what to believe?

Hi there,

Since I’ve been diagnosed I’ve been reading everything I can get my hands on about cancer and now I have become a little bit anxious as I really don’t know what to believe.

One book says you should follow a certain diet, another book tells you that positive thinking can help you overcome even stage IV cancer and then someone gives me a “cure for cancer” of an aloe vera, honey and brandy mixture. Someone else tells me of a place in mexico where a woman she knew with stage IV was cured and soemone gives me a number of a faith healer. And then you read all the time about the pharmaceutical companies not wanting to cure cancer as they would lose money.

I really don’t know what to believe especially when you read that conventional treatments like chemo only give you an extra 3% increase in survival. Can anybody shed some light on this. On the one hand I want to do everything to improve my chances of beating this cancer and on the other I am well aware that cancer is an industry that alot of people are making money out of.

I’d really appreciate people’s opinions on this.

Thank you,

Smythie

Just to add, I fully intend to go down the conventional route with treatment.

Hi Smythie,
I was diagnosed on the 15th August and I can honestly say i think i have read every conceivable book, article , magazine going, from the conventional to the damn write hocus pocus and only now feel that I have come to some kind of terms with this disease. I have started to listen to what my head is telling me, I have started to trust more in the team who are looking after me and I think I have stopped trying to desperately search for an article or book or anything that will take this disease away. The 2 books i did find truly helpful are The choice written by Bernadette Bohan and Cancer is a word not a sentence (sorry forget authors name) They are both informative and inspiring. The only thing i would say is stay clear of surfing the net to much I find it just terrified me and a lot of the info is out of date or very American based in its approach. Searching for answers is very normal and a part of this process. Stay strong and good luck. I have an family friend who has had cancer was told a poor prognosis and had it in extensive lymph nodes, only had rads as chemo not available then, no scans of drug therapy after and is alive 30 yrs + diagnosis maybe we all know and read to much now.
Good luck

C

Hi zjlove,

Thanks so much for reply.

I too have read The Choice and thought her advice on using chemical-free beauty products, clean water and eating lots of raw foods and juicing worthwhile advice but common sense as well in parts. I have always believe in keeping things as close to nature as possible, less man-made and more organic and natural. But I wasn’t sure about taking wheatgrass and the other supplements she suggested like udo’s oil etc as I do not think it is good to take supplements. Found her advice about not heating oils made alot of sense.

I haven’t read Cancer is a word not a sentence yet but have seen it in the book shops.

I guess I’m at the stage where I want to seek out an answer and should like you should place more trust in my medical team. Great to hear about your family friend. It’s good to hear things like that.

Anyone else got words of wisdom or opinions? I’m really interested to hear what people think.

Thanks,
Smythie

I can’t believe that “positive thinking” can really significantly affect survival. Those cancer cells don’t know anything about how you are feeling. Some depressed pessimists live for a long time and eventually die of something else entirely. Others who are determined to live, die tragically young. The reason why people recommend positice thinking is because it makes you an easier person to deal with. If you are struggling to appear cheerful and positive, you need no support?

You need to hold yourself together in order to have a good quality of life, to get through any treatments you need and to rationally deal with suggestions of quack cancer treatments. If you feel low, seek help and don’t pretend to be OK. Ask questions rather than worry on your own. There are few silly questions.

I hope you never progress to Stage IV. Few people with Stage IV cancer will be “cured”. It is universally agreed that Stage IV (the UK definition) is a stage that will almost certainly result in death. Those at Stage IV just hope to beat typical life expectancy and to be kept fairly free of symptoms.

These so called “cures” are always to be found in countries with less regulation than ours. It is illegal for anyone offering alternative / complementary therapies or food supplements etc. to claim they can cure anyone of cancer. There is a very expensive honey, originating from Isael, which is recommended to cancer sufferers. None of the UK distributors make illegal claims for the honey, but they provide hyperlinks to “research” that suggests it will be beneficial to cancer patients. I think this is treading a very fine line.

Do you really expect a poor country like Mexico to come up with a cancer treatment that is more effective than anything in the developed world? It is a clever marketing ploy for a product they produce in abundance (Mexican Honey) and for which they probably get a modest price. But if they demand increases as it did for that Israeli stuff…

Yes, you will come across lots of diet advice including the Flaxseed and Quark diet, Jane Plant’s diet, Issiac tea etc. There is little scientific evidence for any of this. Most of us are totally bored of discussing Jane Plant so suggest you put her name into the search engine and read all the previous threads.

Glad you are pursuing the conventional treatment route.

Holey

Thanks Holeybones,

It makes alot of sense what you say. I really hate how this disease has made me feel quite vulnerable.

