working on improving surgery.

Then there’s improvements in radiotherapy. Dr Butt attended a cancer conference a couple of weeks ago, where a researcher was speaking about new ways of doing radiotherapy. Obviously radiotherapy has been around for a long time, but he was talking about the development of new machines that can see people in 3D.  When you’re having radiotherapy, you’re breathing, moving around, and so the tumour moves. Currently, radiation aims to go in the general area of the tumour and hope that you get it. The fact is, you can’t direct it to the tumour exactly, as much as you’d like, so you’re in danger of damaging the surrounding tissue. Some of the research being done in that area is using computer 3D modeling, so that the computer is able to follow the tumour – so the radiation beam can go straight into the tumour. Not only does the tumour get a really high dose of radiation, but obviously the surrounding tissue is not damaged. This will not only be beneficial in the area of breast cancer research, but will benefit all cancers. It is an initiative that is coming out of Sydney University.

In terms of screening, the NBCF has funded many projects in the area of trying to improve screening. Researchers are looking at using additional information, such as genetic information, so that when a woman goes for a breast screen, you can actually combine maybe a genetic profile with whatever comes up on the mammogram. This means the radiographer would have a lot more information about the increased risk that a woman might have. One of the things research has shown is that breast density is also very important – the more dense the breast, the higher indication that there may be a higher risk of breast cancer. If you can combine some sort of computer calculation of density with maybe a blood test that would look at some other factors, which obviously researchers are looking into at the moment, they will be able to ascertain if there are particular genes that get switched on, that together with breast density would increase risk. That way when a woman goes in to have a mammogram, the radiographer would have so much more information than just looking at the breast tissue and thinking what they see might be something, or may be nothing. Breast density is one of the reasons why younger women don’t actually get mammograms, because the breast tissue is too dense. So researchers are continually looking at ways of improving screening for the whole population.

In terms of chemotherapy, one of the biggest evolutions that’s happened in the cancer field as a whole, but certainly breast cancer, is this understanding of what we call targeted therapies. So no longer do you get a chemo drug that just basically not only kills the tumour but probably has a fair go at everything else while it’s there. Side effects are a massive problem in all cancer therapies, but things have improved over time. There is an understanding of different classes of cancer cells now – some of them we know are defined by having different proteins on the surface of the cell.  There are many different types of breast cancer, each with a different pattern of proteins on the outside of its cell, one of them being the Her2 receptor, which the drug Herceptin was developed to interact with.

That’s where the Herceptin story came in. By finally understanding at a fundamental level, what a breast cancer cell looks like, basic biology and laboratory-based research has been able to bring about an understanding of what these cancer cells look like and what a cancer cell looks like that’s going to be really aggressive, as opposed to one that is probably going to have a very good prognosis. They have helped figure out what those cancer cells look like early on. When a woman walks into the doctor’s surgery and has a first diagnosis of breast cancer, probably one of the most important things that woman wants to know and the doctor needs to know too, is how this disease is going to progress. Do I need to go on this drug straight away, or should I go on another drug? Which drug is going to work best for me? At the moment, we do know a lot more than we did 10 years ago. We know that particular drugs aren’t good for particular patients, so there’s no point going through all the terrible side effects if it’s not going to be the most effective drug.

Herceptin is a great story of where there’s a sub-set of breast cancers that are now what we call Her2 positive, that can use Herceptin, which basically comes along, and grabs any cell that has this Her2 receptor and gets rid of it. It’s a very effective therapy, but only for that sub-set of women who have this particular receptor.

Another drug, Tamoxifen, which has been around since the early 70’s has been called the “wonder drug”. It was the first actual targeted therapy before people even knew about targeted therapies. It targets breast cancer cells that have oestrogen receptors inside them. If a breast cancer cell has the oestrogen receptor, it needs oestrogen to grow, so Tamoxifen just comes along and goes, I look like oestrogen as far as you’re concerned, so use me. The cancer cell goes, brilliant, it doesn’t know any better. The Tamoxifen actually goes no, sorry I’m not oestrogen and it kills the cancer cell instead of feeding it. 

Researchers used to take 4 weeks to sequence a genome, but with the technology available today, it only takes 1 day. There have truly been some amazing advances. But not everyone can come in and have a chat about research. I believe you have an absolute right to understand how the drugs work that you’re actually taking and why the side effects for Tamoxifen for example, are so appalling. Because oestrogen although it might be great for breast cancer cells is also really good for your bones, and for all the other things you need oestrogen for.  One of the areas of research is trying to get drugs, without the side effects of Tamoxifen (although in 40 years they haven’t found another drug as good as Tamoxifen).

Up to menopause the ovaries produce oestrogen, but after menopause you produce it from testosterone. We have an enzyme called Aromatase, that then changes this testosterone to oestrogen.  After the menopause, giving aromatase inhibitors stops the conversion of testosterone because we don’t want patients producing any oestrogen at all. This has terrible side effects because oestrogen does a lot of good things, but it’s a necessity.

