Time for a new treatment

Only sending positives to you Amanda.  I hope you know how much all of us pink sisters love you and want all good things for you and your family.  Keep on living the very best you can. XLeonie

Hi Amanda

Enough has been said about the Pink October thing and awareness on this and other forums. For those living with Stage 4 disease we need research in this area. American women are signing off their posts with "enough of this disease, it's time for a CURE!" They are starting to lobby for what Amanda is talking about.

From a study being done by Robin L Anderson PhD at Peter MacCallum Cancer Centre, I think titled "Dormancy - the late onset of secondary tumours in breast cancer", it has been discovered that -

"While it has been thought that tumour spread is a relatively late step in breast cancer, there is evidence now that tumour cells are shed into the bloodstream at a very early stage of the disease."  These cells remain dormant and can survive with minimal nutriment supply and they can evade the body's immune defences. At this stage they are not overtly harmful to the patient. This research is aimed at finding what causes them to stay dormant, what switches them on again to regrow and which gene controls this dormancy.

With findings like this it is obvious that this disease is a continuum and we should ALL be clamouring for more research regardless of where we are on the continuum - Stage 1 to Stage 4!

When I first recoverered from all the initial treatments following a breast cancer diagnosis I wanted to be a mentor and help other women through their journey but this was not possible through the recognised cancer organisations because I was Stage 4 from the beginning so I have gone the advocacy route. This has opened up a whole new world to me and I can sense a change coming, possibly driven by women like us!

Best of luck on your new treatment Amanda, I know Xeloda is a fantastic Chemo and very easy to tolerate.

With love

Joy K

I am so sorry to hear your news and ofcourse you'd cry.You are not greedy to want more time with your family.As mothers we want to get our kids to adult stage. But I think getting a lung biopsy will be a very positive step to take. Hopefully that will tell your oncologist exactly what he's   dealing with and target it with the right drugs.I think it's great that you  feel well and have no symtoms. I was very interested in what you blogged Joy. I've just read a book by Bruce Lipton called "biology of belief".He is a scientist and says something similar in that something outside the surface of the cell influences the cell to change. I think there are alot of smart women on this site and if we keep reading and networking well who knows.So much pink money must get raised but I agree with Joy that not enough is going towards bc research and secondaries.

You are in my thoughts every day Amanda and I applaud you for staying strong.

                                    Tonya xx

I just dont know what to say Amanda, I feel for you. I sense your strength and your sadness. I just want to send you a snuggle hug.

Love and light.

Maria333

I feel more women living with stage 4 Breast Cancer need to become involved in advocacy ,to be a voice and bring awareness to the needs of people with MBC. I Am looking into this.

 Oh Amanda, so sorry that your results were not good. .I have not been on this sight as much latley.You and the other ladies are always in my thoughts.

You have always given me the strenghth , to keep going when I have been so down and for that I thank you. I wish I could put my arms around you and make it go away.

I have had enough of cancer in my family. My sister was operated on last week for bowl cancer, 2 years ago lost my sister-inlaw to breast cancer , 3 years ago lost my brother to lung cancer and my dad to prostrate cancer.

There is far too much cancer happening to people now. The government needs to put more into research and stop waistng  money.

Sending big hugs and positive thoughts. Debbiexxxxxxxxxxxxxxx

Thank you everyone. I'm moving on as I have to and currently I feel good. A few points on the above:
- you make great points Joy but I disagree with enough having been said on the issue - we live in a culture where death is swept under the carpet - stage 4 disease is much the same - exclusion from the broader breast cancer community is widespread (not everywhere). The 'survivors' of EBC are more generally focused on moving on, on breast reconstruction, life after breast cancer and it's hardships. We need to engage the BC community in active discussion about stage 4 disease. We need to stop hiding because we may upset and frighten people. There was a post on here recently about how someone would not come back because they had read about someone with stage4 disease! As much as I don't want to scare people, fear is a wonderful motivator.