With regards to diets, my mum always says a little bit of everything is good for you.What you say as regards honey, positive thinking etc makes sense really. Read Jane Plant’s diet, wouldn’t follow it myself anyway as I don’t like chinese food anyway. If I remember right she followsa chinese like diet.

It wasn’t honey in Mexico but an alternative treatment centre that was suggested to me. As far as i know, costs thousands to go there anyway so I’m sceptical.

Thanks for reply.

Smythie

I guess, almost 5 yrs out from dx, I can step back a little and put the alternative cancer treatments in some kind of perspective. I did go the conventional route - WLE, total axillary removal, chemo, rads and now Arimidex, but also wanted to research what else may be available. I did have complementary treatments ( as opposed to alternative diet therapies) like Reikki, aromotherapy and even acupuncture. These treatments did a lot for my sense of well being, but I was never under any illusion they could cure cancer or even bring it into remission. It was just a positive way for me to handle the conventional treatments and I found I became much calmer and able to cope.

I would beware of taking any supplements, if you are going to have chemo, before discussing them with your Oncologist. And as for Mexico and the dreaded Gerson diet, don’t even think about it. I have a friend in Florida whose husband had stage IV lung cancer and as they were desperate, they flew to San Diego, then Mexico for this appalling treatment. Her husband was so sick he had to be removed from the clinic into a hospital back in San Diego to get him stabilised and then a private plane with a doctor and nurse, back to Florida. He died some 4 weeks later. Who knows, perhaps he would have had a longer life without trying the Gerson diet?

Have you read the late John Diamond’s book: “Snake Oil and Other Preoccupations”? He had cancer of the tongue and throat and looked at many alternative treatments. It was quite an eye opener for me, and thereafter, I didn’t even look at alternative therapy.

I am sure there are many people with cancer who are desperate, and if alternative therapy is what makes them have hope, far be it from me to dispell that notion. I do believe that Caron Keating, when diagnosed with secondaries, refused allopathic treatment and went on a worldwide search for alternative treatment, even as far as living in Australia near an alternative medical centre. I don’t know the specifics of her breast cancer and whether she was stage IV with secondaries and would not have lived in any event, but I sure would not spend thousands of pounds on alternative, scientifically unproven treatments, when we can have the best of modern medicine to help keep us in remission.

Just my opinion… I am sure others on this site have different ones.

Take care,
Liz.

Hi Liz,

Thanks for giving me your opinion.

I had quite forgotten but I read John Diamond’s book when a loved one had cancer a few years ago. It was an eye opener in regards to alternative treatments, probably need to re-read that. Although for some reason, i remember never wanting to read it again and took it to the secondhand shop.

Your suggestion of complementary therapies sound like a good way to cope with my impending treatment.

Had read about caron keating on an old thread here. I really think she made some bad decisions as reagrds her treatment. Poor thing. Sounds like the Gerson diet is a big no no.

Thanks again,
Smythie

Hi Smythie

Pleased to put some kind of logical sense on this alternative treatment scenario, although I do respect the opinions of others who feel entirely different. Horses for courses!

My ultimate inspiration is a male friend, now 79 yrs old, who got stage IV lung cancer 7 yrs ago. He had his right lung removed…the cancer metastasised to his left kidney and he had that removed. I went over to Florida to help his wife out, physically and emotionally. I was aghast at his physical condition, he was so weak he could not even brush his own teeth - we had 4 hours to get him out of the Moffit Cancer Hospital in Tampa and into a rehab place. As I wheeled him down to his room his wife had to see the Administrator of the rehab facility, the first question she was asked was: “Which funeral home have you made arrangements with?”. In the vernacular, I was gobsmacked.

Well, he got well and has been twice to Cornwall to visit us, and has done a 2 month vacation in Spain, where we first met, all newly retired. He now has a tumour on his remaining lung, but is going to have stereotactic radiation in the next month. This treatment was first done in Japan 5 yrs ago, and some 2 yrs ago at the Moffit Cancer Hospital, with great success. He is treated at one of the best 5 cancer hospitals in the US, and I am in awe of his many doctors. He is feeling well, doing some “yard” work at their home, and although needs a nap in the afternoons, is doing great.

I have many complications with Crohn’s (some 37 rs) and can sometimes despair that I will live through another severe rectal haemorrhage, hospitalisation for blood transfusions and IV steroids, but I am still positive, because I so want to live. I just have to trust my gastroenteroligist. Like Holeybones so succinctly says, positivity is not a solution to a cure, but it does help me live my life day by day. Every morning I wake up, I am thankful I am still here, not in pain or discomfort, and living a good retired life.

