Choosing Non-Conventional Treatment

kmakm

I heard this segment from Professor Christobel Saunders on the Health Report today. It's about the increasing numbers, approximately 5%, of people with curable cancers who refuse conventional treatment. Professor Saunders is a breast cancer expert but it's across all cancers. I found it interesting. Seven minutes, worth a listen if you're curious!  K xox

http://www.abc.net.au/radionational/programs/healthreport/people-with-curable-cancer-who-refuse-treatment/10405038

Afraser

I am glad Norman Swan raised the fear that cancer patients are just the unwilling and unwitting victims of greedy pharmaceutical companies. I've heard that one a few times. Not only would we all be using the "cure" if there was one, we would be turning our back on difficult and potentially damaging treatment if we stood as good a chance of survival by doing nothing. But it's a worry that younger, well educated people are prominent in the rejecting treatment lists. I am all for youthful optimism, but......
So the standard refrains continue: get a medical team you trust; commit to the treatment; stay away from Dr Google; miracles may happen but are statistically a poor option. I marked 6 years since diagnosis yesterday . Don't think I would have made that if I had done nothing. 

kmakm

I agree @AFraser. Possibly a connection to the fraudster who started the anti-vaccination crisis with his bogus study, a crossover in those populations maybe. You summed it up very well. K xox

Sister

I am so tired of those fb posts that get shared - the ones that tell you how bad it is to have a mammogram and that if you just ate enough of this or washed yourself in that, you could cure breast cancer.  And you're right, @kmakm - they come from the anti-vaxxer mob.  Unfortunately there's an awful lot of them is these hills.

Zoffiel

Cannabis. All my old stoner mates relentlessly circulate rubbish about pot curing everything. Everything. The irony is that if that was true, none of us would be cancer ridden, anxious, constipated, suffering from diabetes...ad infinitum. 

The conspiracy theory shit does my head in. Every year I see applications for significant funding where researchers are looking for novel therapies. Yes, Big Pharma is profit driven, but if there was a simple solution there are enough ethical scientists out there that it would be common practice.

Nadi

I am conflicted over this whole issue. Not for one second did I consider not having surgery, chemo, radiation and herceptin when I was diagnosed with Stage 2 HER+  Breast cancer. I researched the outcomes of treatment vs non treatment and the data was clear - treatment saved more lives when it came to my type and grade of breast cancer. I made an informed choice and trusted my doctors when my life was in the balance and I will NEVER regret this. 

But since my own health concerns a few things have happened with my family which have seriously damaged my trust in medical professionals for other conditions. My mother has developed pulmonary fibrosis, a life limiting disease, after being prescribed an arthritis medication for far too long than she should have. My dad was given anti psychotics to control his behaviour from dementia because it's an easier fix and helps the nursing home staff. As a result he has had several TIAs (mini strokes) and falls which are known side effects of this medication and he's a walking zombie. This week there was a change in his specialist geriatrician who told me he couldn't believe my dad was kept on this medication for so long and immediately took him off it to stop further physical decline.

As a result of these experiences, I developed a mistrust with some doctors. I had been battling my 21 yr old son's specialist for over a year after she prescribed him chemo drugs given to leukemia patients for his severe eczema!!! When he was under 18 I wouldn't allow it, I was convinced I was doing what was best for my son. We tried every other treatment available including light therapy, then painful injections 140-150 PER SESSION to no effect. I asked for second and third opinions. After one and a half years of discomfit, my son told me he was willing to take the risk to his long term health by taking the drugs as his condition was severely impacting his quality of life. He commenced these chemo drugs when I was overseas because he knew I wasn't there to talk him out of it. I was devastated, and convinced he was making the wrong choice. And in the end I was totally WRONG about this. His life has improved so so so much. He is living without infection and pain again. His scars are healing. And yes there are still long term health risks because he has to be on these drugs for 20 years, but he says it's worth the risk to have his life back now. I thought I was doing the right thing, but in the end my mistrust of doctors only caused him pain for a year longer than necessary.  So my trust in the medical professionals was restored a little. Insert  mother guilt right here.

Now on Friday my 19 yr old son was given tricyclic anti depressants for excessive sweating. He's only 19, he has NO depression or anxiety. The drug has a known side effect of stopping sweating. My concern is his brain is still growing and yet this is what the doctor prescribed as the 'first' thing he should try. My son didn't ask any questions about other effects this drug would have on him.

Despite my concerns and pleas for him to research this medication and at least get second and third opinion, my 19 yr old would happily take whatever the doctors gives him no questions asked. He believes the doctors are trained and never make mistakes because of the fear they would be sued.  I know my boys are adults and can make them own decisions, but I can't forget that sometimes having blind trust in medical professionals can have health implications just as much as not taking advice from a trusted medical professional can have an adverse outcome.

I guess what I am saying is that I understand people being afraid of doctors being persuaded by big pharma. I understand how people's individual experiences can lead to mistrust. I have been right and I have been wrong and hindsight is a wonderful thing.

The best thing we can do, is to ask questions of our doctors, and be informed. And I don't mean informed only be reading anecdotal negative facebook posts, but by reading a variety of reputable sources and getting second opinions if there is any doubt. In the end people have to be comfortable with the decisions they make about treatment. 

Afraser

Understandable concerns. I had to get my elderly mother weaned off opioids as she too was heading for zombieville. Yes, she had chronic pain and no possible fix, so pain relief was necessary but well intentioned doctors had upped the dose without thinking that an 88 year old might prefer to be compus mentis! I also
understand that others might have taken a different view, doesn't matter if Mum falls asleep all the time as long as she is not in pain. Blind trust is rarely a good idea, but trust when you get good, informed and honest answers to questions is justified. It was another doctor who spotted my mother's real problem. 

Blossom1961

I would have preferred to do natural therapies but everything I looked at said there was no medical research done even though there was numerous life stories of success. I would love for the medical association to put more research into this area rather than just name it alternate and unknown. I accepted the chemo track but six months down and now with reduced heart function I sometimes question my decision and I still have my mastectomy and nine months herceptin to go. It would be nice to have medically tested choices. Not all naturally based therapy is unsound.

kmakm

You might like to read this thread and listen to the radio story (though not specifically on AIs) @Clairebear56. K xox

Clairebear56

Thanks. I've read that now, but as with Nadi, it would never have occurred to me to not have the surgery and radiotherapy. So I'm not someone who just refuses all treatment, I'm just trying to find a balance between quality of life and quantity of life I guess. Thanks for the heads up about this thread though.

kmakm

It's such a balancing act eh? With the end result unknowable. BC sure schools us hard in the fragility and the uncertainties of life. K xox

Emim

That is an interesting segment. I have been doing a bit of reading about this found this article explaining that there has been limited research in this area, largely because it is difficult to properly study people who have refused some or all conventional treatment. However, they have done some analysis and found much greater risk of death, particularly from breast cancer, if conventional treatments are not followed. I think this may be the article the oncologist refers to in the segment. I have just finished chemo, and have radiation and herceptin to go. While it hasn't been a walk in the park, my prognosis would not have been good if I had not chosen conventional treatment. I had an aggressive grade three triple positive tumour and my life is the most important thing I have.

https://academic.oup.com/jnci/article/110/1/121/4064136

This is a good summary of the article:

https://yaledailynews.com/blog/2017/09/05/study-problematizes-alternative-cancer-treatments/

poodlejules

Good luck @ Nadi sounds like you' ve got a lot on your plate but also sounds like you're working through it. x