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This topic is to help people find support and information about standards in care and diagnosis. For example, you might share information about what you can expect (perhaps in terms of waiting times or information). You might also share information about taking action, e.g. how to get copies of your notes, how to make an official complaint about your care, how to change your hospital/consultant and so on.

This topic will be pre-moderated. That means that all posts will need to be approved before going live. This is mostly to make sure that our policy of not identifying healthcare professionals in the public forum is adhered to. This policy is in place to protect both forum users and Breast Cancer Care from accusations of defamation. We may review this decision after the topic has been running for a while. In the meantime, if you have any comments about it, please email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>.

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Hi, just wanted to share the advice that a friend gave me on being diagnosed. She had been through BC the year before and told me above all to be assertive about what I wanted and not to let the healthcare professionals intimidate me.
This was the best advice I received, as I was previously a bit timid with doctors. I pushed for what I wanted and managed to be transferred to the hospital I wanted, the surgeon of my choice and the treatment I decided was best for me.
I was not happy with the attitude or availabilty of new procedures at the hospital I was first referred to, and if anyone else is in that position then don’t be afraid to stand up for yourself and ask for a change.
Also you can ask to audio record your consultations, as when you are in shock you sometimes don’t remember what was said. I think the NHS is wonderful, but they are always pressed for time, so you can feel rushed. Make sure you write down your questions and ask them all. if they tell you you are out of time make a follow up appointment to finish asking your questions.
I hope this might help someone.
Oriana

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Hi Owlimott
I wanted to say you are so right about being assertive with healthcare professionals. My treatment has been dogged with problems because they failed to diagnose pernicious anaemia when they diagnosed my breast cancer.

When they diagnosed my cancer, I told them about a horrid pain in my abdomen, left hand side. They ignored this. The pain moved around and I got tummy upsets. For nearly a year I was convinced I had a secondary ulcer, and they said ‘drink mint tea’.

I managed to get them to prescribe me ulcer painkillers which worked on the pain but not the other symptoms e.g. having to rush to the loo regularly. One doc said there was no one at the hospital who could help me. A huge cancer hospital! I found another doc who referred me to the right consultant - and he diagnosed this. By that stage, I was getting dreadful pains all over my body and other symptoms and needed 5 immediate B12 injections over 2 weeks. So because I was not assertive enough, I went through chemo with even lower levels of B12 - responsible for immunity! - and other vital vits, than I needed to.

I have just booked an appointment with the head consultant and will be raising merry hell about all the worry and pain they put me through, by dismissing my pains as ‘stress’.

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When diagnosed last December, I also spoke to the breast cancer team about a constant pain I was getting under my rib on the right. I was told that I had been told very stressful news (by being diagnosed) and that sometimes anxiety can ‘create’ pains. I left it over a month and after having enough pushed for an ultrasound of my liver.

During my ultrasound I was told I had gallstones and that they were he size to cause me a fair amount of pain.

I know it’s only gallstones and I was obviously very pleased that it was not liver mets but to be told that I was pretty much making it up did frustrate me.

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I think that in the case of cancer you have to become your own body’s expert. Since being diagnosed last year, I very quickly realised that this disease isn’t the same as any other disease/condition you would see a specialist for. They (medical profession) just don’t have all the answers and base the majority of their decisions for ‘you’ on statistics generated from ‘other’ people.

My advice would be;

  1. Get as much information as you can from your bcn/oncologist/ surgeon about your cancer.
  2. Do your own research - this site is fantastic for that.
  3. Compare what you’ve been told with what you’ve found out and ASK questions.
  4. Be prepared to wait for at least an hour for any appointment.
  5. Remember that the professionals are human beings to, they make mistakes like we all do. Expect mistakes to be made!

I feel like I’ve taken responsibility for my cancer. I found it, I pushed and pushed for it to be diagnosed telling several different professionals that I wasn’t happy with their benign opinion.

I cannot fault the NHS. They have been efficient, courteous, informative and supportive. There have been countless human errors - you will never eradicate that risk, but you can reduce the damage of these errors by being vigilant and realising that at the end of the day they don’t have all the answers, but you (for your body and life) do.