The numbers in in the EBC community - we need them onside, advocating for a cure as much as we are. It's such a pity to talk about us and them. Since my diagnosis of Stage 4 I have been unable to find face to face support with other women - its all online ir hospital based. I've already grieved too many people but I also see so many stories of hope - thank god for the Internet or I would feel very alone.
AnneMaree - yes we do need to be advocates but to be brutal - we keep dying.
We are busy everyday just trying to stay alive, we know our time is limited so we choose to spend out time cuddling our kids and partners, having our chemo, seeing drs, managing side effects - I would love to be out there advocating more - I haven't been even able to take a holiday because I have until this week had weekly chemo - it's priorities and my family comes first, advocacy second.
I question the statistics - Joy help me out here. How much early detection finds cancers that could be stable inactive for years without treatment? How much does this skew statistics? What are the true recurrence rates? Why if they are so successful with EBC is stage 4 still incurable? Where does the money from fund raising go? I will be looking closer into this. I suspect a disproportionate amount is spent on education and awareness.
I perhaps hold quite a bit of anger about priorities in the BC community because of my status with this disease.

At the end of the day - as Joy said enough is enough, it is time for a cure! We can only advocate for this if the entire BC community unites in this cause and stops sweeping stage 4 disease under the carpet.
Amanda xx
Ps sorry for typos - have done this on my phone.

Hi Amanda

I am so upset by your recent news - upset but still hopeful that the NEXT treatment will be the one for you.  I think that is what we have to be - hopeful. 

I agree that more advocacy needs to be done on research for stage 4 disease but like Amanda says we also want to spend more time with our families and loved ones. 

It is so difficult being stage 4 - especially if, like me, there are no outward signs of the disease.  I think a lot of people think that it's all OK for me now.  They don't realise that the cancer is really widespread in my bones and that I live in fear that it is only time before it progresses to other organs in my body.  I don't want everyone to be miserable all the time but I also don't want people to forget that I am living with a terminal illness and it is highly likely that I will die early because of it.

Anyway, I won't rant now (!) 

Sending you all my positive vibes Amanda and make the most of those cuddles with your beautiful children.

Be hopeful always!

Amy xxx

Sorry I should have been clearer in my opening few sentences. What I meant (and I was trying to be nice and not get on my soapbox) was that there is enough awareness of Early Breast Cancer going on in the community thanks to the efforts of many brave women who have pushed this agenda over the past twenty years as well as Government programs such as Breast Screen and organisations such as BCNA, BCAG and BreCan, it's now time to shift the focus onto a cure for ALL of us. What starts BC in the first place? What triggers a return?

I agree with Amanda, the cancer continuum includes all breast cancer patients and those of us at Stage 4 should not have to become invisible to the rest of the breast cancer community because we represent their worst fears and can offend sensibilities. It is for that reason that I am out and about sharing my story and demonstrating that it is possible to LIVE with advanced disease. 

It's true that screening programs probably pick up cancers that would resolve themselves and not cause any problem, however no-one can tell which ones will resolve and which ones need treatment, once diagnosis has been made the treatment begins for all, hence a skew in the statisitics. There is no way we can find this out as it would be unethical to do a clinical trial with a life threatening disease and allocate some women to the treatment arm and some to the placebo arm.

The discovery that breast cancer sheds cells into the bloodstream in the very early stages of the disease explains why I sat through chemotherapy with one woman who had been staged at 0, eight years ago and another woman who had been staged at 1B five years ago. Both had had the cancer return. Current estimates of the recurrence rate vary from below 20% to 25% to above 30%. Early stats were based on the 5 year survival rate, they are now being extended to 10, 15 and 20 years in some studies. There has been an improvement in data collection, these stats should be more accurate in the future.

We need to get this message out, there are those whose cancer will return despite anything they do or don't do, there are no guarantees, we're all in this together and we need to stick together and work towards a cure, if not in time for ourselves then for our daughters.

