Told I was misdiagnosed and it's NOT bone secondaries, it's Avascular Necrosis...!

Gosh, Lizane, that is quite some story.  My first thought was that I would open a bottle of champagne, I must confess! 

But they really should have got their facts right before misdiagnosing you this way .  I can imagine how stressed and upset you were.   I would also write this down and send it to the pals section of your hospital.  You should at least get an apology, and they need to learn from their mistakes.  

Enjoy the rest of your weekend. 

Wow, what a roller-coaster of emotions you have gone through!

You have every right to feel angry at the turmoil you have been through. Mistakes happen but, as you say, it doesn't take much for people to check their facts before delivering devastating news.

I hope you get an apology and answers as to how this happened. In the meantime I think you deserve to spoil yourself with wine and chocolates!!

xx

Hi Lizane,

This is SO stressful for you, I am  glad to hear that you have had full confirmation that the treatment can go ahead. But.. how do you get over the shock of being given an incorrect diagnosis?  Did the registrar make their  diagnosis based on their findings alone? Would it help to express how you feel to your BC Nurse and ask her if an apology would be in order for the distress caused to you? Or do you think the registrar made a genuine mistake & deeply regrets it?

I think that the way the Oncologist conveyed the information to you and the impact it subsequently had on your health and stress levels; indicates ( from reading your email), that her ability to communicate with patients regarding  devasting news is currently inadequate.

It may  help to express your feelings, to ensure that others don't have to experience a similar situation. People are only human, and mistakes do happen! But as we know, prevention is better than cure. 

If it is not possible to speak/ see these individuals, you could consider getting their email addresses /contacting:  via their secretaries, and expressing how upsetting the whole experience has been, and that you are very relieved to finally have the "correct diagnosis".

When I was undergoing treatment, I saw a Macmilan Psychological Therapies Counsellor at the hospital. It assisted me with the shock I was going through at the time of my diagnosis: Nov 20113. I had a delayed reaction and initially felt quite numb as though it was happening to someone else. Now, in March 2015, I'm still coming to terms with it, my Rads ended Feb. 12th 2014. 

I wish you well. Hugs. Judith xx

Hi Lizane

Read your discussion and so sorry for you at being given a lot of mis-information.  There is a website dedicated to AV so I hope you have googled it.  There is also a clinical trial however it is for the femoral head so I don't know if this applies to you.  Something for you to read up on and take with you to your appointment.  All my love, hugs and very best wishes for you tomorrow.  Do come back with an update.

....still fighting this nasty little critter

Hi Lizard

You have every right to express every emotion you are feeling. I think you probably are experiencing  every emotion ever invented and some.So glad you do not have secondary cancer.X

I WOULD BE '"##@@@@ FURIOUS!!!!!!!! and you need to let them know the effects of information being delivered in this way. IT'S HORRIBLE. 

Avril

Hi Lizane

I had to reply to you as I went through a similar experience.  During chemo I experienced back pain and after an MRI was told they were 99% sure I had bone mets in my spine. I was told by oncologist, registrar and bcn that they were certain of the diagnosis. 

Whilst trying to cope with chemo anyway the stress of the news was horrible.  I felt that way I was informed and the lack of any follow up as to how I was coping was not good enough.  I had another MRI three months later and was told that it was not secondary cancer but heamangioma in the bone which is completely harmless.

The relief was amazing!! - but then the anger set in as to how they could leave me for nearly four months thinking I had secondaries. I am a few months on now and have chosen not to be angry but be happy that they did what they thought was right with what they thought the diagnosis was - they had changed my medication and were doing what they thought was best for me.

I now feel like I have been given a second chance and I am going to make the most of it.

