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I got a letter telling me I had cancer

20 Oct 2019 00:50

Two weeks ago I saw urologist and was told my simple renal cyst had grown and was probably cancer. Had other tests as I was coughing up blood and an echo for irregular heart. Had bronchoscope and told no biopsy done. Then today out of the blue I get a letter telling me I have cancer in my pelvis, abdómen lungs and kidneys. Not seen a doctor no appointment made for me and no treatment told. I can't even ring them as it's the weekend. How can they just send out a letter like that and not tell me anything else

I got a letter telling me I had cancer

20 Oct 2019 09:34 in response to libertyuk

Hi there ...

Oh my, just when we think we've heard everything ... how thoughtless ... has it really come to this ... no face to face with nurse or McMillan in next room to talk to after ... that's really bad .. and should never be allowed to happen .. it's like being pushed out of a plain without knowing how the parashoot works ..

I'd deff put in a complaint to your G Ps and hospital where that letter was sent from .. oh my .. I'm so so sorry ... l hope you have people around you, you can talk too .. if not this is a great place to chat or vent .. as we know how things effect us ... deff stand your ground now though .., official complaint time , l recon ...sending you a vertual hug....  Chrissie xx

I got a letter telling me I had cancer

20 Oct 2019 15:34 in response to Chriss

Thank you for the reply. I have no one to help. The worsting is for months I felt ill the cyst was growing fast and the gp refused to refer me telling me cysts are harmless. He even said it's because I was depressed and just take more pain killers. Then when I coughed blood the hospital doctor also said it was anxiety and I should take up drinking wine. I pushed for a ct and other tests I knew something was wrong, high blood pressure that wouldn't go down night sweats weight loss. Now I am going to die as they said it's untreatable all by letter and not one bit of help. I am so scared I don't know where to turn for help or now want to speak to the doctors that refused to take me seriously

I got a letter telling me I had cancer

20 Oct 2019 16:05 in response to libertyuk

I'm so sorry you've received that awful letter. Try and sit tight until you know for sure what your options are. Will be thinking about you and will pray for a good outcome. Take care lovely x

I got a letter telling me I had cancer

20 Oct 2019 16:36 in response to libertyuk

Hi there ..

It's darn right bad , to put it mildly ... there's been a few like your story on here, that have broke my heart..  I just hope you can do something , write somewhere and put in a complaint, because if your journey saves one other person going through this , then you've done something ..

@davek ‍  knows a lot more then I do , where to right ..  So hopefully #Davek will pick this up .. I'm so so sorry .. but you can vent on here anytime .. we can't take it away, but we can hear you ... cancer sucks, but sometimes when your just not being listened to, it's makes it 10 times worse ... 

Sending you a vertual hug...  Chrissie xx

I got a letter telling me I had cancer

20 Oct 2019 17:03 in response to libertyuk

Oh my goodness....this is truly awful and my heart goes out to you. This should absolutely never happen. Such news should only be delivered in person by a consultant with a nurse to chat to after as @Chriss ‍ has said, and I hope you can find the strength to complain. To leave you in this limbo is quite simply unforgiveable and cannot be excused. I am simply astounded and so sorry for what you are going through. Sending hugs...you will get lots of support on here as you go through this. xx

I got a letter telling me I had cancer

20 Oct 2019 18:27 in response to Minska

Thank you all so much, I don't even have pain relief and am in so much pain today. I am scared but can't call until tomorrow to ask why they have done this like this. I want to fight but don't feel well enough I seem to be going downhill fast suddenly and the hospital don't care they seem to have given up on me without even telling me. I don't want to die yet I am not ready I have things to sort out and feel so alone right now.

I got a letter telling me I had cancer

20 Oct 2019 18:38 in response to libertyuk

Hi there ...

Ring Marie curry and McMillan tomorrow... they are there from 9 to 5 Mon to Friday... tell them what happened and that you can't take any more .. tell them how you feel ... and ask for help ... 

Don't give up yet, there maybe a glitch in the system and they just need a prod ... it could be your feeling so low, and easy to give up, when now try and find the strenth to fight and find someone in your area who will help fight in your courner ... 

There are people that care out there .. it's just finding them... and your Dr may know what will happen next, so give them a ring ... if you need someone to chat to now, look for the Samaritans number in your area ... at least you can talk to someone ...  or if you dial .... 116 123 ... they will put you through to someone there ...  Chrissie xx

I got a letter telling me I had cancer

20 Oct 2019 19:57 in response to Chriss

Thank you so much, I can't go to my gp I don't trust him anymore, this is the third time he has misdiagnosed illness in two and a half years, I will call the hospital first thing and the Macmillan nurses, I feel so let down by the nhs right now

I got a letter telling me I had cancer

20 Oct 2019 20:06 in response to libertyuk

Good luck and Let us know how it goes ...  Chrissie x

I got a letter telling me I had cancer

21 Oct 2019 23:38 in response to Chriss

Hi LibertyUk,

Sorry about the delayed response, I've not been online for a few days. You most definitely shouldn't have been given the news that way. As others have said there are protocols in place to make sure patients have all the support they need, the diagnosis and prognosis explained to them and a discussion about what treatments may or may not be available.

My guess (and it is just a guess) is that someone at the hospital has automatically sent you a copy of a letter from your urologist to your GP (which is best practice) which has gone out before an appointment has been made for you with an oncologist. This sort of mistake should never happen but it has and it wouldn't be the first time this sort of **** up has happened. 

It would be worth ringing the CRUK nurses in the morning for some support and guidance. You might want to phone the hospital and ask to talk to the urologist's medical secretary and explain to her that you've received the letter out of the blue and asking whether a follow up appointment has been made with either the urologist or another clinician such as an oncologist or a cancer nurse. 

Normally, I'd also suggest arranging an emergency appointment with your GP and getting them to chase up the hospital for an explanation. 

By all means raise a complaint but first find out what the heck is going on and what treatment options you may have. I'm not a doctor but I don't understand how a urologist could jump to such a conclusion based on just an ultrasound without a biopsy, CT, MRI or PET scan. Normally people struggle to get a diagnosis until there is no reasonable doubt. 

I hope you get some answers soon!

Dave