My heart goes out to Amanda and others with young children who need a mother's guidance, not just for a few more years but forever.

Tried to stay off my soapbox

With love

Joy k

Oh Amanda I'm so sorry to hear about your results. . .so unfair. You are always in my thoughts and I hope your fighting spirit will get you through this latest hurdle. Love to you and your family. . . .Loretta xoxo

I was letting my emotions run away with me a little Joy - your post is definitely not on your soap box but so well informed that I think you should actually get up on your soap box some more.

I want to know how we can get out there and rally all women who have had BC to get behind the cause to find a cure.  I believe that it is time to influence change in the way that donated money is spent in relation to breast cancer research.  Only today I have had an email from someone I met late last year telling me she has just been diagnosed with secondaries - another young mum with young children - we need a cure and we need it now.  And you are right Joy - if not for us then for our daughters.  

I still live in hope that I can maybe even get to NED with the new treatments becoming available. I have to.

I am so glad there are some of us here who are willing to stand up and shout out about this and be an advocate like Anne Maree and Joy - I'll stick my hand up too. :-)

Let's do it together.  Enough is enough - it's time for a cure.

Amanda xx 

Amanda and Joy,I couldn't agree more with what you have both said. Anyone with secondary breast cancer shouldn't be expected to be an advocate. Just day to day living with family and coping with ongoing treatments is enough. I think alot of women who get through treatments for  early breast cancer  just want to move on and forget about it,go back to la la land. What we all need to realize is that any one of us could wake up tomorrow with secondaries.We shouldn't be abandoning our sisters with secondaries but taking up" the cause" in whichever way we can.I think we need to question where all the pink money is going.The Mcgrath funds are going specifically to train breast care nurses and BCNA provides this website and other direct support to women with breast cancer - this we know- but what about ALL the other funds raised? where's it all going?    

Seems to be more and more young women being diagnosed with bc. They should be enjoying life and children.I don't want this to happen to my daughters. I for one,am staying on this BCNA site to help others but also to maintain a united front.Power in numbers and by networking/sharing info we'll build up a formidable group. Ok,I'll get off the soapbox now!

                                 Tonya xx

Oh  boy, so so cruel, i really hate this desease, i have lost to many friends. amanda every fundraiser every talk i do as a community liaison from now on i am going to push for more research for those of you with secondary / stage 4

more and more women i know are presenting with secondary cancer and then again and again,  i know that once we have this it hangs over our heads for ever many say once treatment is over we are cured thats it . i think not.  

imanda we are all thinking of you and your family and hope that the new treatment gives you allot more time and that researchers come up with more and more treatment to help you and others.

We are all sisters on this pink site and we all send you strength, take care love Fran

I am so sorry to hear that you didnt get the results you were expecting. I know what that's like...devastating! You have to have hope though, that this next treatment will be the ONE for you....because without hope, we have nothing. It's time for your treatment to take a detour...that's all. Your body is craving something new, so a new treatment regime it shall get!

Together we will embark on a new journey Amanda, filled with hope. I am holding your hand from a distance, and we will face this demon head on, with determination and courage! We have to believe the best is yet to come....for our sakes and for our children's sake.

Like me, you have a new plan of action...let's have faith that they will both work and blast this pesky disease to smithereens! Take care and keep up the good fight! Love Celeste ♥

Thanks for speaking up. Keep searching and fighting. Anger, fear are ok.

 Early on in my BC adventure I read, " perfect love casts out fear ". Yes, it is from the Bible and I do not go to church, but I wonder if there is a God; sometimes more than others? The mental challenges and journey with this disease interest me,  also lymphoedema  and early interevention with laser and manual drainage techniques.

  When you are having ongoing chemotherapy treatments and appointments, plus caring for loved ones, you have enough on your plate to deal with, but online forums can be effective.

There are some smart people on here.

Thinking of you and sending strength and hope and love.

