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Advice on ceasing treatment
Comments
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Hello @Mellyb I am so sorry to hear about your mum, its devastating news. Would you like one of our nurses to give you a call today? kind regards Giovanna2
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Thanks to everyone for taking the time to reply and send their well wishes.
I was hoping I'd find some people in the same or similar position, to see what they may have decided. Then I realised that's pretty silly because, if you were you'd likely not be alive. Sadly.
Mum is deciding today, after talking with a few people and jotting down pros and cons. But as someone said on here, it is a decision she has to make herself. I wish I could scoop her up, take away all this pain and heart ache. I simply can't, and I simply can't get my head around that fact that I'm powerless. Like someone had mentioned the best and only thing I can do is nurse her until the end so she can be at home as she wishes. Watch my best friend slip away. I'm only in my early 30s. Guess this just isn't something I thought I'd have to cross now. I know I'm not the only one though.
What I think is we are a long way from a 'cure' on this condition, these wonderful stats of survival based on 5 years just don't reflect what's really happening and the volume of recurrence people are facing. It's a lifelong disease to manage that has no cure.
The garbage that is being sprouted that this condition is no longer seen as a death sentence but rather a chronic condition to manage is simply unfair and attempts to soften the reality of this disease. A chronic condition it is not. It's terminal. It's fatal. Let's just be honest about it.
These treatments are disgusting. They are debilitating, gross, and all they do is buy a bit of time as you travel towards death. Life becomes side effects, scans, blood tests, specialists. Hardly some lovely chronic condition to manage. It's nightmare and it's torture.
The lack of understanding and awareness of MBC is appalling. It's a group of women who have been well and truly forgotten. Or maybe it's too confronting for society to deal with. It's easier to live in a fantasy world of pink parades and muffins, where we all believe the war against breast cancer has been won... All these drugs developed that ultimately do nothing to impact overall survival (yet we are apparently meant to be excited about all these new drugs, what a joke) , and specialists that don't even know which ones to give you and in what order as it's trial and error.
No. This disease is far from cured and I feel for every person, and every family faced with this hopeless situation. It's a war that can't be won.8 -
Ah @Mellyb we have all had a rude intro into the realities of BC. The most frustrating thing is the lack of consistency--what works for one person has zero effect for someone else. It's very cruel and contributes to the constant anxiety that many of us suffer. That old saying 'everyone is different' gains a whole new perspective.
On thing that is pretty constant is the need to be able to let off some steam and have a good vent about the shittiness of it all. Like many others here I occasionally use a shrink or counselor. It's a good opportunity to test drive difficult conversations in a non judgemental space where you are not going to upset people you care about and have no need to censor your feelings. You just pay to dump it all on someone who might, just might, be able to give you some tips. If you haven't investigated this option, have a think about it. Not for everyone (because everyone is different) but it helps some. Marg xxx1 -
That has exactly proven my point. No one wants to talk about the reality.. But why?
No one wants to talk about the fact that the billions of dollars raised for breast cancer research across the world over the last 30 years . Less than 5% of those funds have gone towards researching MBC. This is only just changing now.
No one wants to talk about the fact that this great new cdk4/6 inhibitor that is marketed at doubling progression free survival has NOT been proven to impact overall survival. There's a big difference between the two In January I sat in the Garvan institute discussing this with cancer scientists and specialists..
Instead we need to talk about these things in closed doors and 'censor' it because it's too confronting for society to acknowledge.
Don't you think it's time MBC is given more light?
PS I do have a psychologist.8 -
It's a good question Mel. Culturally, many Australians have a reluctance to talk about death. I think that, coupled with our often misplaced faith in modern medicine, contributes to a preference to believe something can be done. That 'they' should be able to fix what ever is wrong. Acknowledging the failings in our systems is something many people do not want to do. The cynic in me who has been involved in a variety of fundraising and marketing exercises also sees why the dark side is often underplayed.