It was interesting to learn you got rid of John Diamond’s book - I had also bought his first book C is for Cowards?, and must have thrown both of them in the recycling bin. It was such a desperate book, with no hope.

I have recently bought Musa Meyer’s book “After breast cancer”, but must admit I haven’t even opened it. Not ready to go there yet.

You have a very positive and indeed intelligent sceptical attitude to your forthcoming treatment - go for it!
I have no misgivings whatsoever as to choosing chemo, when the stats my Oncologist gave me were only 8% better with chemo, which was a big decision to make as I had to come off my normal chemo for Crohn’s. That dreadful time of living on Fortijuice for 4 months is now just a distant memory. I am doing well, both with bc and Crohn’s as I am back on weekly chemo for the latter.

Take care,
Liz.

Hi Liz,

Yeah had Diamond’s other book too and I think that was what it was about his book; the tone, desperation or lack of hope as you say.

I am so glad you are doing well but it sounds tough that you have Crohn’s disease as well. I do not know much about Crohn’s but know it can be unpleasant. I did not realise that one has to undergo chemo for Crohn’s too.I really hope it all goes well for you. Your friend sounds like an inspiration and so do you, you know! His treatment in one of the five top cancer hospitals brings to mind Lance Armstrong’s book. I thought after reading it that his recovery owed alot to the fact that he got the best treatment possible from the best doctors etc in the world and maybe because of who he was and the money he had etc. I want to get the best treatment possible too but do not have the money etc to go to the doctors. Am I making sense here? I want to give myself the best chance of recovery.

Anyways, i think zjlove is right about not surfing the web about cancer that has lead to anxiety.

Thank you for your advice Liz. It is so good to hear from someone who is 5yrs down the line and still doing good. Take care of yourself.

Best wishes,
Smythie

John Diamond is one of my few ‘cancer heros.’ I think his books are witty and intelligent…perhaps a trifle too realistic for thsoe who like their cancer smelling of roses. But I think Diamond’s magnificnet writing is done a disservice if we refer to it as desperate or lacking in hope. His essay in Snake Oil, called Reasons to be Cheerful, is one of the most moving pieces on the wonderfulness of life that I have ever read.

Smythie…there’s a whole industry of alternative and complementary medicne out there, some of it worthy, much of it in my view very harmful and misleading. Basically any ‘alternative’ which promises a cancer cure is wrong…there are no known cures. Conventional tretaments may indeed for some cancer patients only improve overall survival or disease free survival a little bit, but some improve them quite a lot.

I think one of the reasons for the popularity of alternative treatments is that practitioners tend to adopt a holistic approach to treating people…they take account fo their psycgholgical, spiritual, emotional needs as well as their pyscical and medical needs. Unfortunately conventional (alllopathic) medicine in the west has until very recently ignored this ‘whole person’…

The question I always ask about any alternative tretament is: 'What is the evidence? Evidence as far as I am concerned comes from the mainstream scientific approach which involves double blind randomised trials…not anecdote.

Some complementary therapies can be useful in helping you manage the emotionl impact of cancer or perhaps even to manage side effects. I get free aromthatherapy at a local cancer centre because massage relaxes me. I smile and nod for 10 minutes at the start of each session, as the aromatherpiast seriously quizes me on my mood to determine which oils are right for today. I also do a lot of counselling…I’m a person of words so talking helps me. But funny diets, swinging crystals, distance healing, secret pills with natural ingredients…don’t get me on these or my blood pressure will rise.

Nothing wrong with reading…I have a cancer library now…John Diamond among my favourites, also Ruth Picardie, Adam Wishart, Susan Love, Musa Meyer and Jane Tomlinson is worth a read too.

As for postive thinking…well I read a very funny article in the Evening Standard last week. Apparently pessimism is the new thing with the publication of a new self help book called Stop Smiling, Start Kvetching: A Five Step Guide to Creative Complaining. The author says: ‘Insisting that one should smile and look on the bright side makes people feel really miserable…What makes people happy is to share their negativity with an empathetic audience…’ Well she was talking about Christmas but I reckon the same can be applied to cancer.

Jane

Hi all,

I have to confess to avoiding books written by people diagnosed with cancer. Their experiences and reactions to the disease often seems so very different from my own that their stories are not very helpful. I think it is probably because their main audience is not me but people without cancer.

I’ve travelled a long way not only physically but emotionally in the last four and three-quarter years. I’ve moved from thinking when I was first diagnosed:“why me?” to thinking more on the lines of: “why not me?”. I’ve learned to take risks again, something, I think, that is very important to a full and happy life.