Kathy.

well manda i have everyone in Mansfield can care ready to help fight your fight for more research into metastatic cancer dont know what we can do but , will anoye as many polititions etc as we can. 

come on pink ladies write your local members let them know we are a force not to be taken ligthtly. more power to the pink. h aha

13/2/12

well i did it i have sent an email to Sophie Mirabella our local member and said about the need for more research for all those with metastic (secondary ) cancers , and that yes it is important to push the screening and research for early detection and treatment for early primary cancers but that there is a HUGE need for funding to push research into other areas. etc etc so i will see if i get a responce

thats number one will send many more yet. 

Dearest Amanda and ladies, as I always tell Amanda I believe "WE ARE ALL THE SAME", thinking about stages, statistics or numbers is simply selfish.

I strongly believe we need to organise something and make a formal claim, something big...somehting powerful!!!

I have a bit of background in Sciences so please count on me in anything you feel I can be useful.

I am here to help, I am happy to help and I feel we can conquer this illness no matter what stage we are!! 

Amanda please let me know what can I do for you, look for papers, organise a database, contact ladies to sign something, anything anything anything you feel I can do please let me know!!

Love to all dear ladies!!!!

Leonor

Just let me know what I can do . Debbie xxxxxxxxxxx

Lyn Swinburne began BCNA with the power in numbers approach and see what she accomplished. so with all of us on here and all our family and contacts we must be able to ruffle a few feathers and get this ball rolling . sugestions anyone ,who do we lobby and how will we go about it. Fran

Oh wow - you are amazing - all of you!  I am so deeply touched by your response.  I have briefly looked at the NBCF philosophy for how they distribute research funding but as yet have not looked at the proportionate income spend across the sector.  

this is a quote of the research priorities for the NBCF:

Applicants requesting funding from the NBCF are advised to consider the following NBCF research priorities in their applications: 

§ Research into prevention and/or early diagnosis of breast cancer. 

§ Research addressing the social and public health needs of all individuals, and their families, living with a diagnosis of breast cancer. This also includes underserved populations such as women aged less than 50 years, women over 70 years, Indigenous women and women from culturally and linguistically diverse backgrounds. 

§ Research addressing all aspects of advanced breast cancer. 

§ Research encompassing translational research, with the potential to deliver outcomes that are clinically relevant or otherwise ready to be implemented to facilitate prevention or to improve the care of those with breast cancer. 

§ Multidisciplinary research, which encourages research across disciplines and academic boundaries. 

§ Research into novel health service delivery. 

Particular consideration will be given to projects that are innovative, non-duplicative of other efforts and have the potential for national application.

So - secondary cancer is there - yippee.  I wish I was an accountant because I can't understand the financial reports.  my very lay look at the income and expenditure seems that almost half of the generated income is spend on administrative costs - this seems too high.  I am not sure of the distribution of funds. I don't believe that we have the issues here in Australia that there are in the US where one quite political organisation generates most of the funds and therefore controls research with it's own agenda.  

I think what it comes down to is a philosophical change - that by finding answers to Metastatic Breast Cancer we will also find answers for all.  We are small fish down here in Australia in a big sea.  I am heartened that we have such a coordinated approach here in Australia and the goals of each organisation are quite clear.  (NBCF, BCNA and the McGrath Foundation) - Although within each organisation I would love to see more vocal recognition of MBC.

It is also heartening to see the NBCF have a goal of zero deaths by 2030 - probably way too late for me but not for my daughters.

Early detection is helpful particularly for post menopausal women - not those of us pre-menopause.  8 women die in Australia every day as a result of breast cancer. There is currently no cure.  

I believe that the pink washing of breast cancer has made it a "trendy" disease to have - oh you have breast cancer - that's ok, Kylie is ok, everyone who gets it is ok!  There are great programs that make you look good and feel better, A bit of lipstick and a wig - there you go, chin up and get on. Oh I always buy the pink ribbon product...