I work for Cancer Australia assessing research grant applications. The amount of money that is spent on trying to sort this mess out is astonishing. The thing that isn't discussed is the fact that the overwhelming majority of ideas fail. Completely. In theory, the failures add pieces to the jigsaw puzzle, clues on what paths through the maze go nowhere. Anything that looks promising requires years of work and millions of dollars to--possibly--come to fruition. If the general public knew how much of the funds raised through cakes stalls, the sale of flowers and thousands of km each year spent plodding around regional ovals went absolutely nowhere, there might not be so much enthusiasm for the collective effort to find the money. Good news sells.
You are right, the focus on MBC, and other terminal cancers, is very narrow. Don't get me started on the issues with lung cancer and other forms of the disease where pink muffins are just not appropriate marketing tools.
It takes guts and determined advocacy to change societies views. Hopefully you can make some sort of positive changes using your own experience. You can always get on here and have a good yell. Sorry if you felt like I was trying to divert your discussion--like many here there is little I can say except for make suggestions from my own experience which may help. Mxx
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Hi @Mellyb. I also have metastatic breast cancer. It is in my bones and liver. My oncologist told me that my cancer was "really bad".
What you have written about your mum is the most truthful thing that I have read since joining this forum.
I had taken myself off the forum for a while because I was not comfortable.
Thanks for being so honest.
In my experience, so many people have no idea what metastatic breast cancer is. I am constantly asked if I have finished my treatment.
As for the funding! Every thing seems to be about early diagnosis and prevention.
There is no cut off point to say that you are a "survivor". My cancer returned after 15 years. I am very fit, thin, breastfed, eat healthy food and exercise. There is nothing anyone can do to prevent a recurrence.5 -
The user and all related content has been deleted.2
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@Mellyb, great post and so true. It's what we all fear, that someday sooner or later this shit disease will return. Nursing my mother was the hardest thing I've ever had to go through but i'm so grateful we had her at home. My mum had terminal lung cancer that went everywhere.
My heart goes out to you and your family through this difficult journey.1 -
Hi Patti, your post stood out to me as you're currently battling MBC with liver mets. I'm not sure if you've looked into this, but I found a radiotherapy option called 'SIRT' which is not widely known, actually we weren't even told about it by our oncology team, I just stumbled upon it through research.Patti J said:Hi @Mellyb. I also have metastatic breast cancer. It is in my bones and liver. My oncologist told me that my cancer was "really bad".
What you have written about your mum is the most truthful thing that I have read since joining this forum.
I had taken myself off the forum for a while because I was not comfortable.
Thanks for being so honest.
In my experience, so many people have no idea what metastatic breast cancer is. I am constantly asked if I have finished my treatment.
As for the funding! Every thing seems to be about early diagnosis and prevention.
There is no cut off point to say that you are a "survivor". My cancer returned after 15 years. I am very fit, thin, breastfed, eat healthy food and exercise. There is nothing anyone can do to prevent a recurrence.
As it is considered experimental for secondary cancers it's not covered here in Australia and costs about $7-$10k. What it involves is inserting tiny beads of radiation into the tumours inside your liver. They go in through the groin, through the main artery and locate the vein leading to the tumour to place the beads. It's a slow release radioactivity and apparently you're awake when they do it (like having an angiogram done for your heart) and the side effect profile is well tolerated.
In the research papers I looked at there's been great success overseas. However you need to meet a set of criteria to be eligible. Generally you need to have low disease burden elsewhere in the body and the tumours in your liver need to be clear and identifiable to access.
I sought advice from a radiologist who does the procedure at Prince of Wales. At first it seemed mum could be a candidate but unfortunately her liver got out of control. It's diffuse with tiny scattered cells throughout both lobes, they just can't treat that with this therapy sadly. Also as mums cancer is growing fast, the slow release radiotherapy which works over 3-6 months really was futile. So no good for us.
But it might be something you could look into and see if it may help you. Everyone is different and presents differently.
I do understand how you feel with the recurrence. My mum is and always has been thin, eats well, looks after herself. You're right, nothing seems to stop it.