So, what sort of things do I find helpful? Well, odd things such as this old newspaper cutting quoted on Radio Four’s News Quiz which displays humour even in the face of the chaotic and unfair nature of the world in which we live.

“Edwina Mackenzie - now 96 - credits her long life to having decided, 68 years ago, to get off the Titanic”.

(Mrs Mackenzie, one of the Titanic’s survivors, carried on being lucky; she lived to be a hundred.)

Best wishes,

Sue

Hi All,
Interesting thread. I would also recommend ‘Cancer is a word not a sentence’, which has an excellent chapter covering the issues of complementary therapies/healing remedies. It’s also an excellent book all round at explaining different types of cancer, and how the different treatments work, and why your onc makes certain decisions about your treatment. I got it out of the library (did you know if you request a book they don’t have they will usually buy a copy?).
What is the name of the John Diamond book you’ve recommended please?
I’ve finally got around to starting Jane Tomlinson’s book ‘you can’t take it with you’ - very readable so far.
It’s such a natural thing to think if you search hard enough you will be able to find a miracle cure. I’m sure the drug industry is huge and powerful, and to some extent has its own agenda, but basically they are working flat out to find a cure, as that will make them the most money!
All the best
Jacquie

Yes, very interesting thread. I guess we all went through a “research phase”, simply because we needed to learn more about what we have. Positivity is certainly not a cure - but as Liz points out, it helps a lot in keeping a good quality of life while we are treated. Also, if stress can be surmised to be a factor in some cancers, a serene approach may facilitate treatment: being serene and positive will help sleeping and eating well, keeping a social life, and all this in turn will help making us stronger through treatment (chemo, rads, whatever). I don’t think this aspect is to be forgotten.

I am not a believer of alternative medecines. I can drink a chamomile, but will not limit my options: chemo as well as rads has been used for years, and the results have been measured over decades. Today they are better controlled: I am not sure in another 20 years they will still be popular (I hope that by then, other treatments and prevention will have come into play), but for now I could not imagine to refuse them. They are expensive, and definitely drugs companies are making their bread and butter on that, but part of that money is also financing further research… the goal is, as Jacquie says smartly, to keep making money, and the best treatments will get the best return.

My mom, who got BC at 34 (that was 35 yrs ago), got radical surgery (mastectomy), chemo, rads, and androgens hormons to block her natural oestrogens. She survives still today, and is in good shape. I believe that the treatment she got made the difference - even if at the time it was terribly handicapping and debilitating, and until today she is happy she had the strength to go through with it. :slight_smile:

Liz, I was interesting in reading about your Chron’s… I have it too… when it rains, it pours huh. Lucky for me, currently it is dormant… so I was able to go through with Chemo and finish it. I have to say that comparing with Chron’s, chemo was “a walk in the park”…

The two books I like of John Diamond are:

Snake Poison (about alternative medicine…he died before the book was completed and the book also contains many of his wonderful essays)

C: Cause Cowards get Cancer too (an account of his experience of throat cancer…initially diagnosed with a good prognosis…the book follows his Times columns where he wrote regularly about his cancer.)

John Diamond was married to Nigella Lawson and they had two children together…who were still very young when he died.

Jane

So interesting reading this thread, and I agree with so much with what is written above. Some of you know that I worked some years back with ladies who had been diagnosed with breast cancer and later had lymphoedema. Some just went with the conventional treatments, some with the conventional treatments and also the support and comfort that they gained from a variety of complementary therapies. I think that’s the key here, if you find benefit from aromatherapy, reflexology, etc etc and they do no harm, then that’s fine. The most desparately sad situations were the very few ladies who had decided to reject what was recommended in terms of surgery or chemotherapy and were paying thousands of pounds for “cures or potions”, or following dreadfully restrictive diets that promised them cures from cancer. It was horrible to see the outcome, and such an unnecessary tragedy.

I think we have to realise that if any one of these wonderful cures really was so wonderful then it would be quickly researched and provided for us! I know of course that the pharmaceutical industry is a big money area, but all the doctors and scientists who give their lives to researching and treating cancer really are doing it because they want to understand it, and they want to help us get better, or at least to live as healthily and long as we can. Reading articles that try to pitch us, the vulnerable patients, against them, the wicked medical profession, really make me mad. We are all on the same side, they are there to help us.