Breast cancer is not a pink ribbon.  It is a thoroughly devastating disease. It is disfiguring. It is lethal. It makes children motherless everyday.  It robs children of their grandmothers.  

I would personally like to see Breast Cancer Awareness month change from a month of awareness to a month focused on raising funds to find a cure - to inform the public that there is no cure, that beyond the pink there is a world of real suffering in everyday families.

I would like to see the rhetoric change - awareness doesn't cure anybody.

I would like to see all of us get up there and demand that research funds go to our talented scientists, to drug trials, to drug funding.  I wonder how many women with EBC realise that the drugs that are now hopefully preventing the spread of their breast cancer were all tested initially on desperate, late stage patients in the hope that it might help them live a month or two longer and if not, it might help their daughters. 

Yes, we have come a long way because of the bravery and action of many fine, amazing women over the past 20-30 years - let's not get complacent, let's move for action and let's all support each other without exclusion.

Love you all.

Amanda xx

Hear hear Amanda. 

How many times did I hear about how Kylie had it and look she's fine now...grrr.  I don't think people understand that there is no cure.

I am always happy to help in any way I can.  I'll put my thinking cap on and see what I can come up with.

Go Fran!

Amy x

well it's all go. i sent an email to Robin Anderson at peter mac a researcher into getting better therapy etc for advanced  BC and she sent this reply i didnt know how to attach it so copied it out. i am putting it here and hope others will write and lobby these people the more we write to and hound then we may actually get the ball rolling.

Dear Fran, 

Thanks for your email, My research at Peter Mac is focused on developement of better therapies for women with advanced Breast Cancer.

Our main sources of funding are from N.B.C.F and N.H.M.R.C.

I dont feel N.H.M.R.C will listen to your protest and request for more help and recognition of advanced Breast cancer , But N.B.C.F always listen to advocates , so lobbying them could be worthwhile.

Also The Victorian Cancer Agency has research grants focused on different  cancer streams , so impressing the urgency of more research into  the plight of women with advanced Breast Cancer and better therapy developement would also be a help. 

Also Maybe lobby send letters to Lyn Kosky as she has been speaking out about breast cancer since her journey recently, you could all push to see if she would be willing to atake a role in advocacy for more research funds.

just a few sugestions if i think of more i shall email you again .

GOODLUCK WITH THE ENDEVOUR ,

and GOODLUCK TO YOU ALL, and  POWER TO YOU ALL.

Yours Sincerely.

Robin Anderson

Wow Fran,you rock -  Amanda moo project - love it. Lets all get onboard.

                                                 Tonya xx

Hi Amanda,  All i can say is I'm here because of breast cancer and i am here to  help fight for a cure.    I'm one of the luckier ones  and i am hear  for those that are not so lucky  . I am on board, lets push for a cure. Lets go girls.

Take care Amanda,

cheers Jo xx

Let us know how we can help and  it will be done.

i forgot to mention that yes i had permision to let you all know what was in Robin Andersons email sorry, 

now girls write to your local members, and state nbcf, national breast cancer foundation. and victorian cancer agency. 

letters to lyn kosky, anyone you think could help this cause. 

i remember when i met Lyn Swinburne she said there is great power in numbers and we have a strong voice, this helped her start BCNA, so lets use our many strong voices. and do this not just for amanda but everyone.

2-59pm 15th Feb, today i have sent emails to NBCF research team and funding department, / Lynne Kosky / and also other cancer support groups in my area to send letters out so. now girls get emailing and use the power of our voices to get funding and most of all a cure. 

i have emailed copies of my emails to some other cancer women interstate so hopefully they will get on board too. GO GO GO 

We are being a Voice just by creating awareness and getting people stirred up.

An entry could be done for the inside story of the Beacon once ideas are summarised and continue to create awareness in the wider Advanced Breast Cancer community. Also a lot of Breast Care Nurses read these stories so that would target them too.