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I’m considering taking my situation further. I was told in June 08 that I had a cyst after having ultrasound and mammo. No biopsy or aspiration was taken. A year later the ‘cyst’ had grown and moved closer to the surface. I was referred back to hosp to be told I had grade 3 cancer with lymph node involvement. It seems unlike;y to me that this would develop in a year. I suspect the original ‘cyst’ may have been cancer. I dont know how the decision to biopsy or not is made but feel that if this was done, treatment may have been easier and less severe. What really upsets me is that as I thought it was a cyst I probably left it longer than I should have. Totally stupid.

Julia xx

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Rancidtart, I feel desperately sorry for you. Today the News features more comments from GPs about ‘time-wasting’ people. So nice ordinary trusting people live longer with their symptoms rather than disturb the health professionals - and the results for you are devastating. Yes, I would think like you and take it further, though it takes years and is stressful to pursue any complaint. Very best wishes to you.

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I’d like to add a further remark about standards. I’m asking for a second opinion on something. To do that, I need my notes and scans. There are 2 places that have kindly said they will look at my stuff and consider my case.

My hospital - large, one of the richest, prestigious - has said there will be a charge to me of £50 each time - so £100 just to supply my notes.

I’ve looked this up and the NHS can make a £10 charge - £50 is the max they are allowed if the scans etc are old which mine aren’t.

I find it really spiteful just because I am persisting in asking for a drug they don’t want to give me but I believe will work - backed up by all sorts of research evidence. I am fighting for my life here and entitled to a second opinion on the NHS.

When I told the secretary - who said she was told to make this charge - she suddenly said, oh well then we won’t charge you.

So why say they were going to?

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I went to see a “breast specialist” in 2008 at the age of 36, and was told there was absolutely nothing wrong with me and to take evning primrose oil. This was on the basis of such a quick feel, frankly I have had a more thorough “breast examination” from pervs on the train, I insisted on an ultrasound and was told I was wasting NHS time and money, 3 weeks later I was found to have an invasive tumour which had already spread into a lymph node.

Quite honestly if I was as incompetent as the “specialist” I saw, I would be sacked. (I am a teacher.) Is there a legal reason why we cannot name these “healthcare professionals”, as it is quite literally a matter of life or death if we are seen by someone competent or someone clueless.

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Dear starflower,

I have copied a paragraph from the original posting by Leah (Community and Social Media Manager at Breast Cancer Care),which I hope will help explain why we do not allow names of health professionals to be used:

"This is mostly to make sure that our policy of not identifying healthcare professionals in the public forum is adhered to. This policy is in place to protect both forum users and Breast Cancer Care from accusations of defamation. We may review this decision after the topic has been running for a while. In the meantime, if you have any comments about it, please email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>. "

Very best wishes

Janet
BCC Facilitator

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It’s all very tricky. I have been to a solicitor, who thinks i might have a case. but I dont know if can go through the process. I spoke to another doc and she said that cysts are not always biopsied or aspirated. As the cancer grade, 3 it could have developed very quickly. The interesting part is that it developed under the ‘cyst’, which was pushed towards the surface and that i had some cancer in the skin on the surface. It does add weight to it being cancer all along.

To be honest, I consider myself lucky. It wqs only in one lymph node, I onlt needed a lumpectomy and I’m near the end of treatment. Could have been so much worse.

Julia xx

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Dear starflower

I just wanted to clarify: we may review the decision to pre-moderate this bit of the forum, but the policy about naming healthcare professionals is unlikely to change. The UK’s libel laws are very strict and, as the publishers of comments on the forum, Breast Cancer Care can be held liable for things people post on the forum (as well as the person who actually writes the post).

There are private ways of contacting each other, whether that is by private messages or other off-forum methods, so we would ask everyone to respect the guidelines and not identify healthcare professionals in the public areas of the forum.

