Do we scaremonger when it comes to cancer?

Ande1975 · 13-12-2019 12:13pm

Nothing, nothing, will ever prepare you for the reality of sitting in a doctor's office and hearing the words, your parent has a grade 3 anaplastic astrosytoma. They may have 6 - 18 months.
The absolute shock and stunned look on their faces when you are trying to absorb this and also hold it together for them.
Cancer is an absolute boll*x of a disease. I don't care how you have lived your life or how modern lifestyles have changed. Who gives a sh*t. It is what is is. My parent was the healthiest, most fit and hard working person I knew.
The treatment was bullsh*t. All it did was prolong the inevitable and no one, not one person, prepared us for the reality of this disease. The surgeon who removed the tumour told us that he 'got it all'. Boll*x, he got what he could see. Giving us false hope. The radiologist told us that my parent flew through radiotherapy. Boll*x, they thought he'd barely survive it. The oncologist told us this type of chemo is very effective for this type of brain tumour, boll*x, my parent was only able for 3 rounds.
My parent developed skin cancer at the same time. A junior oncologist told us that there were cancer nodes developing in his lungs but that wasn't spoken about after. I know its hard to give bad news but f**k it, it influenced choices made that would have been different if we knew the reality.
My parent who would eat sh*t if it extended their life by 100 years was ravaged by this horrendous f**king disease.
So no, their isn't any scaremongering when it comes to cancer. Its very real and it does affect 1 in 2 people.
What we need to focus on is how to help patients and their families deal with diagnosis, treatments, asking the right questions, getting the right support.
My heart breaks for anyone who is going through this or knows someone who is. Its an insidious disease.
Sorry for the rant but its an emotive topic

eviltwin · 13-12-2019 12:16pm

Cancer is terrifying. I saw a parent waste away and die slowly and painfully over six months. No one wants to die but some deaths are worse than others.

Raconteuse · 13-12-2019 12:29pm

Ande1975 wrote: »

Nothing, nothing, will ever prepare you for the reality of sitting in a doctor's office and hearing the words, your parent has a grade 3 anaplastic astrosytoma. They may have 6 - 18 months.
The absolute shock and stunned look on their faces when you are trying to absorb this and also hold it together for them.
Cancer is an absolute boll*x of a disease. I don't care how you have lived your life or how modern lifestyles have changed. Who gives a sh*t. It is what is is. My parent was the healthiest, most fit and hard working person I knew.
The treatment was bullsh*t. All it did was prolong the inevitable and no one, not one person, prepared us for the reality of this disease. The surgeon who removed the tumour told us that he 'got it all'. Boll*x, he got what he could see. Giving us false hope. The radiologist told us that my parent flew through radiotherapy. Boll*x, they thought he'd barely survive it. The oncologist told us this type of chemo is very effective for this type of brain tumour, boll*x, my parent was only able for 3 rounds.
My parent developed skin cancer at the same time. A junior oncologist told us that there were cancer nodes developing in his lungs but that wasn't spoken about after. I know its hard to give bad news but f**k it, it influenced choices made that would have been different if we knew the reality.
My parent who would eat sh*t if it extended their life by 100 years was ravaged by this horrendous f**king disease.
So no, their isn't any scaremongering when it comes to cancer. Its very real and it does affect 1 in 2 people.
What we need to focus on is how to help patients and their families deal with diagnosis, treatments, asking the right questions, getting the right support.
My heart breaks for anyone who is going through this or knows someone who is. Its an insidious disease.
Sorry for the rant but its an emotive topic

Oh Ande, that's horrendous - sorry to read it.

Yeah "it's scaremongering" and blase "meh, when your number is up, your number is up" kinda talk... I don't like it. The tune would be changed fast if they or one of their loved ones were diagnosed... even just a scare where you're sick waiting for the results.

I mean, I get people's concern about terrifying people when they may have nothing to worry about. But equally, it could affect absolutely anybody and its so insidious in terms of symptoms - this kind of aggressive awareness-creating is necessary really.

SlowBlowin · 13-12-2019 12:34pm

Ande1975 wrote: »

Giving us false hope.

