People, be careful with what you read! I

People, please be very careful with the advice others are giving you. Some of the things I have been reading lately on here and some of the other forums is filling me with disbelief. What works or is prescribed for one person will not be suitable for everyone. I am saying this as a medical professional and as someone with stage 4 lung cancer. I know it is meant well but should not always be taken as gospel.

The oncologists are the cancer experts and look at each person as an individual. All of our cancers are different. Different stages, different level of spread and different driving forces (genetics) etc . Just because a treatment works for one person does not mean it will work for everyone due to these factors.

I agree that some oncologists are better than others and if you are not happy get a second opinion from a major cancer centre but unless you are a medical professional who has access to someones medical notes and know their stage, type and intricate details of their cancer you cannot tell them what will work for them. There is alot that go's on behind the scene so to speak into putting a treatment plan together and it is usually not just down to one person but a multi discpilinary team of people. Even then it depends on other factors: the persons medical history, how well they are, other illnesses etc.

People have been mentioning Cyberknife as the thing you should ask for. Cyberknife is a wonderful treatment and many NHS trusts here in the UK will refer patients to other centers for this IF it is the best treatment for that person. It is fantastic for early stage tumours or secondary tumours but it is a targeted form of radiotherapy and if there is a chance that the tumour has put down seedlings (as it was in my case) it will NOT cure the cancer. Yes it will treat the main tumour but the seedlings will be left to grow! Seedlings cannot be seen on scans and if left will just spread the cancer throughout the body. Mine were only seen when they opened me up. So the best treatment for me was something that will catch ALL of the cancer. I tested positive for the EGFR mutation and therefor my treatment is IRESSA. I have now been on it for 16 months and it is working very well, main tumour has collapsed and is immeasurable.

Also be careful with the dietary advice especially if you are taking one of the targeted therapies like Iressa or Tarceva. Some food stuffs interfere with the absorption of the drug. Graprefruit and garlic capsules are 2 of them a are certain indigestion remedies. There is NO evidance to say that juicing is good for you. What is wrong with just eating fruit and veg? There is evidence to say vitamin C will help so drink orange juice and eat vitamin rich food stuffs! The main thing we can do to help ourselves is by keeping our immune system healthy. You can do this by eating a well balanced diet! There is NO evidence that sugar feeds cancer! Ive attached a link from cancer grace: cancergrace.org/cancer-101/.... There is no need to become a vegan! I eat a well balanced diet have chocolate and cake when I fancy it and alcohol when I want to. I keep myself fit and and living a great life!

Good luck, do what is best for you but be sensible about it.

[Billculbard]

Hi Lyn.

Good comments from someone who knows both sides of the story!

EMMA or LORRAINE - maybe you could contact subscribers (by email) if we are treading a path which could give people UNSAFE advice? I think we'd all like to be pointed in the right direction if we stray. I certainly would.

Bill

[EmmaG]

Hi both, our general rule is that advice given on this forum should not replace that given by medical professionals. We try to moderate with a light touch at the moment but I'll speak to Lorraine and see if we want to review this. I think the best rule for our bloggers is to speak about your own personal experience, as you both already do & always advise the other forum users to speak to their healthcare professionals about any concerns they have. Thanks for raising the issue though. Emma PS: Are you both coming to the patient conference?

[Georgie1]

Hi EmmaG,

I am one of the people who has received some of this advice. However, I have to agree with all what you have said! I am and was before I found out about the Cancer changing my life style of eating, I have also had 3 lumber operations in the last 12 years and a Thyroid op. And been on a lot of strong medication. Still am! So I thought it was time to eat more heathly. And it's working I have lost 7kilos in the last few months. The trouble is we get told this awful news and will try anything if we think it will help.

[Hidden in reply to Georgie1]

Hi Georgie1,

its not the dietary advice thing that worries me, that is just a matter of common sense. I do think its right to let people know that they don't have to give up their favourite foods if they don't want to though, personnaly, I've always eaten healthily, never smoked and kept active so there's not much I could really change. To be honest some of the recommendations people have suggested like 'adopting a vegan diet' just isn't healthy as you would be deprived of some essential nutrients needed to maintain the immune system. Its just not necessary. All food does is provide for us to maintain a healthy state and this is what you need to fight. But that includes all essential nutrients; protein, carbs, dairy and fruit and veg. If there is research and evidence to say things works that one thing but some of the suggestions are based on hearsay and there is no scientific evidence behind it. I think its right to point that out.

It's the 'you should ask for this treatment as I've had it' or 'this treatment is commonly used in america why are we not being offered it' comments. Or 'why don't you get ------therapy?' . I feel this makes people think they are not getting the best care and ask 'why am I not getting that?' We need to put some trust in the experts. Like Emma quite rightly said we can say what treatment we are on and give a general idea of how we are managing with it and even say what works for us but not to suggest to someone what treatment they should have.