Take care

Jen xx

Hi Lizane I have just read your post - shocking beyond words!  I'm almost in tears imagining how you must have felt being given a terminal diagnosis.  I am delighted for your good news but feel you should seriously take action against the Registrar - it is totally unacceptable and inexcusable.  The wife of someone I work with was also diagnosed by a Registrar who, after referring to a book, told her she had terminal lung and bowel cancer.  That was in 2008 when she was 34 and just after she had given birth to her third child.  As you can imagine it was devastating news.  Well she is still here doing really well and is now having treatment to remove the tumours which she had been told were inoperable! She is an absolute inspiration. Her Oncologist has admitted the Registrar misdiagnosed her and subsequently received a disciplinary at the least.  Also When my daughter's fiancé's dad had skin cancer he was told to put his affairs in order as he had about six weeks to live.  He got a second opinion, cancer was removed and that was 10 years ago!  Do these people realise what they are doing to a person's mental state?  How would they feel being given that diagnosis? To be given a terminal diagnosis is bad enough to come to terms with but to be given it in error is beyond comprehension in my mind.  Sending you hugs and best wishes for your recovery going forward. Denise xx

Hi  - I've been told recently that I have bone mets but am unconvinced about my diagnosis for various reasons.  I'm about to ask for another scan and for another radiologist to look at my PET scan (this is the only scan I have had before being diagnosed as secondary).  I was interested in your story for obvious reasons and wondered how AV has made you feel (what are the symptoms?).  I'm aware that it shows up on PET scans (along with other inflammatory conditions).

Thanks for your help and hope that all is well with you now.

This is cruelty ! Unbelievable, I know they are human but they can’t play with your emotions and life like this . 

I hope you are treated like royalty after this debacle. 

You have been so brave . 

I would have ran to our deserted beach and screamed . 

Take care 

love 

Ruby Rose  

Sheeeeeeesh! Gentle hugs to all those who have a diagnosis that has been 'revised'.

I am beginning  to wonder how common this is. I do appreciate that diagnosis can be tricky, that the diagnostic procedure is evolving and that tools, tests and markers are being developed and better understood...which sometimes throws up more questions and uncertainties than answers. I also know that we all feel shell shocked and out of control at the beginning of the journey and want answers and a plan asap.

But....my mother, having had breast cancer, developed breathing/chest/cough paroxysms and was  constantly told by GP that there was nothing wrong...backed up by a couple of reluctantly requested x-rays. Eventually she was sent to another hospital for lung biopsies. In short... although large samples were taken they showed no cancer and she was told by a beaming doctor that she did not have cancer. We didn't cheer. I said something serious is obviously going on.

 Her health deteriorated rapidly and she had several emergency admissions , all declaring her to be OK after one night or even two in hospital... despite being admitted through  Resuscitation. The beaming doctor was now at our local hospital and couldn't believe the rapid decline. It eventually transpired that she was one of the rare people who despite the biopsies, did have cancer and so aggressive that  palliative relief was all that could be offered for her last weeks. The rest of my family didn't want further investigations after she passed so I don't know the type of cancer or if related to her BC.

Another example...a friend whose lifestyle has wrecked his health ( alcoholic on cheap cider, poor nutrition, poor self care, cannabis and heavy tobaco smoker, poor living environment in terms of cleanliness) was admitted to hospital again. He has gout...very painful but needs managing by him making different  life choices. This time he did look Ill ( a hospital stay can be like a hotel...clean, warm, a bed and folk to attend to you and feed you!!!). He had a bloated belly. Within a day or two he was told his liver was shot... which he probably expected from the bloat and alcohol...that one drop of alcohol was a no no and that he also had stomach and lung cancer.  Quite the slap of a diagnosis. However two days later he was told that err...actually he didn't have stomach or lung cancer and that they were still looking. ????

Eventually they said TB so a course of tablets... !!! Sadly he still isn't making better choices... just switched from cheap cider to cheap wine.

Koo this post is long so I will stop but I am wondering what happens behind the scenes as it were... among the medics when a diagnosis has to be 'revised'? The law of averages says some must be incompetence, some neglect, some system and communication failures etc and that in a lot of instances, the patient won't be well enough to be their own advocate and kick up a stink demanding answers,  and, perhaps more importantly, the reassurance that moving  forward their care and that of others in the same situation has all avoidable angst avoided!

Take care