This is a very real thing. It exists at every level of treatment, people find it hard to give bad news. You are in shock from the initial diagnosis and then you have to drive home, that drive was one of the worst moments of my life, how we didn't crash.

There is a definite requirement for a more structured/caring/accurate way of communicating both the initial diagnosis and ongoing outlook.

Some staff know this, when we left the consultants room a macmillian nurse, with us in the consultants room, pulled us into a laundry room had gave us care, and truth. She was fantastic, she retired from nursing the following month a great loss.

gibgodsman · 13-12-2019 12:35pm

I think you have answered your own question here, The reason the survival rates are so much higher is because the awareness to catch it early is so much higher, I wish my Mam went and got checked, died in 2006 and we didn't know anything was wrong until after she died.

twignme · 13-12-2019 12:39pm

I am a cancer survivor, I lost my sister to cancer six years ago and I lost my mother to cancer thirteen years ago. They were three different types of cancer. So I am particulalry alert to items, news or scientific work relating to cancer. I think if I changed the word cancer to dementia in two of those cases, I would be more aware of items relating to that particular disease. But as I don't have personal experience of losing anyone close, be it family or friend, to dementia, it's not on my radar in the same way.

I think because many of us have experience of cancer and its effects, we are tuned into it more but I don't think it's in a scaremongering kind of way.

Raconteuse · 13-12-2019 1:03pm

gibgodsman wrote: »

I think you have answered your own question here, The reason the survival rates are so much higher is because the awareness to catch it early is so much higher, I wish my Mam went and got checked, died in 2006 and we didn't know anything was wrong until after she died.

That's awful - so sorry.

People don't even know they have it. All the publicity is vital.

wakka12 · 13-12-2019 1:07pm

KM792 wrote: »

When it comes to the odds of being diagnosed with cancer figures drift from 1 i n 4 to as high in 1 i n 2.
There are better treatment options and survival rates nowadays but it is predicted cancer rates will soar due to our lifestyle choices.
Very serious illness for those affected so I'm not downplaying it and people with a genetic predisposition pull the short straw but do we scaremonger in general with cancer?
Every woman is uneasy with cervical cancer at the moment in Ireland with the scandal yet in the past it was a relatively rare cancer.

That figure of 1 in 2 is just because we are living so much longer, and the biggest risk factor for almost all cancers is older age. Its much less to do with lifestyle and cancer rates are not increasing in any noticeable way among younger people. Often there is nothing you can do to detect it early or stop it from happening but at the same time it is important to scare monger a bit because for many types of cancers the odds of survival are better the earlier its caught. If people are made aware of the symptoms to look out for and know that its serious then they are more likely to go straight to he doctor

K.Flyer · 13-12-2019 1:12pm

buried wrote: »

Do or don't agree, it doesn't matter. You can't survive forever. Nobody can. Death comes for us all in the end. Nobody wants to hear it but that is a problem in itself. All you can do is make peace with that fact, then you can truly live.

Nobody is trying to survive forever, that's a ridiculous concept.
But increasing your chances of a reasonable lifespan through regular medical check ups is prudent self care.

Sugar Free · 13-12-2019 1:20pm

SlowBlowin wrote: »

A lot of cancer treatments today are crippling in themselves, almost medieval in the way they work. I have spoken to several people, who I befriended in hospital sitting in chemo with my wife, who just could not face another round of chemo and just faded away.

Chemo works by killing fast dividing cells, cancer and healthy. New cells are grown from new stem cells in your bone marrow (when it gets healthy again). When you recover you are a somewhat different person, in my wife's case:

Different colour hair red/grey to dark brown.
Straight to curly.
Appalling short term memory.
Life memories missing (but she got to watch two and a half me again as she could never remember seeing it - it was her favorite show).
Lung problems (direct side effect of chemo drugs)
No strength in hands/numb feeling in fingers (direct side effect of chemo drugs)
.....
.....

This is quite normal post chemo, the memory issues are often called "chemo brain", the other symptoms are to be expected, as is the increased risk of further cancer.

So I think this should be taken into account when saying we can treat a particular cancer. Its like taking your brand new BMW in for a engine fix and it comes back with damaged bodywork, half the power, crap MPG, and all the computer/radio settings were lost. You wouldn't think it was the same car and would probably not be happy with the fix. Well thats what a lot of cancer "treatments" offers by way of a fix. Chemo is not a great fix for cancer, its pretty much all we have got.

