very scared. Triggering message. Please read with caution. I have severe muscle wastage. I have been researching and I think I might have a very serious cancer. Has anyone heard of cachexia. I am very scared. Can someone help me with this?

Hi Lizzy84 please don't panic and please don't research things on the internet as a lot of the information can be wrong, out of date or misleading.

You haven't said why you think you have been misdiagnosed but I assume it's because you feel you have lost a lot of weight and have muscle wastage.  Do friends and family and your GP also think you have lost a lot of weight and have muscle wastage? When I was first diagnosed the stress and fear of having cancer caused me to stop eating and I lost a lot of weight and became weaker so it could be this is what has happened to you. If you are concerned make an appointment to see your GP and they should be able too tell you whether your weight loss is severe and indicative of anything more serious.

My father died of cancer and he had cachexia and he was literally just skin and bone,  and he didn't have the strength to walk or do anything at all.  So try not to panic and go and see your doctor.

If your diagnosis is correct and chances are that it probably is then a small her 2 negative cancer should be very treatable.  Many ladies have had much worse and they are still alive many years later.

Getting any sort of cancer diagnosis is very scary but I hope this helps you feel a little less scared.  Breast cancer is very treatable these days with high success rates especially when caught early.

Hi Elizabeth sorry you are having such a worrying time but it is unlikely if you have been given a diagnosis that the experts are wrong, please contact your Macmillan nurse and talk to them, do NOT google, even a common cold can be terrifying if read the wrong way.  

I have to disagree here. I was misdiagnosed at first and given the wrong treatment for nine months, so I would not dismiss a concern about a misdiagnosis out of hand.

I agree with the advice to talk to the professionals rather than to Google.

first of all I’m really sorry you’re struggling. Panic is the worst feeling in the world. Secondly, I have stage 4 breast cancer. What I have learned from having cancer for the last nine years ( stage two to begin with) is to not worry until I know I absolutely have something to worry about. What that means for me is I do not invest energy worrying until I have heard directly from my oncologist that I have something to worry about. I have improved the skill with continued practice. The Internet will scare you to death. Avoid it. hang in there.

I agree with avoiding google. But also, always be aware you can ask for a second opinion, or even go to a different hospital. If you can afford it, you can even get a private consultation - my mother did this and was immediately admitted to the Royal Free for tests under the NHS. She has an incredibly rare neurological condition which isn’t cancer but causes growths in her body and brain. She is now seeing the same doctor under the NHS. 
Elizabeth it sounds like you’ve only just been diagnosed. It is likely you still have a lot of tests etc ahead of you and that this is not the definitive diagnosis. If you are unlucky enough to have secondary cancer it is very probable they’ll realise something else is wrong. Especially with the weight loss. However there are many possible reasons for weight loss - even including anxiety, so that needs investigating. Probably isn’t worth asking for a second opinion until you’ve had a proper first opinion, after all the tests and biopsies. Doctors work through a system of differential diagnoses - that is, the most common and dangerous things first and then they work down the list. But first, like a detective they have to gather all the evidence, which is scary and frustrating- I’ve been through months of testing myself. All the best

Dear Anabrook,

I am more than certain that I have cancer cachexia. I am certain. I have already had intensive tests. I know what I am talking about. yes. I went in today to my local hospital today with my chemo card. I am at risk of sepsis and every time I go I am treated like I always have a psychological problem when it suits them and they use it against me. They do not like it when we rise above ourselves as least in my case. I am treated like an attention seeker. I am emaciated. The doctor when I refused to leave said to the security guard ; 'can you please remove her.' I was quite shocked at that. They were waiting there and ready to grab me. This is not the first time this has happened. In late August, I was in hospital and the security guards grabbed me and put me in a small room. One of them then dragged me around and hit my head on the floor constantly by pushing my arm in a warrior like state. I want help as I know my life expectancy has been affected. I have had the police come to my home when it suits them and bully me. I want to live and I want help with my health care. I am not a dog that you can push around.

I need help. I need help. Please can someone help me.

Kind regards,

Elizabeth

Dear Anabrock,

I have tried to get a second opinion but not face to face. I don't know why that is. The consultant seems to want to make it herself. I seem to be blocked from having a second opinion face to face. I don't know why that is. Can someone please help me. 

I need some help. Can someone help me?

Elizabeth

If I were in your situation I would consider the following options:

1.   Request to be transferred to and treated in another hospital.

2.   Going to the GP to ask that the weight loss be investigated, rather than an assumption made that it must be a reaction to treatment. Unless proven otherwise, they cannot discount the possibility that something else may be going on. 

3.   Start noting down everything you eat and drink, and your weight over a period of a couple of weeks or so, to see what actually does go into your body and how your weight is affected.

4.   Ask to be referred to a professional who can advise on what foods to eat and whether or not you should be taking any supplements.

I have no opinion regarding what is really going on, but I am aware that things can be missed by the system so it is important to have all relevant investigations done, preferably by someone who can really look and think beyond the obvious. On top of being misdiagnosed myself, years ago one of my children was unwell and the doctors could not find anything wrong so a lot of pressure was put on us to go the psych route. I switched hospitals, and one MRI later we had clear proof that could not be disputed as to what the real issue was, and it was a clear physical issue. The difference between hospitals was that the new hospital MRIed a different part of the body, one that the first hospital doctors never thought to look at.