We are thrown into turmoil when we receive this diagnosis and we all find the best way to deal with it. I want to give people hope and encouragement not feat of not doing the right thing.

[Georgie1]

Hi Lynba,

Yes I think we all have to be careful of what is said on here and other sites. As you say people can say what treatment they have received and if it's worked for them. As we all know everyone is different, as is there cancers. So may work for some will not be good for others.

It's good to hear the really positive stories, they are helping me to keep up my positivity.

I am sitting in the waiting room with about 30 other cancer patients waiting to see my Oncologist, this my first time attending and am not confortable.

[Hidden in reply to Georgie1]

Georgie,

good luck for today, keeping everything crossed for you X

[brewster]

Hi Lynba and all,

This is the first time I have commented on this site but have looked at many questions and answers, ( I am probably in denial) but after reading this it was breath of fresh air, I was diagnosed with non hodkins lymphoma in 2010 and started chemo, it was near my kidney on lungs chest and abdomen, after about 4 chemo.s my heamatologist said he didnt now if it was a mistake by the ct people but the ones on my lungs had gone slightly bigger, anyhow after discussing it with the team they still thought it was lymphoma, but to cut a long story short after eight chemos the lymphomas had gone but not on the lungs, so after a bronchoscopy and ct guided biopsy I was told it was lung cancer and stage 4 but I dont think it is anywhere else but the lungs. I was told they didnt know whether it was months or years I had left.

I had 31/2 lots of chemo because of low white cells I think, and because it wasn.t working they decided not to bother with the last half, and as it was xmas and cant say I was bothered, as I was feeling quite ill, anyhow it was decided that because it made me ill it was pointless making me more unwell by giving more chemo when I wasn't feeling to bad( which is very hard to get your head round as all you want is treatment),and they would leave me till I started to feel unwell, which I am at the moment but seeing my oncologist tomorrow, so hope she can help and perhaps start me on something, but the point I am trying to make after reading Lyba's comments that is the way I felt,I have not had any treatment since December 8 months ago, and when I look at the site and read all the comments I think why am I not being treated why are they not trying that on me, why cant I go on a clinical trial why why why, so it was nice to read that everyone one is different and as you say what works for one wont work for another,and that I should have more faith in my oncologist and listen to what she says, and that I am not being deserted as a hopeless case, because thats the way I felt, and though people have good news on the site and rightly so want to tell everyone and shout it from the rooftops and give hope to people which is also good, but when you yourself feel that you are left in limbo and with no treatment you worry all the more, so thank you very much lymba

[Hidden]

Hi Brewster,

sorry you are going through this too.

From reading your post it seems to me that you had 2 cancers at the same time? and the LC was found as a consequence of the having the lymphoma. Although a stage 4 its lucky it is only in your lungs, that's a bit like me, mine is only in my lungs although it is also a stage 4.

I think your oncologist is doing what is best for you. Chemo can make you ill as it kills good cells aswell as cancer cells. It also lowers your immune system so your body doesn't have the ability to fight even the most simple infections such as the common cold. In your case you have also had/have lymphoma and have had chemo for that. Some cancers, particularly lymphomas and leukaemias, may reduce the effectiveness of the body's natural immune defences. They do this by preventing the bone marrow from producing enough healthy white blood cells. So you have had a double whammy!

All treatment is based on risk. IE. Is the risk to your life greater with the treatment than the cancer itself or visa versa. In your case it seems that you were at greater risk at the time from the treatment than the cancer so that could be why they recommended a break. It would give your body time to build its self back up again. That is probably also why they said they would look at starting it again if you became ill. I hope that makes sense. I think your oncologist is doing the right thing for you.

I think is is difficult for a none medical person to understand why certain decisions are made, like I said in the original post, there is usually a discussion with many professionals into what the best treatment for a particular person is.

I hope I have made you feel more positive about your situation. Good luck for tomorrow, let us know how you get on.

Lyn x

[Hidden]

Hello Lynba,

I too have been a little shocked over some of the advice being given over the last few days, some quite negative and some rather insensitive and blunt. You are right, we all react differently. I tend to use the site to get positive feedback as I already have enough negative thoughts of my own floating around in my head. I find the posts made by yourself and Bill exceptionally encouraging and always lift my spirits during this very difficult time. x

[Hidden in reply to Hidden]

Hi Lulla,

I'm glad my posts lift your spirits, I feel almost like a veteran now 17 months down the line lol. But as each day go's by I feel more and more positive and want everyone to know there is hope.

Stay positive, wishing you all the very best

lyn x

[crana in reply to Hidden]

Thank you, Lyn.

As a newcomer to this site & having read all your posts, I agree whole-heartedly with everything you have said.

Everyone's cancer is unique to that one person!