Agreed. I hope that over the coming years as more and more targeted immuno-oncology agents become genericized such as Keytruda, Yescarta, Tecentriq etc. that these will reduce the use of the more standard chemo regimens like (R)-CHOP, PACE, EPOCH and so on as first line treatments and in turn reduce the impact it has on survivors' health, post-treatment.

That said, I think chemo or chemo + B/T-cell targeting regimens will inevitably still have a place in 2L+ treatments even years from now, as some patients will for one reason or another be refractory to 1L treatment.

wakka12 · 13-12-2019 1:21pm

lozenges wrote: »

More deaths occur in Ireland due to heart disease than cancer. But you don't get the same fear around cardiac issues.

Because cardiac issues can often be completely turned around. Your doctor says oh you have really high blood pressure,you are very obese, you have high cholestrerol, blood sugar, you need to start looking after yourself. Even if worst comes to worst and you have an actual heart attack or stroke many people can still survive it and go on to lead long healthy lives. You can go on a strict exercise regime and improve your diet and take some meds and you can be a completely new person,your improved lifestyle will be reflected by massively improved cardiac biomarkers, but with cancer, the victim often doesnt have that opportunity to take their health into their own hands and have that control over it. Basically cardiac health has huge scope for improvement and is usually caused by lifestyle, cancer its very often dumb luck whether you develop it and also a huge element of luck whether it will be treatable

Raconteuse · 13-12-2019 1:30pm

wakka12 wrote: »

Because cardiac issues can often be completely turned around. Your doctor says oh you have really high blood pressure,you are very obese, you have high cholestrerol, blood sugar, you need to start looking after yourself. Even if worst comes to worst and you have an actual heart attack or stroke many people can still survive it and go on to lead long healthy lives. You can go on a strict exercise regime and improve your diet and take some meds and you can be a completely new person,your improved lifestyle will be reflected by massively improved cardiac biomarkers, but with cancer, the victim often doesnt have that opportunity to take their health into their own hands and have that control over it. Basically cardiac health has huge scope for improvement and is usually caused by lifestyle, cancer its very often dumb luck whether you develop it and also a huge element of luck whether it will be treatable

That's one of the most frightening aspects - the complete lack of control.

evil_seed · 13-12-2019 1:40pm

In all seriousness, F*CK CANCER!

One of my aunts died from it. I've an uncle and another aunt that has it.

F*CK CANCER!

Obvious Desperate Breakfasts · 13-12-2019 4:08pm

Ande1975 wrote: »

Nothing, nothing, will ever prepare you for the reality of sitting in a doctor's office and hearing the words, your parent has a grade 3 anaplastic astrosytoma. They may have 6 - 18 months.
The absolute shock and stunned look on their faces when you are trying to absorb this and also hold it together for them.
Cancer is an absolute boll*x of a disease. I don't care how you have lived your life or how modern lifestyles have changed. Who gives a sh*t. It is what is is. My parent was the healthiest, most fit and hard working person I knew.
The treatment was bullsh*t. All it did was prolong the inevitable and no one, not one person, prepared us for the reality of this disease. The surgeon who removed the tumour told us that he 'got it all'. Boll*x, he got what he could see. Giving us false hope. The radiologist told us that my parent flew through radiotherapy. Boll*x, they thought he'd barely survive it. The oncologist told us this type of chemo is very effective for this type of brain tumour, boll*x, my parent was only able for 3 rounds.
My parent developed skin cancer at the same time. A junior oncologist told us that there were cancer nodes developing in his lungs but that wasn't spoken about after. I know its hard to give bad news but f**k it, it influenced choices made that would have been different if we knew the reality.
My parent who would eat sh*t if it extended their life by 100 years was ravaged by this horrendous f**king disease.
So no, their isn't any scaremongering when it comes to cancer. Its very real and it does affect 1 in 2 people.
What we need to focus on is how to help patients and their families deal with diagnosis, treatments, asking the right questions, getting the right support.
My heart breaks for anyone who is going through this or knows someone who is. Its an insidious disease.
Sorry for the rant but its an emotive topic

A lot of oncologists and cancer surgeons are really bad for that. It’s like they want to believe so badly that they have cured that they think if they say the words, it will come true. IMO, it’s a manifestation of the harmful side of positive thinking. It’s why today, many women who are more than five years out from early-stage breast cancer (and therefore apparently cured) sit stunned while being told their cancer is back and metastatic. Many oncologists didn’t tell them that the chances of that happening aren’t actually inconsiderable.