It would be good to gather specific things we want targeted which Amanda outlines in her entry above

'Particular consideration will be given to projects that are innovative and non-duplicative of other efforts and have the potential for national application. '

We need to check where the 'Holes' are in the Research. 

I would like to see National Data collection for Advanced Breast Cancer that delivers information useful for future planning, research, and knowledge of treatment results including lifestyle choices,location mets,receptor types,treatment,details of disease progression etc. I spent months on internet trying to get some of this info and it is just not out there. (The founder of this online group had the vision to have national data collection for ABC - it can be read in her entries)

There are 'High flyers' in our community who either live a lot longer than expected or are even cured. No one speaks of the cured. Why are we not studying this group to see if there are any trends. However detailed info is needed. 

I would like to see nutrition education made an integral part of treatment approach.I lost 12kg initially in my initial treatment due to the high grade tumors and chemo etc,and was encouraged to focus on high calorie foods to regain and maintain weight. Formal studies in Australia need to be done to show benifets of wholefood,organic diet as outlined in the Gawler foundation. Basic sense tells us our bodies need special nurturing with nutrition thru this grueling treatment that our bodies are put thru.

Just how much drug trials are going on in Australia or World for Advanced Breast Cancer. I would like to see an annual paper put out summarising all the current treatments available whether they are goverment subsidised or not. I want to be educated on what treatment is out there and make informed choices. Although I take all my questions to the oncologists I come away not gaining the information I am looking for.  I too have  children that need my love and care and I just dont have the time and energy to be consumed by this unending search for information.

Also I have noticed a lot of people who access the online group are victorians. Obviously it is encouraged in victoria. I would like to see a larger number of people with ABC accessing this website to give us a stronger voice.

It would be good if Breast Care Nurses were to receive more specialised training on the needs of people with ABC. I found the role often focuses on delivering information that is easily accessable on internet or bcna/cancer council. Following up people with ABC over the longer term is important, not just when you are in crisis or treatment phase. 

Chemotherapy sessions and many days/weeks in hospital left me disappointed in the delivery of connectedness with health professionals.

Cancer Voices Victoria recently made a submission to the Cancer (Reporting) Regulations 2012 Regulatory Impact Statement (RIS). The response from the Department of Health seems to indicate that there is a known data deficit in the area of collecting staging information and time to regression but that this will be addressed in the future.

I know the public system is mandated to report this information but I was surprised to read "currently the Regulations as they stand and as proposed under the RIS require this information from existing notifying organisations and will include private radiotherapy and day oncology centres in the near future." 

How much data is being collected and never making it to a national data base?

It seems that the more we drill down into Stage 4 disease the more black holes we discover. How can decisions be made on data that is not truely representative of our experience?

If the switch is made to more research into Stage 4, then as others have said, all breast cancer patients will benefit.

Love the suggestion regarding an article in The Beacon, however most breast cancer organisations tend to separate their membership according to staging, eg. separate mail outs for Stage 4 women. Shouldn't all women have this information? What has divided us into pre Stage 4 and post Stage 4 women? We all have breast cancer! Even the latest publication of Verve (Arimidex users) had 12 stories of women who had survived breast cancer. Only one was at Stage 4, and you had to know what you were looking for to pick it, not openly stated! Not representative of statistics, should have had at least 3-4 articles by Stage 4 women. We are being marginalised even by the phamaceutical companies!

Agree with the comment regarding breast care nurses, I am currently raising this issue at my treatment hospital and requesting that they nominate a nurse with additional training for Stage 4 women. Our needs are different and because of advancing treatment options we are LIVING with this disease for much longer.

Getting off my soapbox and going out for lunch

With love

Joy K

how are the emails going i have sent 2 to different people today in the mcgrath foundation. 

interstaters should let others with BC or ABC know of the site . or if community liaison out there? 

with all the support groups aust wide our voice would be so loud we could pop a few ear drums but we all have to do our little bit and email or write or do partitions, what ever, just do something. 

we need to help our sisters and in turn it will help us also. 

so get on the soap boxes and push the point .

i have sent messages to all the girls i did my community liaison training with they are in WA/ NSW/ SA/ QLD so hopefully they will also spread the word .