I hope that makes things a bit clearer. Please do feel free to send me a message if you’d like more clarification.

best wishes
Leah

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I was very happy with the team I was treated by,I couldn’t have wished for better or more caring professionals. However, I felt my GP surgery could have been better at the end of my treatment. My Oncologist asked me to get my GPs agreement so I could be referred for counselling and he refused me, saying I needed to accept the fact I’d had BC, had finished the treatment and get on with life. Have to stay I was absolutely stunned by the attitude, given the fact I’d been through a very difficult four months on Taxotere (extreme side effects, which resulted in me being taken into hospital isolation 10 days after the last dose). Another Consultant I saw for menopause issues wrote to this GP recommending counselling and the letter was filed marked “no action”. When I went to the surgery for medical certificates etc., I often got the impression the letters from the Consultants were not being read as nobody ever seemed to know what stage I was at with treatment, what the drugs were or anything. When I was on Herceptin I was asked if it was a “one a day tablet”, yet it was never out of the news at the time. The GP seemed stunned when I said it was like chemo - 3 weekly and intravenous.

I then went to see a woman in the practice, she is the first GPs wife and she said “I’m sure there has been a huge misunderstanding” about the counselling issue(well she would say that). She is supposed to be the specialist in female diseases and menopause, yet I have to keep correcting her - sometimes she questions what the oncologists have told me by saying “did they really tell you that?” and raising her eyebrows.

This particular practice used to have a brilliant reputation with a waiting list as long as your arm to get in. They seem to have lost the plot after GPs were able to negotiate their contracts with the government and their reputation has plumetted (I know a District Nurse working from another surgery who has told me this). My SiL is recovering from a huge op for bowel cancer and has a wound scar that is not healing - the same surgery have refused to dress it every day, saying a visit to their nurses once a week is enough. 3 weeks ago it became really infected and she was sent away with a bag of dressings and told to attend to it herself. The District Nurse I know is my SiL’s cousin and she is dealing with the wound discretely as a favour!

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My hospital - large, one of the richest, prestigious - has said there will be a charge to me of £50 each time - so £100 just to supply my notes.

I’ve looked this up and the NHS can make a £10 charge - £50 is the max they are allowed if the scans etc are old which mine aren’t.

I find it really spiteful just because I am persisting in asking for a drug they don’t want to give me but I believe will work - backed up by all sorts of research evidence. I am fighting for my life here and entitled to a second opinion on the NHS.

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I am so sorry so many have had bad experiences with their treatment. I have had wonderful treatment right from my GP, to the breast surgeon, the hospital where I had my mastectomy, the different hospital where I had my chemo and rads and where I am nearly halfway through my herceptin.

Everyone I have dealt with have made this as comfortable as it is possible to be.

A local charity has now given me a counselling session for free, with only a 2 week wait.

Just thought that some positive posts would be useful too.

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I can only commend the NHS for their organisation, care and treatment of my BC.

Systems put in place by my local NHS meant:

I had mammogram & Biopsies on the Monday Pm and had results on the Thursday.

On the Thursday I was given my results, I met with my named Surgeon and met my named BC Nurse specialist.

I was also given at that time the date (two weeks later) for my Surgery as well as appt letters for each of the various scans and tests needed as well as the name and appointment to meet my oncologist.

Due to my cancer and it spread the “order of my treatment” changed.

I was issued with information for me and my family (gratefully received and compiled by BCC)at my local hospital.

The staff who performed the scans,blood tests, porters, reception staff and all nursing staff, radiotherapy staff I cannot fault, extremley courteous, mindful, happy and caring staff.

The treatment plans were explained to my family and me, the oncologist/surgeon/BC nurse specialist patience with me was nothing short of saintly (with me not being able to take in too much and questioning everything they said to me).

When I asked could I meet with the surgeon who was to perform my mastectomy as well as the plastic surgeon an appt was duly and timely arranged.

I had the same staff deal with me and if not, I was informed.

Its a pity but I understand why I cannot mention the absolutely fabulous staff at my local NHS Trust based in the north west of England.

The only failing within the NHS lies with my local GP surgery who over a period of 3mths and after seeing 3 diff GPs who all in my notes make ref to BC and fam hist and me not happy as change in size. texture etc they failed to refer me on. When one did it was with a non urgent referral.

We live in a face paced world and yes these people are highly skilled, intelligent members of society with whom we place so much trust. I questioned the last GP and demanded a mammogram, this saved my life albeit I waited 7wks for the appt, only because the GP had noted a non urgent referral!!!

We are all human.

We have a wonderful service available freely in this country, I am sure for some, like me there are aspects not perfect but some countries dont provide such world class treatments.

