Time for a new treatment

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. 

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

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

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.

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 ?

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

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

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

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.

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.