As for postitive thinking, the research I have come across has been that the bottom line is that it cannot be proven to affect the final outcome, but it does improve the quality of life as we go along. Must say I’m with this - don’t know how long I’ll live, but I intend to live well, to live happily and to enjoy every day, for all the challenges that are coming my way at the moment! Good luck to you all. Look forward to reading more comments on this thread. Love Sarah

I agree 100% with what you’ve said Sarah and couldn’t have put it better myself! Especially your last paragraph - quality of life is so important and while I’m feeling relatively well I also intend to enjoy every day regardless of my prognosis (which is easy to say when you’re not feeling ill having been in both camps with secondaries).

Pinkdove

Re alternative therapies and being positive - There was an interesting item in the November 30th episode of ‘Science in Action’ (BBC World Service) on meditation, it was the last five and a half minutes of the programme. The research had done MRI scans on the brains of those that meditate (some such as monks and lesser mortals too) and it showed that there were noticeable changes in the brains of those who meditated a lot. The research did show a mood enhancing effect and a stronger immune system (is there a link?) and this interested me. The research also showed that meditation is good for psychopaths! That aside, we must always be careful not to throw the baby out with the bathwater and all that.

Here is the link if interested:
downloads.bbc.co.uk/podcasts/worldservice/scia/rss.xml

blondie

Hi all - yes, chemo is now being prescribed for Crohn’s. I was so sick of the merry go round of steroids - moonface, fat pad on the neck, going up 2-3 sizes in clothes that I decided to do some research on the internet 7 yrs ago, when we first got a computer. I found that methotrexate was being used in the US for Crohn’s, and although not without significant life threatening side effects (it affects the bone marrow production of red cells particularly) and can be toxic to the liver. My then gastro - thank God now gone off to academia in Oxford, seemed personally affronted that I had found another medication as an alternative to steroids. He said it was not licensed in England for Crohn’s, but was for cancer, rheumatoid arthritis and psoriasis because the mnfrs felt there were too few patients with Crohn’s to justify the expense of the licensing procedure.

I did get him to prescribe it eventually - well, when I was in sales a newspaper article on me said I could sell ice cream to eskimos! The problem was that the gastro was not aware that mtx must be accompanied by folic acid, and I got quite ill with macrobiotic red cells. A young GP I had at the time, who also had Crohn’s, prescribed the folic acid for me, and referred me to a new, youngish gastro at my hospital. He has been brilliant, although of no use when I got bc and had to stop the mtx for FEC chemo. His opinion was that bc is life threatening, and Crohn’s is not.

I am still doing well on mtx - gastro says he has never heard of anyone tolerating mtx for 7 years, but I never “present” normally. He has changed the oral tablets to self injection weekly and I have not had a single rectal haemorrhage. I do have to have monthly comprehensive blood tests, but aside from my red cells being out of range, everything else is okay.

The one thing neither my Oncologist nor Gastro can explain is: mtx was one of the old bc chemo drugs, so how come, since I was taking it for 2-3 yrs before bc dx, I still got bc? Even on my medhelp Crohn’s forum, I haven’t found anyone on mtx, and certainly not with bc. One of the side effects is lymphoma which can a tad scary.
My gastro did ask (as have all my previous ones) if there is any Jewish blood in my family. I don’t know, but suspect my maternal grandfather was. Apparently both Crohn’s and bc is prevalent in the Ashkenazi Jewish population of Eastern Europe and of course, during the pogroms a large percentage of the population emigrated to western Europe and the US.
A lot of research has been going on recently into the genetic probability of Crohn’s and at least one, NOD2 has been identified as a precursor to Crohn’s.

Just my bad luck to get both Crohn’s and bc - my GP said I was dealt a bad hand of cards when I was born. My response was, well there are far worse genetic diseases than mine.

Sorry for boring you - Crohn’s is so little understood by the general population and almost impossible to talk about. When friends ask how you are, it is difficult to say: “well, I have to go to the lavatory at least 6 times in the morning, have to carry clean underwear if I go out,need to know where every public toilet is and spend a fortune on cotton knickers, so I can boil them!”. So, I don’t even go there - just smile and saying I am doing fine thank you.

Thanks to everyone on this site for being so welcoming and informative.

Liz.

Ah! methotrexate, that takes me back. It did make me smile when you said methotrexate ‘was one of the old bc chemo drugs’ as I was on methotrexate, 5fu and something else I can’t remember the name of. When my cancer recurred in 2003, I was told by the nurses that my experiences of bc first time round had been ‘in the dark ages’ - I was first diagnosed in 1994, hardly that long ago but it just goes to show how fast things have been moving on the bc front (I know that some breast cancers have had more research development than others) and it was good to be reminded as I did get a bit despondent when I saw the reports on the forum that Avastin may not be the wonder drug I was hoping to have in my armory for later.

Blondie