Best wishes Patti and thanks for writing xx2 -
@Mellyb, thank you doesnt seem quite the right word, however its all I can come up with, you have brought out in to the open so much that needs and yet is not discussed fully, yes, I have metastatic breast cancer, yes I will die, perhaps not from it, but with it, I have no prognosis other than statistics, I dont want a prognosis, but want to live for as long as I can - well -
I sat with both my mother and my father in hospice, one had non hodgkins and one had methosilioma, we did all we could and in the end it was a privelidge to sit there with both of them, I did not want either to go, however it was their time, nothing more could be done, and now its my turn, or will be in the distant future, you have opened up a conversation that is well and truly overdue to aggie, patty and zoffiel,thank you, we are all intelligent women on this forum, its just a pity that some of our doctors and treating specialists dont see that. This is the "system" we have and we have to make the best of it, however when women like your self and those I have mentioned plus all the other women and men on this forum start asking questions and want answers then maybe just maybe something may change.
You are a strong woman as is your mother,and yes 30 is a very young age to have to go through what you are now dealing with, I cannot take away your pain or your mothers, just know, that we, all of us here on the forum are with you, and as zoffiel said maybe, we can all be a part of the change that needs to happen.
wendy558 -
Oh Aggie! Not sure where you are at with treatment however I sense your frustration in your post above but I do take umbrage in part of what you said - "...'Early' detection is a fiction, merely a call-to-action to the layperson to participate in screening programs..." to me this comment is a little harsh. Isn't this about awareness and having it caught before it becomes mets? We are all entitled to a view but we are not here to upset those that are just starting out!
Mammogram for me in 2013, no indication, 2015 and it is a 60mm tumour but contained to the breast.
Mets is a bloody awful thing and I've watched both Mother in law and Mum lose the battle with mets - BC was not in the equation.
Please take care and know there's support here for you and others
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What you write is so very true @Mellyb. While I understand the need for publicity, I am not comfortable with the pink wash of breast cancer.
I find the stats round breast cancer survival to be challenging to pierce. As I understand it the five year 90% survival rate that is often referred to is an overall survival rate. Personally, I don't find the averaging of this number useful. The Cancer Council says the five year survival rate if the cancer hasn't spread beyond the breast is 96%. If it has spread to your lymph nodes it's 80%. Sometimes this stat is given as 83%.
I think this difference needs to be highlighted more in the campaigns about getting women to have mammograms. @JJ70 learned yesterday that only 15% of women respond to the letter you receive at 50 to have a free mammogram. Correct me if I'm wrong Jo, but you also learned that mammograms are free from 45, and have significant effect on mortality rates, but the only thing that's preventing this change in invitation date is funding.
So in the tsunami of hope, pinkness and medical breakthroughs, Stage 4 people get lost. While I understand prevention is better than a cure, I think some scary TAC or smoking style advertising campaigns every now and then amongst the pink hope would be beneficial.
Last night Australia's population ticked over to 25 million. For the sake of this premise, we'll say half of that population is female. That means 1,562,500 of women in this country will have a breast cancer diagnosis at some point in their lives. This is a staggering number.
Every day two women under 40 are diagnosed with breast cancer. Their prognosis is not as good as women over forty. Why isn't self examination taught at school in health classes? (And bundle in some testicle self examination for the boys while you're there thanks). I will be taking my daughter and niece to the GP to give them a lesson when they're in their late teens.
I understand that too scary puts people off (though that doesn't seem to affect the smoking and road accident campaigns, not to mention skin cancer. Remember the ad a few years ago with the woman in her twenties dying from melanoma? I do. And there's that stroke ad on tv right now of the poor lady being turned in bed by her carer) but I'd like to see the BCNA balance the pink hope with some sobering presentations of the reality of breast cancer. And to refresh the hopelessly outdated pink lady logo.
Australian women are more likely to be diagnosed with breast cancer than any other cancer. And after lung cancer, it's the cancer they're most likely to die from. (Lung cancer deaths are expected to decline due to the decline in smoking). How many people are aware of that? Yet I can tell you roughly how many people die on Victoria's roads each year.
Awareness, and the implementation of procedures to support what happens as a result of awareness (increased numbers attending screening, increased numbers needing treatment, increased numbers needing support services after treatment for eg lymphedema, mental health) takes money.