We are quick to forget that staff such as those in radiotherapy often end up working late to accomodate all patients needing to be given treatment that day.
The oncologists, surgeons, nursing staff who listen to patient after patients concerns, that must be soul distroying for them to hear day in and day out often negativity.

They really are extraordinary people and still manage to make us smile and provide a world class treatment and give us a chance at survival.

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I just wanted to add my praises for the NHS team that have dealt with me so far. I was sent very quickly as an urgent Two week rule referral. I had my op 5 weeks from finding the lump and they sent me for a further biosy as the first came back negative in my nodes but my consultant wasn’t convinced. - this meant I only had to have the one op in the end which was better for everyone.
ALL of the people I have come in to contact with - senior consultants to district nurses and students have all givin me time when I needed it to both explain what is happening and to allow me to express my emotions (Blub all over them sometimes)
The ONLY failing so far - as alkso mentioned by others has been my GP who I called to get another prescription for pain killers & sounded like a gibbering idiot on the phone. he clearly didn’t know what to say to me when all that was needed was an “I’m so sorry to hear you have been diagnosed with breast cancer. You know we are here for you when you need us!”
To be honest I haven’t had great faith in him since he saw me for an exam when pregnant & was very off hand so I will ask to see/speak to a female doctor in the practice from now on. BUT this is a large medical centre style practice so I would have expected hime to have come in to contact with others in the same situation. - I absolutely put it down to this individual but GPs may just need some more training if others stories are also anything to go by - diagnosis mainly & pushing to refer as I am sure some women are just relieved when told "it’s probably a cyst " and may not push themselves to explore further out of a combination of fear & trust.
There should be a policy of automatic referral for ANY lump found then they wouldn’t be put in a position of making judgements some of them are clearly not qualified to do.

As I say overall & so far I ma VERY impressed with the system - we shall see as treatmnent continues

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Ditto to most of the above, breast care team, hospital staff etc fantastic, except I found the oncologist very off hand and frankly patronizing. But then I’ve only met him once, and I am nearly up to chemo 4! It amazes me that so many people see their oncologist every time, but mine doesn’t want to see me unless i have major problems. All the minor stuff, side effects etc is dealt with in a phone call to the chemo nurse.

But then I don’t particularly want to see him. At the planning appointment for my chemo, I asked about side effects, obviously it was on my mind. His answer? “you’ll be fine.” and that was it, end of discussion.

I then had to decide whether or not to go ahead with chemo, as stats were borderline. I asked about long term side effects. “there are none”. Well I know that is not true, as Epirubucin is well known for potentially causing heart problems, as I have found out, and there is other stuff too.

I have got more info from this website than I got from my oncologist, and I know that BUPA is paying him personally nearly £400 for each chemo and I am not even seeing him…!

As for GP’s I pick who i go to see depending if I want their opinion or if I know what i want,. I’ve lived here 16 years and had children here so know the practice quite well. There is one GP who didn’t know I shouldn’t have blood pressure taken on the side of the axial clearance, and I had to tell him I needed a blood test when I had a temperature during chemo! And I had to ask him to wash his hands!!! But I go to him as he is always free (wonder why?) if I just need a referral or a sick note etc. But there are those that i trust, including one lady doctor who has had breast cancer herself.

Rusty

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I want to say how wonderful my treatment team has been too. Mammogram on Wednesday, letter on Friday for recall appointment on Monday. Scan and biopsy results one week latter and appointment with surgeon on the Thursday, when date for my op was given. Just a slight delay in referral for radiotherapy, but I phoned and asked about it and my appointment was through in a couple of days!
My one concern was with the doctor who put in the wire for my op, he didn’t speak to me once and, even with a local anaesthetic, he really hurt me. There were four nurses in the room and it was them who told me what he was doing, it was the worst part of the whole procedure!
I have found, in my experience, the NHS do a really wonderful job and the vast majority of staff are very caring and supportive.

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JO68, you have been lucky in having such wonderful, caring staff. I have experienced a few of these. However, my BCN was so appallingly uncaring and lazy that I just don’t bother phoning her if I have a concern.
Yes, we are all human but I for one work EXTREMELY hard at my job, often in challenging situations and often working late. I am unfailingly polite and caring. I simply ask the same from ALL NHS staff, and in a “caring” profession I do not think that is a big ask.