HELP - MTG WITH GP, ADVICE NEEDED

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I dont know if this is the correct subject heading to post this under but here goes:-

Was dx April this year, chemo, mast, rads, ovary removal, femara, herceptin.

Saw GP June 07, about something else but while there asked to be checked out as presenting with breast lump (I thought). She examined etc and said she thought it was hormonal etc, left it at that.

I went to see GP again in March this year, after having pain in the same breast, she again examined me and could feel no lump, but this time said she would send me to Breast Unit to be checked out due to family history (My mum had early stage BC 10 years ago and I had a benign lump removed when I was 21 - Im now 36)

2 weeks later was diagnosed with BC, and commenced treatment. All the way though my treatment the thing that has been constantly on my mind is why did she send me to be checked out against family history on the 2nd visit and not the 1st, 9 months before? My family history circumstances were no different. Knew I had to have this question answered, but also needed to be in the right state of mind to tackle this. This time has now come and so I requested in writing to the practise mgr last week to view my medical records, which I have done with her this morning.

To my absolute horror, the gp has not recorded the breast examination on my first visit, only the other medical condition I spoke to her about that day.

I was all ready for a fight on my hands, but didnt expect this, am absolutely gutted, that its now just my word against hers. The practise mgr has now made an appointment for me to speak with one of the practise partners (who I usually see, but was on holiday at both previous times, which is why I took appointments with the other gp).

I dont really know what I wanted to get out of this, an explanation really I think. I dont blame them for my BC, but 9 months is a long time for BC to progress without treatment, and as it had spread to my nodes (6/21) I am obviously concerned that in that time it could have been prevented from spreading to my nodes.

Sorry to rattle on, I really need some advise/comments/views from you ladies ahead of my meeting with them again next Thursday. I dont know what to think now. Once again feel very lonely in this journey, and feel that the people im trusting with my health have badly let me down.

Ness.
xx

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I think if I were you I would take someone with you. I would also write down all the points you need to cover on a sheet of paper and take that with you as well. That way you are prepared, like going for a job interview.

I was diagnosed in October 2006 and in my case I had been told 3 weeks previously that I didn’t have cancer, just a fibroid. I elected to have this removed and it was when I went for the day procedure that the surgeons found the cancer underneath; I was told at the follow up the week after surgery. Like you, I felt I needed some answers, so I met with the Consultant the following week and had my husband with me. In my case, the position of the tumour and its size meant none of the tests could have detected it, but I needed to be right about this in my own mind and the surgeon agreed he needed to gain my trust as he had to perform a further surgery to take out my lymph nodes.

Another tip I would advise is to turn up well dressed as this will make you feel a bit more confident and professional - when I went to question my Consultant I turned up in a dark grey suit, whereas before I had seen him in jeans and a top. I just figured being smartly dressed would show him I didn’t want to hear any bullshit!

Thirdly, be calm but firm. My GP wasn’t willing to give permission for my Oncologists to refer me for counselling and he was eventually overruled by them. On the day he refused I was very emotional and in no fit state to argue, so I just meekly accepted what he said and went away. It was another Consultant treating me for the menopause who thought this was ridiculous and she wrote to him saying she felt counselling would be beneficial. I then went to another GP. My oncologist told me they get problems with GPs all the time.

I know it’s no consolation, but I never saw a GP who knew very much about BC or any of the drugs I was on. Even the staff at my local Maggies Centre say some GPs would benefit from a bit of retraining when it comes to cancer as they hear this from patients who drop in all the time.

Lastly, good luck and please keep us posted.

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Thank you Cherub for your comments. I did take a friend with me today and will do again next week, and wrote stuff down but then as you will have read the conversation took a different direction then I was prepared for. I will keep you posted, but first I have to get over having my ovaries out on Monday, dont know about you but there always seems to be something else with the damn thing!!! Thanks again for taking the time to reply, have found it helpful.

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Dear Ness,

I had a 12 month delay in diagnosis.

Back in April 2002 I went to a GP at my local health centre having found a breast lump. I was told by the GP that it was merely a milk gland and went away reassured. The lump didn’t go away and I started to feel nervous about it and so I returned to the local health centre in September 2002 and saw a different GP. She could feel the lump and referred me to non-urgently to the nearest breast clinic. At my appointment in October 2002 I saw a senior house officer who gave me a clinical examination and told me I had two fibroadenomas. He did, reluctantly and at my insistance, allow me to have a mammogram but nothing showed up - not surprising in a younger woman. Despite clearly detecting two lumps and despite all the guidelines stating that women who present with a lump should receive the triple assessment, which consists of firstly clinical examination, secondly imagery (mammography or ultrasound) and thirdly histology (fine needle aspiration or biopsy) he failed to carry out a fine needle aspiration or biopsy. I went away from that appointment after being told categorically that the lumps were benign. It wasn’t until a follow-up appointment in April 2003 that I saw a consultant who did a fine needle aspiration and told me that both lumps were in fact malignant tumours.

