Can’t believe it misdiagnosed again now looks as though I also have kidney cancer.

[Debonair1]

I am feeling very deflated. I hadrecurrence of oc in October last year. Had mixed response to carbo on its own, decision was then made for wkly taxol again mixed response. At this point it was suggested I seek further help from the Christie’s. As they had no further treatment to offer me. Christie’s Where I had wanted to transfer to for over a year.

I had my first appointment with the professor, who took one look at the scan and said I think this is kidney cancer not oc. I was shocked. He then made arrangements for biopsy if everyone at mdt agreed with his opinion.

Went back yesterday, full pathology report not back , but the indications are it’s kidney cancer.

I am in so much pain in the kidney area , that the pain seems to have overtaking my life as I feel so ill.

Got to wait another week now for pathology report to be done. He did tell me if this was the old way of testing it would have been confirmed asbkidney cancer.but small chance still oc.

I am in bits, as this tumour was too small to measure at start of treatment, now over 10cm.

I just feel that if 1of the 3 consultant had picked this up at my midway scan, I would have had a good chance of a cure from this cancer. My oncologist at the time had gone off sick so seen a different dr who did not specialised in oc. But have seen oc specialist since. I was also told I was platinum resistance, have been told today I am not as reason chemo did not work on this tumour was it was the wrong chemo for kidney cancer.

So many thoughts going through my head, how could I be misdiagnosed for so long again. Bad enough my gp got the oc wrong for a long time. But to happen twice. And to still not know what is going to happen , if it can be treated or not. Is making me very tearful and depressed.

Sorry for very long post, middle of the night mind in a very dark place.

Agnes

[Jessica-DianeB]

Hi Agnes,

I’m so sorry you are facing this, it is traumatising getting one diagnosis and as late as it was without having to face a completely new scenario.

The waiting is agonising, but from what I can gather your new oncologist sounds more experienced.

Speak up to your oncologist about any fears you have, so hard I know, but better than having to 2nd guess.

Sending hugs and sleep xxx

[Debonair1 in reply to Jessica-DianeB]

Thank you for replying. Just feel until I know exactly what I am dealing with, can’t really ask any questions. Hoping the wait will not be too much longer. Xx

[TinaB1]

Hi Agnes ...

This is a rubbish disease in whatever form. You’ve had some difficult times and then to find you mightn’t have Ovarian and that you may have had to have gruelling treatment is hard especially since it’s not been very effective.

It’ll also mean a loss of confidence in your original team and some justified hurt and resentment.

I was thinking though that this may be good news. You could be given a very effective treatment now and maybe you’ll have a chance of a full recovery. I so hope that for you Agnes. Xxx

[Debonair1 in reply to TinaB1]

Thank you so much for your reply. I am hoping that the treatment they offer will do the trick . Everyone is concerned by how fast it has grown. I just hope it is not too late to cure. X

[Maus123]

Argh. I'd be having dark thoughts too.

But look forward if you can, Agnes. The Christies is hopefully well suited to come up with a plan to tackle the kidney tumour and get you some relief from the pain.

Let us know how it goes, if you can.

Sending hope. Maus

[Debonair1 in reply to Maus123]

I do feel really confident in the Christie’s, which I never did at my last hospital. Mainly to do with dr having no communication skills. Xx

[Manchesterlady]

Hi so sorry you are having such a horrible time . Pleased that you are with the professor at the Christie. I saw him last week , what a lovely man . You are in the very best hands now . Wishing you all the very best . The waiting is just the worst . Xxx

[Debonair1 in reply to Manchesterlady]

I have only seen the professor twice , and I can honestly say I have never felt so comfortable and feel that he is doing everything possible for me. My only regret is I did not transfer sooner to the care of this wonderful man. Xx

[Seasun36-uk in reply to Debonair1]

You are in the very best hands now Debonair, don’t look back. I have only seen Prof J on u-tube, but he seems one in a million. I wish he could clone himself & come to every Onc Unit! 🙂 He is on your case!

Linda xx 🌺🌸

[CallmeMum]

Hi lovely

Well what a bunch of stupid oncologists if you have kidney cancer and not ovarian!!

When you find out the actual results complain to the General Medical Council about the useless drs in question.

Get the right help for whatever type of cancer you have (hopefully they’ll cure you).

Ask for copies of your medical records, (just for reference) in case anyone asks, then sue your local NHS trust for malpractice, stress and everything else that you can think of.

Xxx

[Debonair1 in reply to CallmeMum]

I am going to be asking questions, don’t think I would sue, but I do have lots of questions I need answered .

Xx

[January-2016-UK]

It must be agonising to be in such pain while waiting for a new diagnosis. You must be feeling very frustrated.

Hope you can start the new treatment quickly if kidney cancer is confirmed. Are you taking any medication for the pain?

[Debonair1 in reply to January-2016-UK]

I don’t know, how quickly it will take to put new treatment in place. The professor is hoping that they will not need to have mdt to discuss and he is organising scans etc so when I get passed over it’s with all up to date information. Xx

[Cathhunt]

Hi sorry to hear you’re going through so much , can I ask what you’re symptoms were ?, Cath

[BeeWild]

Hi Agnes the Christie is a great place and is where I go. You can always ask them anything don’t be afraid to and they will always answer you x

I would suggest you ask them to refer you to the psychoncology department for counselling. I go every 2 weeks and have found it really helpful to have someone independent of family to offload to.

You’ve had a horrendous time let’s hope they get you the right diagnosis and treatment now xx

Sending hugs

Bev xx

[Debonair1 in reply to BeeWild]

I will ask next time I am there. I do feel as though I need extra support at this tiime.

Thank you for telling me about this service. Cxx

[Coldethyl]

Sorry you have endured so much unpleasant and seemingly unnecessary treatment - hopefully this is confirmed ASAP and you can begin appropriate treatment - lady I know was found to have unrelated kidney primary to her breast cancer and surgery was all she needed - wishing you well x

[Debonair1 in reply to Coldethyl]

I am with a fab team now, so hoping I don’t have to wait much longer. All just seems such a mess.

Hope your friend is ok, and also getting the treatment she requires. Xx

[Tesla_7US]

OH Agnes, I am speechless! How this medical system has failed you multiple times! This is heart breaking. I cannot fathom the lack of professionalism that has brought you to this point. I can only hug you in my mind and wish for a better standard of care going forward. I too was misdiagnosed for YEARS before my OVCA was discovered in the ER in US. Please know that you are not alone in this misery and that you have all my empathy.

[Debonair1 in reply to Tesla_7US]

It is so scary how women all over the world are misdiagnosed. Thank you for your support. Xxx

[caf132]

Hang in there Agnes. You have been through so much! If kidney cancer is present you can live fine with just one kidney. My husband had a transplant as he lost both kidneys nine years ago.

What oc did you have originally and what stage?

Please keep us posted.

XX Carol

[Suzanne333]

Oh no. That’s so awful for you. No wonder you feel depressed. I’m sure they will now get on it and you’ll get the treatment and pain relief.

Thinking of you. Hugs xxxx

[Seasun36-uk]

Just to say - a friend (male) of ours had kidney ca, had the affected kidney removed & had chemo....that was over 10yrs ago & he is well. I know it’s not the same....but I just want to encourage you. Lxx

[Debonair1]

That’s good to hear, thank you. X

[IrishMollyO]

Hi Agnes

Like everyone else who has replied here I am shocked to hear you were misdiagnosed . I hope I understood correctly but is it the case that you never had OC in the first place ? If it was never OC in the first place perhaps the kidney cancer will be more treatable . We all know to our cost the ups and downs of OC or in my case PPC. I just want to tell you a good news story about kidney cancer that my sister in laws sister experienced earlier this year. She was devastated when she was diagnosed with Kidney cancer and had no idea what was in store. However her surgeon was able to remove the tumour without removing the kidney and she didn’t need any further treatment . She is now putting the whole experience behind her and going on with her life. I hope and pray that your wonderful team will have every success with yours. Take care

XXX

💚💕

[Debonair1 in reply to IrishMollyO]

That is just wonderful need to hear how well your sister in law is.

I am hoping to find out soon what they will be able to do for me.

Thank you for helping to lift my spirits. Xx

[IrishMollyO in reply to Debonair1]

I’m so glad to help Agnes. We all need the good stories to give us hope and there are many we don’t hear about . Best wishes for a positive outcome. Take care

XXX

💚💕

[Solange]

Agnes, I've only just seen your post.I just want to say how sorry I am for what you're going through. I hope you are sorted out soon and the appropriate treatment started. Sending a big hug and love, Solange xx😊

[Debonair1 in reply to Solange]

Thank you so much. All this support means so much. Xx

[lynn6156]

Agnes, I've no words for your situation, although I know I'd have handled it with a lot less dignity than you. I'd have been screaming for someones murder!

I also know a lady who had bladder cancer spread to a kidney some 8 years ago and she was successfully treated. And you're in the best place so surely now you're due some good news!

But, when it's all sorted and you have your treatment underway, I'd give some thought to how this happened. It must be either a surgeon or a pathologist that has made a mistake and that needs highlighting and bringing to someones attention because he could be misdiagnosing other woman too. We've all seen the fuss when a hospital has made mistakes with mammogram readings. I'd love to know which hospital this was (to avoid!!) but there will be Pals there (name changed recently to something forgettable like patient and family experience...). Maybe they could advise you.

hugs

Lynn

x