POWER IN NUMBERS, GIVES US A STRONG VOICE REMEMBER,

Hi again well i just got a wonderful responce from NBCF , i have requested permission to put the reply on here so once they agree will send to DI and see if she can put it into here for me, 

the ball is doing more than just rolling girls get going.

Fran
I am wondering if you could post some links to email addresses. I've had a week of biopsies and medical appointments but am on the ball to spend some time tomorrow emailing. It would be great to have a list of people suggested to email.

Joy - you raise some valid points re the separation of pre and post stage 4 and I especially agree with your comments regarding breast care nurses. I have received far less care from breast care nurses as a stage 4 patient when I was in a system that had multiple BCnurses than when I was considered EBC and I was inundated with information and support.

The women with Stage 4 disease receive The Beacon with an insert that I includes stories for those with "ABC" - I don't believe that the general BC community receive this information.

AnnMaree - I wonder if we can set something up for Victorian women to meet face to face though I believe Joy has met some roadblocks there - I don't see how we can be stopped from catching up for a green tea though...

Better get the kids from school and to tennis. I love you ladies.
Much love and light and despite my "nasty biology" I'm not quite ready to give up - I had 4 pretty awesome ones here at home but you have all given me another reason to keep on living and living well.
Amanda xx

Hi all, I just thought I'd jump in here as the Policy Manager at BCNA with a little bit more information that you might be interested in. I think it's so fantastic to see the energy and enthusiasm that you all have for getting a better deal for women with secondary breast cancer. Using the network as a way to connect with others and mobilise support is really great, and inspiring to see.

I thought you might be interested to know about a website called Australian Cancer Trials which lists many of the research studies underway in Australia. You can search the trials by tumour type (eg breast cancer), and by cancer status (eg metastatic, or stage 4). You'll find all sorts of information about current research that's underway - although some it requires re-reading a few times to make sense of it all!! I found 126 studies in secondary breast cancer. The address is www.australiancancertrials.gov.au

We've also recently had two of BCNA's Consumer Representatives appointed to a research study called Empathy - which is focused on trying to understand the mechanism of secondary breast cancer - that is, how does early breast cancer become secondary breast cancer, and can we stop this process somehow. The Empathy study has been funded by the NBCF with a five year grant of $5 million.

As with all these types of studies the work is underway but realistically it will be many years before we have the answers to these particular studies. Research needs to be painstaking in its approach - but the time it takes to be conducted is frustratingly slow so often. And researchers could do better to ensure that research is better coordinated so that we can build on other findings, and to promote results to consumers so that people know what's being studied and what has been found.

One way that you can stay up to date on some of the latest research results is by signing up for BCNA's e-Bulletin. The e-Bulletin includes a specific section on secondary breast cancer research. If you'd like to sign up I've included a link to the web page here. www.bcna.org.au/news/ebulletins

We also have our Review & Survey Group. As a member of the Group you'll receive invitations to participate in research - although it's entirely up to you what you choose to get involved in or not. You can find out more about the Group at www.bcna.org.au/speak-out#reviewSurvey

On the advocacy front BCNA will be advocating this year for better supportive care for women with secondary breast cancer - I think as Amanda mentioned so many women with secondaries don't have very much contact at all with breast care nurses or other supportive care health professionals - and I don't think that's ok. This is a long-term project as it takes time to get support and set things up, so much of the work is likely to be 'behind the scenes' at this stage. We'll also continue to advocate for the collection of data on secondary breast cancer, mentioned by Joy. There has been some progress made on that front but there's still such a long way to go.