Research is continuing on targeted therapies. We know about Her2 and oestrogen, but what else is on the outside of cancer cells? Researchers are finding that there are other proteins, like the Herceptin, on the outside of cells and by using chemists, computers, biostatisticians, and the like, researchers will be able to design other drugs to target these proteins.

When we talk about prevention as another end point, there are many challenges, particularly with breast cancer. The more you understand about how it starts, the better chance you have of preventing it in the first place. But what we have learned about how breast cancer starts, is that it’s all about oestrogen and exposure to oestrogens. So we know that women who don’t have children are at an increased risk of breast cancer, for example. Some NBCF researchers in Melbourne found that nuns have a much higher incidence of breast cancer, because they don’t have children.

But it can’t be suggested that women have lots of children, and have them at a younger age obviously, which is another factor that reduces the risk of breast cancer. These are the challenges we’re facing – this isn’t a health message we can send out to the community. And the fact is we’re living longer, and the biggest risk factor for breast cancer is older age. So that’s why there’s been an increase in cancer over the last 30 or 40 years - life expectancy has increased, women are delaying having children, and they’re having less children.

Having said all this, survival rates of people with breast cancer have greatly improved over the last 10 years, because of improved screening and research. Breast screening is run by the government, so there’s no vested interest, and there is proof that it saves lives.

After my conversation with Dr Butt, my message is still the same - please don’t get fatigued….

To be honest, I'm rather tired of having to defend the importance of fundraising for research, and ward off comments about donor fatigue. I also hear many comments that there is already enough money given to pink ribbon charities in particular, which is very upsetting. In defense of the importance of research, and after getting the facts straight from the horse’s mouth (Head of research investment at NBCF), I now know that all cancer research matters.

Dr Butt stated that “all research benefits all cancers”. That is, it becomes shared knowledge that can benefit all cancers. For example, researchers may find a link between a bowel cancer cell and a breast cancer cell at the cellular level, which means a drug used successfully for breast cancer may help someone with bowel cancer, and vice versa.

The NBCF have recently become involved in another initiative worth talking about. It is the Cancer Research Leadership Forum - along with the Leukemia Foundation, Prostate Cancer Foundation of Australia, Cancer Council, Bowel Cancer Australia, and the Melanoma Institute, the NBCF are involved in the development of a national plan for all cancer research.

Cancer will directly affect 1 in 2 men and 1 in 3 women in our society, as well as indirectly affect families, friends and colleagues. Dr Butt is actually on the Forum steering committee, which has been established to drive the development of this national plan that will build collaboration between all the different cancer bodies. The aim is to make the most of every dollar given to cancer research and to arrive at better treatments, increasing survival rates, and ultimately prevention and cure.

Community feedback and suggestions are welcome and are actually being encouraged. Consultation between key stakeholders is set to culminate in a national cancer research summit in September 2012, with the purpose of agreeing on priorities and developing strategies for coordinating and funding research projects, infrastructure and workforce to accelerate efforts to reduce the impact of cancer in Australia and globally. They are wanting to hear from anyone in the community as to what a national cancer research plan should cover, or any other issues that should be considered. For further information or to share your ideas, you can contact the National Breast Cancer Foundation.

For those who would like another way to help in the fight against breast cancer, there is another important NBCF initiative called Register4 – I encourage you to check it out. Basically, this is an online register for anyone and everyone to join, where you’ll be invited to participate in research projects. It helps researchers spend less time on looking for appropriate volunteers and more time on the actual research. It could be anything from completing a questionnaire to something more involved. You don’t have to be a cancer sufferer to be involved and you don’t have to say yes to being involved if it’s not something you can or want to do at the time. There are currently close to 29000 people registered, but the aim of researchers is to have 1 million people registered. So if you’re a person who wants to help in some way, please check out Register4.

So, in case I don't talk to you before I leave for Paris...

...and in case you haven't had a chance to donate yet, consider helping me get to my new $20,000 target on my Everyday Hero Fundraising Page. Thank you!

Au revoir!!


Felicity said...

Yay for you!

Yay for your wonderful, caring hubby!

Yay for all who are working towards solving the puzzle of eliminating cancer!

Big hugs for the next couple of days,

Jennifer Reid said...

Thanks gorgeous Felicity!! Your warm "cyber hugs" are always appreciated!! Hope you're having a beautiful day xxx

Teena said...

The countdown is really on ... can you believe it is just around the corner. It is very disappointing to hear that you have to defend fundraising for research ... sad to hear the apathy of people ... especially knowing that one day Today's research may save their life. I wish you all the best in Paris.

Jennifer Reid said...

Thank you gorgeous Teena!! I look forward to catching up with you when I return from Paris, so I can tell you all about the marathon & the rest of my trip in person :)) xx

Hotly Spiced said...

That was a really long walk. Six hours! You must have been really exhausted to have slept for so long. Very excited about your upcoming trip to Paris. What a great city to host such an incredible cause.

Jennifer Reid said...

It was really long...but very well worth it :) xx

Omani Jewel said...

Good luck :-) and well done