I’m so sorry for your loss. Your rage is love. That’s what love is.

_Brian · 13-12-2019 4:15pm

lozenges wrote: »

More deaths occur in Ireland due to heart disease than cancer. But you don't get the same fear around cardiac issues.

You do from those of us with cardiac issues and a family history

Obvious Desperate Breakfasts · 13-12-2019 4:17pm

wakka12 wrote: »

Because cardiac issues can often be completely turned around. Your doctor says oh you have really high blood pressure,you are very obese, you have high cholestrerol, blood sugar, you need to start looking after yourself. Even if worst comes to worst and you have an actual heart attack or stroke many people can still survive it and go on to lead long healthy lives. You can go on a strict exercise regime and improve your diet and take some meds and you can be a completely new person,your improved lifestyle will be reflected by massively improved cardiac biomarkers, but with cancer, the victim often doesnt have that opportunity to take their health into their own hands and have that control over it. Basically cardiac health has huge scope for improvement and is usually caused by lifestyle, cancer its very often dumb luck whether you develop it and also a huge element of luck whether it will be treatable

Some can. There is hereditary atherosclerosis. Example: Arthur Ashe, a top tennis player with an exemplary lifestyle, was lucky not to die from a heart attack in his 30s. His arteries were almost fully blocked. Many people, the first they know they have a heart problem is when they drop dead of a heart attack at a horribly young age. I reckon most people know somebody with a healthy lifestyle who has died of a heart attack or it was picked up and they had surgery. A friend of mine in his 50s - lean guy, ate healthily, exercised. A few drinks his only vice but never big binges - got a medical when changing jobs a few years ago. A heart abnormality was flagged and severe blockages discovered. He was close to having a heart attack. He almost didn’t take the new job. Thank god he did!

It’s thought that 40% of cancers are preventable.

Obvious Desperate Breakfasts · 13-12-2019 4:30pm

Raconteuse wrote: »

That's one of the most frightening aspects - the complete lack of control.

Yeah, when I was diagnosed, that was the hardest thing to cede. And I can see that it terrifies others. They seem relieved to hear that my mother also had breast cancer - they think “Ah, that explains it. I’m okay so” - even though I don’t carry any of the known breast cancer gene mutations and my mother was post-menopausal when diagnosed, so I’m not actually considered to have a strong history.

On feeling in control, I grab it where I can. A family member put up a detailed status update on Facebook about me and my illness without checking first if it was okay with me. It included quite personal stuff. I was mortified. She raked in the likes and comments (100% why she did it) and only hours later texted me “Oh was it okay that I did that? You didn’t like the status update!”. Talk about putting me in an awkward position. Why I was so upset is because the only thing I have control over now is how I talk about my illness. She took that away. The one thing that is mine and that I have a handle on. She knew well she should have asked me first too but was probably hoping I’d say nothing or let it slide out of embarrassment. Which I did for a while.

BDI · 13-12-2019 4:30pm

You have to die of something.

You are but a cluster of cells in a much bigger organism.

You reproduce and you die.

You can’t spend your life worrying about how you go. We have the best pain killing medicine ever and can induce comas if needs be. You will be comfortable however your body chooses to go unless it’s fast. Then it’s fast.

I think the horrible thing about cancers is how long modern science can keep you going for.

Anyway buy yourself a nice coat you seen somebody on Instagram wearing. Be grand.

Obvious Desperate Breakfasts · 13-12-2019 4:34pm

BDI wrote: »

You have to die of something.

You are but a cluster of cells in a much bigger organism.

You reproduce and you die.

You can’t spend your life worrying about how you go. We have the best pain killing medicine ever and can induce comas if needs be. You will be comfortable however your body chooses to go unless it’s fast. Then it’s fast.

