Iv noticed a few folk saying how glad they are to have advice from a BCN and had a few pms asking for my opinion on treatment but can I just point out that my experiences and opinions are just that… Purely my experiences and opinions… I am very happy to share them with you but they are by no means the gospel.
If you have concerns please contact your own team as I don’t know any of you personally and don’t have access to your records to make informed decisions about treatment plans, diagnosis, etc.
Although I have a personal interest in chemotherapy, treatment and beyond my clinical experience is in screening and genetics (also sexual health). If I can find research and evidence I will do so but I really can’t give personal medical advice, but can generalise.
I am extremely happy to share my knowledge and help clarify things if I can but I don’t know every little thing about breast cancer and can’t give second opinions or advice on what treatment you should behaving etc.
Lulu I think you have been very wise to make this post. You are always so generous in sharing your knowledge and experience throughout the forum even when you are struggling yourself. It is always a danger that people will start ‘asking’ for advice and recommending that others ask when they know that a member has medical knowledge and that puts you in a difficult position of course. I don’t see why anyone should take offence at your post.
I certainly would agree with Dawns post - no-one should take offence at what you say here. Your support and sharing of information is very much appreciated, as is others, but for specifics for individuals we need to be clear that this should be directed to our medical/nursing team. Take care. J.
I agree Lulu and fully appreciate your post. Your support is invaluable from not just the angle of a nurse but as a BC patient. Youve sat both sides of the fence and that makes you such great support.
I agree we should always speak to our own health care teams when seeking advice but you help us put things into perspective and lay it out so we understand it and I for one am grateful.
My BCN’s are great but none of them have had bc themselves so although they can sympathise…having it yourself is a whole new ball game, you feel what we feel, physically and emotionally.
I tell you what…as a trade off and a thank you…if ever you want to know anything about West Indian specifically Jamaican cooking…I’m ya gal! lol
Lulu, you have excelled yourself in sharing the knowledge that you have acquired and always help in any way you can, it is much appreciated by all. I’m sure your post will not offend xx
Lulu, I am sorry to hear that having shared a lot of detail about yourself and your job on your profile and in some of your posts here, you have been inappropriately asked to give medical advice.
Just a general observation that I consider it would be very misguided for anyone to seek out medical advice from anyone on the internet. The only people who can give valid medical opinion are the appropriately qualified and registered professionals who see a patient face-to-face and have access to their full medical history.
I hope I don’t offend anyone when I post this reminder that sadly there are some horrible people who prowl the internet looking for vulnerable people of whom to take advantage.
Some advice and shared experiences on this forum are no doubt invaluable to many. I find some of what I read here to be useful, some of it is, at best, misleading and at worst factually incorrect and potentially dangerous.
If people want second opinions they have the right, in the UK, to be referred to an alternative hospital in order ot gain one.
As you’ll have gathered I’m quite an outspoken person so I hope I haven’t offended anyone either.
I just want to say that I came to lulu asking for advice because of what you have been through and you advice was invaluable, it was advice only nothing else but really helped me prepare. So I want to thank you because you were amazing to me when I really needed it.
Lots of love
Fran xx
Hi Lulu, I have always found your comments excellent. You are very knowledgeable and supportive. We all understand that there are individual circumstances and prognosis which means we should talk to oncs, BCNs and surgeons, but your support and advice has always been invaluable to me and is very much taken in the spirit intended. Don’t worry and please don’t stop xx
I think it’s good to remind us all and i doubt anyone would be offended. I admire your openness and honesty.
You have helped me in the past and I’m very grateful for it. I think you always write very balanced postings.
It’s good to have a general reminder from time to time though that all thoughts given on here are just that whatever our backgrounds and can’t possibly take into account all our individual circumstances and health issues.
This site has though been invaluable to me in terms of support and deciding when I need to get further advice from someone like my BCN or Onc and how to go about it.
Hi lulu, thank you for posting this, I certainly never took offence and I totally understand where u are coming from. I am new 2 all this and I have found your advice on posts excellent. Karen xx