On a personal note, my mum passed away from breast cancer back in 1990, so getting better outcomes for women in this situation, and ultimately looking at how we can prevent this insidious disease is an issue that is very close to my own heart. I feel really fortunate to be able work at BCNA and to come into contact with women like yourselves, who are so motivated and fired up - it's really great to see!

I hope you find some of this information useful. Best wishes to all, Michelle.

PS, sorry for the really long post!

LOCAL MEMBERS OF PARLIAMENT

TO PROMOTE AWARENESS OTHER BC OR ABC GROUPS

oncology and radiation places put up notices re awareness

mcgrath nurses

major hospitals ie: peter mac in victoria research dept, 

research depts in other hospitals. 

most hospitals have sections that sort out grant and fundings etc.

NBCF / Cancer agencies / 

Lynne Kosky member parliament. 

other cancer agencies all states.

advertise the need / urgency /   in local papers or radio explain why etc. 

let other cancer groups know what we are trying to achieve.

re email addresses i can not legally just put addresses on this site but most can be googled.

Hi Amanda,

I am so sorry to hear about your news.  Hopefully the Xeloda will help.  i am back on that at the moment and being reviewed in about two weeks.    Just make sure you do in fact eat before you take it.  Yoghurt is good.

I agree that more needs to be done for those with Advanced disease.  There seems to be so many more people out there now living with Advanced and for a few years too.

When i was diagnosed just over six and a half years ago, I contacted support groups and different departments.  They all seemed to write me off then and there.  The support groups told me they couldn't help me and some of the medical professionals (not my oncologist) heard my prognosis and just went oh well you'd better get your affairs in order because this is going to get you soon.  The "mental anguish" that this places on a person with an already altered lifestyle and length of life is terrible.

We are still here and there are many treatments still available to us.  I know a cure would be wonderful and I pray for it every day, but I am also grateful that there are so many treatments out there that even though they cause us further illness and new and different problems, at least we are still here.

I want to be able to see my girls all leave school, my youngest in 3 more years and I would desperately love to see them married and with children.  A lot of people don't realise how these things in life are so important to someone fighting this disease and so many other chronic and life threatening illnesses.

Sorry I went off on a tangent there, but I have actually spent the day with a friend of the family who is fighting multiple myeloma and these were some of the discussions we were having today.  Funnily enough he has exactly the same thoughts that we all seem to have too.  Different cancer but the thoughts are all the same.

I wish you all the best Amanda.  Stay as strong as you can be.  We are all thinking of you.

Take care

Tracey xx

Hi Amanda, Tracey and Amy,

Thanks for the blog. Thinking of you and others with ABC, who are living with and fighting for a cure for this disease.

Kathy. 

I feel impatient with the data collection issue. This information is very important for clinical judgement and planning. I want to see more information collected than staging information and time to regression. There should be another way around achieving data collection. Why can't 1 or 2 people be employed to collect and compile this information.

This is a good topic for the beacon.

A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.

Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.

Hi Amanda,

I live in NSW so I wouldnt be able to catch up in Victoria. It took 17 months till I met someone in the local area with Advanced Breast Cancer despite requesting this on many occaisions. Why is it so hard?? We recently met at my home and enjoyed a green juice and healthy organic lunch together. In 2 weeks we will meet with another lady with advanced bowel cancer. We are all keen on living well and the support and encouragement has been nothing but positive. I have posted on my local area website to alert other women if they are interested in face to face contact.

I am probably attending the Ian Gawler retreat in april 10-20,2012 so wouldnt mind catching up for green tea if anyone is available.

Here to help if I can ladies.  Sorry for the delay, been running around to doctors and scans and treatments.

let me know.

Take care.

Tracey xx

I love reading all the info you girls have provided us. Thanks!

As I am not from Australia, I was wondering if it is possible to write a formal letter requesting what we would like to be done and submit it to the parliament? Is it possible? I suppose if many many many of us sign it somebody will finally hear us!!

Amanda, what do you reckon, is that possible? does it sound a bit more powerful than a few e-mails? What do you think?