I would like to see the BCNA and other breast cancer organisations in Australia:
1. Raise awareness of the seriousness and the prevalence of breast cancer as a threat to womens' health.
2. Lobby the government across a range of areas with the underlying basis that more money up front will remove a huge financial burden later. For example, subsidise the oncotype test for the women who fall into the grey area of needing chemo or not. 70% of them won't, and that will save the health system a huge amount of money, not to mention relieve people of a tremendous amount of suffering. And another example, drop the inviation age for mammograms to 45. That will save a lot of lives and therefore healthcare money in the long run. Not to mention overall economic productivity in our population. When the simple blood test that's recently been discovered (https://theconversation.com/a-new-blood-test-can-detect-eight-different-cancers-in-their-early-stages-90221) is perfected and available, how quickly will the government be prepared to roll it out so it's affordable?
3. More promotion of the risk factors. There's been an ad recently with a plump man standing at the fridge considering a midnight snack, and then we get a gross image of fat coating internal organs and he reconsiders. A survey in March this year found that only 16% of Australians knew the link between alcohol and breast cancer. Alcohol is a Group 1 carcinogen, like asbestos, arsenic, processed meat and tobacco. I was not in that 16% before I was diagnosed. I'd like to see an ad where a woman goes to pour a glass of wine, has an image of a woman with a mastectomy scar, and/or dying in slow agony like my sister did, flash through her head, and then pour herself a glass of mineral water instead. This shit is SCARY. We need fewer pink lunches and pink prizes and pink badges and more information of the facts.
4. Metastatic breast cancer needs more light shined on it. More people need to know about it and understand the risks. More awareness around the reality, prevalence, and rates of recurrence (1 in 10 if your cancer has spread beyond your breast, 1 in 20 if it hasn't according to this 2012 article: https://theconversation.com/how-likely-is-my-breast-cancer-to-recur-and-spread-7715). And having shone the light, more research money needs to be poured into the area. So direct campaigns to raise money for metastatic research. NED is the best we can hope for because breast cancer is a sneaky fucker that can come back at any time. Which is an arse of a way to live. Or die.
Well geeze I've had some time on my hands today to get this rant down on screen eh? Fuelled by a certain level of end of the tetherness due to lack of sleep... Thanks again for that breast cancer.
Mellyb, I'm so sorry your mum, you and your family are going through this. I have an idea of what you're going through as my sister died from this heinous disease two years ago. Her doctors thought they'd 'got' all her cancer but a year later it came back. She lived another two years before dying at 47. My heart goes out to you and all I can say is make some good memories and if your mum wants to leave a legacy, do your best to honour her wishes. She'll always be with you. The biggest of hugs to you all, Kate xox
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@wendy55 I won't say my pleasure, but perhaps I'll say my passion. My sister and I had more than one conversation along these lines before she died. The numbers are just increasing so fast, it's an avalanche gaining pace and we just have to do something different in response if we're going to improve outcomes. K xox1
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Hi All. @kmakm - yes only 15% of women respond to the first invitation letter at 50. I was gobsmacked to learn this stat on Monday (direct from Medical Director of BreastScreen WA)
Mammograms are free from 40 Kate, not 45 and yes, the mortality benefit of screening in 45-49 year olds is way up at 30% (second only to 60-64 year olds at 37%). Pop that into a '20% of breast cancers are found in women 40-49' context and add that they are usually more aggressive, does make me wonder quite seriously... WHY ARE WE NOT SCREENING AT 45!! (We also need to take into account that 20% is a FALSE LOW. Those ladies getting a positive diagnosis in their early 50's may have found their BC in their late 40's had they been invited to screening)
Under 45, mortality benefit drops right down to 7% - due to a combination of lower incidence of BC and breast density (ineffectiveness of mammogram to find the BC). There are aslo high false positive rates under 45.
Data tables below:(source: BCNA Age group (years)
Number of Australian women
diagnosed% of all women diagnosed *
Younger than 20
1
Less than 1
21 to 29
65
Less than 1
30 to 39
705
5.2
40 to 49
2,437
18
50 +
10,359
76.4
3
