Hi,

It's a real dilemma when choosing the next steps and considering mortality rates v side effects. There is a lot to discuss here and so I've sent you a friend request. If you accept it, we can chat about this and I can give you some advice about the treatment etc. I'm assuming you are Braf negative as you haven't mentioned being offered a choice of Targeted treatment? 

I haven't had any drug treatment (I was diagnosed long before it was available for Stage 3 patients) but I know many who are currently having the treatment & I know that not everyone has side effects or bad side effects - everyone is different. 

With regards to you initially being diagnosed Stage 0 - it sounds like you were misdiagnosed & you were probably 1a. This is because a true Stage 0 (in-situ) does not spread (it hasn't grown below the epidermis into the dermis). A misdiagnosis rarely happens but in the melanoma community we have come across this a small number of times & you were unlucky. That being said, even if correctly staged, it may have made no difference to your treatment at the time. 

The treatment & side effects do sound frightening but it's having great results & many more Stage 3 patients are surviving without further spread. 

Meanwhile, if you would like to speak to clinicians to try & help make a decision, look at the Melanoma Focus website - they have a dedicated Nurses Helpline & they will be happy to try & help you.

Angie (Stage 3 melanoma patient since 2009)

Hi,

It's a real dilemma when choosing the next steps and considering mortality rates v side effects. There is a lot to discuss here and so I've sent you a friend request. If you accept it, we can chat about this and I can give you some advice about the treatment etc. I'm assuming you are Braf negative as you haven't mentioned being offered a choice of Targeted treatment? 

I haven't had any drug treatment (I was diagnosed long before it was available for Stage 3 patients) but I know many who are currently having the treatment & I know that not everyone has side effects or bad side effects - everyone is different. 

With regards to you initially being diagnosed Stage 0 - it sounds like you were misdiagnosed & you were probably 1a. This is because a true Stage 0 (in-situ) does not spread (it hasn't grown below the epidermis into the dermis). A misdiagnosis rarely happens but in the melanoma community we have come across this a small number of times & you were unlucky. That being said, even if correctly staged, it may have made no difference to your treatment at the time. 

The treatment & side effects do sound frightening but it's having great results & many more Stage 3 patients are surviving without further spread. 

Meanwhile, if you would like to speak to clinicians to try & help make a decision, look at the Melanoma Focus website - they have a dedicated Nurses Helpline & they will be happy to try & help you.

Angie (Stage 3 melanoma patient since 2009)