I think the horrible thing about cancers is how long modern science can keep you going for.

Anyway buy yourself a nice coat you seen somebody on Instagram wearing. Be grand.

That’s true but don’t ever say that to any young or relatively young person dealing with a terminal illness. It’s of no comfort. I had a hospital consultant breezily say that me. I was 31 and had just seen my life expectancy more than cut in half. I’m still completely shocked at her lack of empathy.

Edit: and sadly, pain can’t always be controlled. That’s why some people are basically killed by morphine because the dosage goes so high trying to kill the pain.

Raconteuse · 13-12-2019 4:36pm

We all know we're gonna die - just not dying old would be sh1t.

Obvious Desperate Breakfasts wrote: »

Yeah, when I was diagnosed, that was the hardest thing to cede. And I can see that it terrifies others. They seem relieved to hear that my mother also had breast cancer - they think “Ah, that explains it. I’m okay so”

They're wrong. Most cancers aren't hereditary.

Unfortunately, it seems that outside of living in Chernobyl, the biggest risk is being alive.

The biggest risk for breast/cervical/ovarian cancers - being female.

SlowBlowin · 13-12-2019 4:43pm

BDI wrote: »

You have to die of something.

You are but a cluster of cells in a much bigger organism.

You reproduce and you die.

You can’t spend your life worrying about how you go. We have the best pain killing medicine ever and can induce comas if needs be. You will be comfortable however your body chooses to go unless it’s fast. Then it’s fast.

I think the horrible thing about cancers is how long modern science can keep you going for.

Anyway buy yourself a nice coat you seen somebody on Instagram wearing. Be grand.

A clinically cruel and over simplified description of life, void of compassion and care, in my opinion.

I sincerely believe if you sat in a chemo ward, with a dying loved one, your opinion would change.

Ande1975 · 13-12-2019 4:48pm

BDI wrote: »

You have to die of something.

You are but a cluster of cells in a much bigger organism.

You reproduce and you die.

You can’t spend your life worrying about how you go. We have the best pain killing medicine ever and can induce comas if needs be. You will be comfortable however your body chooses to go unless it’s fast. Then it’s fast.

I think the horrible thing about cancers is how long modern science can keep you going for.

Anyway buy yourself a nice coat you seen somebody on Instagram wearing. Be grand.

I think this is a horrible post. No clue what its like for people who's lives have been affected by this. Shame on you!

Raconteuse · 13-12-2019 4:55pm

SlowBlowin wrote: »

A clinically cruel and over simplified description of life, void of compassion and care, in my opinion.

I sincerely believe if you sat in a chemo ward, with a dying loved one, your opinion would change.

Ande1975 wrote: »

I think this is a horrible post. No clue what its like for people who's lives have been affected by this. Shame on you!

Not the first person to post it either. I don't get it. I don't think it's meant to upset (although I'm not blaming you for being upset by it) but it's got a cod philosophy thing going on. It's completely useless to a young or relatively young person diagnosed with a serious illness. Yeah we all die but most people die old. If the thread was simply about fear of death in general, not of anything specific, then it would make sense. But it's about cancer - and the importance of awareness to catch it early, not shrug and go "oh well, we all gotta go some time."

Obvious Desperate Breakfasts · 13-12-2019 5:09pm

Raconteuse wrote: »

Not the first person to post it either. I don't get it. I don't think it's meant to upset (although I'm not blaming you for being upset by it) but it's got a cod philosophy thing going on. It's completely useless to a young or relatively young person diagnosed with a serious illness. Yeah we all die but most people die old. If the thread was simply about fear of death in general, not of anything specific, then it would make sense. But it's about cancer - and the importance of awareness to catch it early, not shrug and go "oh well, we all gotta go some time."

Yup. “Sure I could get hit by a bus tomorrow!” was what the consultant said to me. Ah, Doc? That’s highly unlikely whereas I am almost 100% certainly going to die from this disease, not something else. And way before my time too.

The worst are those who seem to think saying “We all die sometime” is really profound and deep. No, it’s trite. You haven’t elucidated the meaning of life there. All you’ve done is dismiss and diminish somebody’s fears and pain.

Raconteuse · 13-12-2019 5:22pm

You'd have more chance of getting cancer than being hit by a bus.

