Hi all after much deliberation I have asked to be transferred to another hospital and for a second opinion. I cannot accept that a CNS nurse told me I was clear of cancer after surgery when I had to ask her because the consultant gave my histology feed back in a way that I wasn't sure and when I reoccured 6 months later being grade 1 Stage 1 a to find out the doctor's knew there was cancer cells in my blood (they have had to tell me now because I pushed) and because of my low grade and stage deemed this an acceptable risk indeed the NICE guidelines thinks it's acceptable risk. The hurtful thing also was when my husband was sat in the room with me in years saying cancer cells were left behind with the same CN nurse she said nothing. The hospital doctor's have picked up on something with me because they have wrote to my GP saying they have explained to me re the cancer in the blood, in realality I have a drawing and was told how bodyfluids flow down and the second doctor told me about vestibule channels both avoided using the word blood. I have read Cancer UK about why does cancer come back and the blood is one of the avenues. My family have taken the view that I should be grateful they have treated me and alright they didn't share the full story with me and they have sorted it now. I thought that cancer treatment primary aim is to try and clear your body cancer. I asked the consultant why I didn't receive treatment for the cancer in my blood and she said they don't give it at my stage and grade. My response to my reoccurence from the oncologist was it was bad luck. I had a conversation with my GP who worked with my gynecologist and tried to defend them and asked me to have faith in them, I explained to her that 3 years ago I had to had 2 hip replacements within 12 weeks because my joints had fused together and I couldn't open my kegs. I had with a previous GP practice fought for years with arthritis pain even to the point of not being able to walk and ended up having a gastric bypass 2 years later I was told by the consultant that if left
for another 6 months I would have been stiff as a board unable to walk. I am not looking to blame anyone about the Cancer but having a treatment plan based on wait and see knowing having evidence cancer cells have been left cannot be acceptable. I have been given the rationale of decision making re treatment benefits v side affects and quality of life but should I have some say in my treatment. My GP has asked me to go to the Monday appointment because I am 8 weeks post brachetherapy and does not want to put my health at risk - there is some irony there somewhere - so I'm going to see doctor's who I don't trust I don't even know what my treatment plan is going forward. I think it's the not trusting that hurdles me to feeling the way I do. My husband tells me that to them in cancer land I'm small fry and to be honest i do feel worthless my life is worth the risk. Thank you for listening. X
That's really awful what has gone on Chickplc, I am not at all surprised you have trust issues with your medical team. One thing I always will say you have to trust your team and when things like this goes on your whole trust is gone and hard to get back. Yes go your appointment, I realise your sceptical but getting a second opinion is also important for you to fully understand what's happened and what treatment there is going forward. I also know how it feels to be let down and you do lose trust, I always try if I can to see the same GP and she's totally aware I have serious trust issues, this was because I kept being fobbed off with its just fibroids and I quote "nothing sinister" this has left me untrusting my poor GP who is my hero for being so understanding but was also the one that pushed the hospital for me when they didn't listen to me so I am greatful to that. Trust is very hard to gain but easy to lose. I am really pretty mad and upset for you especially as some seem to not think its a big deal - it is! And I wish these mistakes didn't happen, I know there is lot of strain in the NHS and when they do it well there fabulous but when these things happen it makes people do mad about it all and they should of explained everything to you, its their obligation that you fully understand treatment and your condition.
But I think you need a gentle hug and knowing that someone understands completely.
_GBear Xxxx
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Hi , firstly fingers crossed over your final staging. I have never had a PET scan or even offered it but it does make me wonder I hear about them mentioned in other groups to why the hospital doesn't offer them as a double check sort of thing when you are suspected of having cancer or have had it and to look for possible reaccurrance. I get it that they probably cost a lot of money but then I reflect on the possibility maybe it will cost less in the end in the possibility of catching it earlier and not having to have extra treatment but its always a difficult thing but totally understand what your saying about them.
_GBear Xxxx
What is a Community Champion? Womb cancer forum
Call the helpline for free on 08088080000, 8am to 8pm everyday.
“let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies
