Found out Mother had cancer almost by accident.....

[hollysmum]

My mother has spent the best part of this year in and out of hospital, following a serious urinary tract infection, a kidney infection, several mini strokes which have left her with a form of dementia, and then a drastic drop in her potassium levels, which caused her admission to hospital (again) on 15th April. She came home on 8th June! While she was in there (the potassium issue was resolved very quickly), she had a pelvic scan and a full body scan. My father visited every single day. These days she has quite severe mobility problems, and has an army of carers who help her and my dad, now she's back home. On Friday, their GP called in, unannounced, and showed my father a letter he'd had from the hospital. He'd already ascertained that my father had no knowledge of its contents. The letter said that my mother had suffered a pulmonary embolism whilst in hospital, and that she now takes Warfarin to thin her blood to protect against another, and also that she has renal cancer. The latter was picked up on the full body scan she had around a month ago. Neither my dad, my sister nor I had any knowledge of this at all until Friday. We are totally speechless, as well as very shocked. We have written a strong letter of complaint at how we have been treated - my dad in particular was very distressed. We haven't told Mother yet - she has an appalling short term memory, but we know that she'll be really frightened. We'll have to talk to her eventually, as she will have to have an operation, but none of us is looking forward to that. How dare the hospital behave this way? We are now waiting for a reply to our complaint.....

[rebel11]

Hi holly

 

Most Hospital's have a PALS Team if your not getting anywhere with your complaint, it might be an idea to contact them as well.

[Night Owl]

Hi Hollysmum.Sorry to hear of the awful time your mum has had and I hope that she is now getting the right care that she needs.

From what I can read there has been a total lack of communication between your mums doctors and your dad as next of kin.

It sounds like your mum has had some serious renal problems which hopefuly have now been treated fully.

Your GP has highlighted the renal cancer from the letter that he would have received from the hospital on your mums discharge.

 

From my understanding your mum had a pelvic scan and a total body scan.

I don't understand the need for a total body scan unless the doctors were concerned about something else.

Did the doctors discuss why they did the total body scan?If a tumour was detected at the total body scan were further investigations carried out? such as biopsies, where they take a small sample of tissue to send to the lab. for analisys to prove if it is benign or malignant.

 

What is the operation that your mum has to go back for?

Tumours can be fast or slow growing and may take time to show up on a scan yet alone be big enough to actually feel, as in breast tumours.

But if a malignant tumour has been detected then treatment should be started as soon as possible to give the patient the best outcome.

Was your mum ever seen by an Oncology Doctor? a specialist in malignant tumours.

 

May I sugest that you make an appointment to see your mums GP and ask what has been going on if you do not understand.

Or if you are going to hospital with your mum then your mums consultant would be the person to ask.Write questions down and ask the doctor to repeat anything that you do not understand.

 

Good luck.

Edited June 14, 2011 by Night Owl
Improve spacing!

[hollysmum]

Hello, Nightowl and Rebel11 - we literally found out about the renal cancer on Friday. There had been no mention of it prior to my parents' GP's visit to them on that morning, not even prior to the full body scan. What we were told about that was that it was to determine whether or not she had an underlying problem that would prevent her from having intense physio to help with her poor mobility. She had a biopsy, but not for the kidney - she has something called spondylodiscitis, a back condition, and they feared that there might be an infection present in that regard. That was clear. We've had no chance, as yet, to speak to anyone other than their GP, who is brilliant (and retiring at the end of the month!!). Mother will need to have some sort of treatment for the cancer, obviously, and the GP has told my father about the various options, but that it will ultimately depend on her overall state of health - she might not be up to having a standard nephrectomy, for example, but keyhole surgery might be fine. My sister and I were just so angry that my dad had been treated this way - he, in particular, has had to bear the biggest burden whilst Mother has been ill and in hospital this year. I have the details for PALS, and am prepared to swing into action if we don't get the answers we need and want!

[Night Owl]

Hi Hollysmum.

 

From what you say your mum has a debilitating back condition and if you say she had the total body scan for the future mobility and physio issues then they have found the tumour by accident.

Again as I have said before this tumour may be slow or fast growing. They could have done a scan a year ago and it may not have shown up.

Tumours only show there ugly heads when they are agressive enough to cause other problems.

 

Renal problems are usually investigated fully as they make the patient so poorly.

Abdominal ultrasounds, or CT scans are usually done to look at the kidneys size and condition, did your mum have one of these scans when she first had problems?

Again though if she had a tumour it may not show up untill it was big enough.

 

A nephrectomy, removal of a kidney can be done laproscopically, keyhole surgery, as it is less invasive and the patient makes a faster recovery.

If the tumour is encapsulated, only self contained within the kidney, then they will remove the tumour in one operation. This is the best outcome.

She may need further treatment and follow ups depending on the what they find once they have removed the kidney.

 

I may be wrong, but overall from what you have said this scan may actually have saved your mums life.

You must still get the answers to your questions and ask for better communication. Always ask for things to be clarified if you don't understand.

 

Good luck.

[rebel11]

Theres also a route to complain to the Hospital Trust, although they tend to be defensive.

[hollysmum]

Hi, Night Owl - thank you for your really excellent reply. I agree, I think they did find the tumour by accident - it's not that so much, it's the total lack of communication of what they found, when they found it. She had her last scan of any kind four weeks ago, so it must have been then that they spotted it. My father, sister and I were not told anything about it. I agree, too, that their investigations into other things will probably have ultimately saved her life, but again, we needed to be told about it weeks ago. The look on my father's face last Friday, when I called to see them, said it all really. He's coped with so much since January, watching his wife of 50 years become a totally different person (she has vascular dementia, diagnosed in March), and go through a great deal of pain (the various different kidney issues, and the back problem), that finding out about the cancer like that just topped it all, really. We certainly have no complaint about her actual care - the nursing staff were wonderful.

[Night Owl]

Hi Hollysmum.

 

Please don't think that I am in anyway making excuses here, but, there may have been a delay in informing you of the discovery of the Tumour because it would have been picked up by the Radiologist and then referred to a Consultant Oncologist to review.

If you are not in a Hospital where this level of care is carried out then this would have been done quickly as E-mail atachments and discussions BUT this still does not account as to why you were not told that they had maybe found something on your mums scans that required further investigation into.

This is pure lack of communication between the Doctors and the Patient and needs further explanation and an apology for the trauma it has now caused to you and your dad.

 

I hope your mum now gets the care she needs.

[Madamfluff]

Ok you will not like what I am going to say.

 

The fact that your Mum has memory problems should have alerted the medical staff that she would be in need of family support and her condition would mean that she would not be able to give informed consent to any test or procedure and in that respect your Dad should have been informed and been involved in all aspects fo her care as he should have been viewed as her carer and advocate (if thats the right word)

 

HOWEVER and its a big however there is such a thing as medical confidentiality anybody who is mentally competant (sp) has a right to stop a hospital giving out any information to any relatives and this would include partner/spouse, there has always been an IMPLIED agreement to disclose medical info to relatives but this is just an assumption that the patient would not have any objection to this.

 

 

5 years ago we found out that my Dad had been to hospital for tests and we were angry that the family where not informed, however it transpired that my dad himself had refused to allow the hospital to give out any information had they done so they would have been in breach of medical confidentiality which is why I know a bit about this.

 

You need to be clear with your complaint that the family should have been informed due to your Mums mental condition and not just becuase the next of kin was not informed as a 'matter of course'