Hate that expression ("you could get hit by a bus tomorrow" - no you couldn't tbh).

wakka12 · 13-12-2019 5:23pm

BDI wrote: »

You have to die of something.

You are but a cluster of cells in a much bigger organism.

You reproduce and you die.

You can’t spend your life worrying about how you go. We have the best pain killing medicine ever and can induce comas if needs be. You will be comfortable however your body chooses to go unless it’s fast. Then it’s fast.

I think the horrible thing about cancers is how long modern science can keep you going for.

Anyway buy yourself a nice coat you seen somebody on Instagram wearing. Be grand.

Would you say this to your mum or dad or brother or sister if they were diagnosed with a terminal illness in their 40's or younger? Would you say this to your child who was going to die of leukemia before they even made it to secondary school? Do you think its comforting or reassuring at all to hear this?

mariaalice · 13-12-2019 7:00pm

It probably is something to do with the 24-hour news cycle and more awareness.

Also years ago there was much more social pressures to be private about illness. I read an article about an elderly woman who died her husband was dead the undertake preparing the body aske about her mastectomy as she was being dressed to be put in the coffin her children never knew she had a mastectomy.

Another thing people forget about is the side effect of treatment my brother in law had cancer about 14 years ago and is cured but has had horrific side effect from the treatment to the point where he can't work and is a shell of his former self but still the cancer is cured.

13-12-2019 7:11pm

Obvious Desperate Breakfasts wrote: »

Yup. “Sure I could get hit by a bus tomorrow!” was what the consultant said to me. Ah, Doc? That’s highly unlikely whereas I am almost 100% certainly going to die from this disease, not something else. And way before my time too.

The worst are those who seem to think saying “We all die sometime” is really profound and deep. No, it’s trite. You haven’t elucidated the meaning of life there. All you’ve done is dismiss and diminish somebody’s fears and pain.

It's a selfish kind of post. Look at the posts themselves. They're talking about the individual, the poster, with the disease, not watching others struggle through their own experiences.

Due to my shaking disorder, I have a very high chance at Alzheimer's, and Parkinsons disease. It also runs in my family on both sides. I decided a long time ago, after watching relations degenerate due to their condition and "treatments", that I'd "manage" it for a while and then kill myself. As such, two/almost three decades later, I've become rather fatalistic about getting diseases like Cancer. If it happens, it happens. I still do my checkups, but I'm not going to worry about it much, if at all (did all my worrying years ago). Too many people I know who lead healthier lives than me, have gotten something nasty. Such diseases are a Russian roulette.

I've watched close family relations waste away from Alzheimer's, Parkinsons, and yes, various types of Cancer. Seen them change from the vibrant people they were, to a wasted shell, sometimes retaining a spark of their individuality, but more often than not, nothing of themselves remained.

My attitude towards my getting a disease, and how I approach it, does not translate to other people. I might say, as the other posters, that I don't care (which I do, since I rather love living), but I will be supportive to anyone who has to suffer such an experience. It's up to them how they, themselves, see their situation.

lozenges · 13-12-2019 7:13pm

_Brian wrote: »

You do from those of us with cardiac issues and a family history

Sorry to hear that! I meant on a population level - of course individuals or families who know they're high risk are aware of it, but on a population level there doesn't seem to be the same fear of cardiac issues that cancer provokes in people, despite it being responsible for more mortality.

Of course increased awareness is beneficial, but I also think for some people it's counterproductive - they might have symptoms but are so terrified of being diagnosed that they go into denial and refuse to see a Dr/get investigated. I can think of one elderly relative in particular for whom this was the case.

A reasonable proportion of cancers are entirely curable, depending on how early they're caught. Unfortunately some are very silent/asymptomatic until a late stage, like ovarian cancer, and so are much more difficult to treat successfully.

BDI · 13-12-2019 7:19pm

SlowBlowin wrote: »

A clinically cruel and over simplified description of life, void of compassion and care, in my opinion.

I sincerely believe if you sat in a chemo ward, with a dying loved one, your opinion would change.

I have and I would have felt equally as bad if they had any other ailment. Motor neuron disease, now that one was rough.

Do we scaremonger when it comes to cancer?

Comments