The tumours were both grade 3 and I had lymph node involvement. I ended up having a mastectomy, chemotherapy, radiotherapy and hormone treatment. Like you I felt that I had lots of questions that needed answering. I met with the GP and other representatives of the GP practice. I also met with the consultant and the Chairman of the NHS Trust. I eventually raised an action against the Trust and they eventually settled with me out of court.

Whilst I would not recommend even considering anything involving lawyers I do have advice on any meetings you might have with the medical profession.

Make sure that you go prepared. Take the referral guidelines with you.
If you live in England or Wales these are the NICE guidelines and can be found at nice.org.uk/page.aspx?o=csgbcguidance.
If you live in Scotland these are the Sign Guidelines and can be found at sign.ac.uk/pdf/sign84.pdf.

Don’t go to any meeting alone. Take friends and family with you and ask one of them to take notes of what is said at the meeting. Ask lots of questions until you are satisfied with the answers.

Best of luck,

Sue

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I have to say that my GP was great on my diagnosis. But normally they are awful. I am just home enraged from an appointment for my much more poorly husband and they are worse than useless. Got yet another locum. I cannot believe how often we are told to go to the GP for help and all that happens is well, nothing. Thank god I never needed them while I was bad with bc, chemo , rads et al. Nor since for anything related to it. I do admire the good ones, but how some are still allowed to practise defeats me!

Go for it!

Dilys
xxxx

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Dear Ness

I haven’t posted for a long time. The reason being I’m actively taking my GP to task and I have to be careful with what I say. I was concerned about my symptoms (swelling, thickening and armpit lumps) for approximately four years. I visited my GP three times over a four year period - was told I had nothing to worry about and I was refused a mammogram when I asked. She said as I was under 50 I was not eligible for the NHS screening. I put myself into the system at 50 and was found to have localised advanced invasive lobular breast cancer. It had spread to 15/19 of my lymph glands. As you can imagine, my life fell apart and the anger I had for my GP often took over from the fear of my cancer. In many ways it still does. In the first instance, I sent a letter of complaint to the Practice Manager and requested a copy of my medical records. When I got my records I was astonished. My first consultation was recorded but not the breast part of it (like you) and that was my main reason for the appointment. My GP has never recorded that I asked for a mammogram (I asked on all three occasions) which she now denies. It’s a very difficult road to travel and like you I often think had I been caught earlier I may have had no lymph glands involved therefore less treatment and a better prognosis. I’ve been an active campaigner for the last three years and I feel I do as much as I can in order to protect what has happened to me from happening to other people. Perhaps you might like to think about making your complaint known to the Patients Association. Or you may like to ask yourself “what do I really want out of this” and then give it your focus. I think it’s a very good idea to take someone with you - get them to take notes of what is said. Top priority at the moment is yourself and your health. Don’t get too bogged down with the medical system - it’s way too upsetting - and you can pick it up at a later date once you have got your ovaries out.

Take care and remember you are No. 1.

Love

Jeannie

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hi ness, we have been chatting else where but Iv just seen this post and it caught my attention even before i realised it was you. Very tricky subject this one… And im sorry to hear what you have experienced. I think the above posts have been really interesting if worrying. I also second jeanies point about you being number one and making sure this battle is timed well with regard to your own frame of mind and progress through treatment. I wish you lots of luck and support in the decisions you make… Its ironic that i nearly didn’t get my critical insurance because of GP’s recording too much irrelevant detail and here you are facing a distinct lack of detail to point of negligence. Im particularly horrified by the above post… how can that woman live with herself flatly denying that she ever refused to refer Jeanie…
xx carmel

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Ladies, thank you so much for some very interesting reading, particularly you, Jeannie, as your situation is similar as in the lack of recording your gp visits/conversations. I really dont know how to prepare for this as if the GP in question does not remember (and to be fair it was 18 mths ago) my visit, or if she does, be prepared to face her own practise regarding not documenting the events (which I cant think that she will) I cant see I even have a case.

Like I said in my original post, I dont really know what I intended to gain from this, yes the thought of sueing has crossed my mind, but, I do have a friend who has been down this route in similar circumstances (sucessfully) and has warned me that its a very stressful route to take, and put her on anti-depressants having to read correspondance regarding her future prognosis/mortality. I am very much a need to know girl, but the one thing I have never asked and have no intention of asking is my prognosis, I really believe that having some consultant somewhere puting a span on my life would be too much for me to bare. But an apology??? More training for the GP concerned??? What if this is not the first time this has happened??? Someone has to take a stand.

Sorry waffling again…

Jeannie, your case is worse then mine, I dont blame you for taking them to task, it sounds like you have a very good case, visiting your gp 3 times without response is a complete disgrace. Understandably you cannot discuss this, but perhaps one day, if we are still posting on here, you can let us know the outcome.

Supersue - you had a dreadful time too, I cannot believe that this seems to be a common problem, congrats for sucessfully holding them to account. You have offered me valuable comments.

Hi Carmel, just letting you know that I have recvd my place confirmation for the Sheffield Forum.

Thanks again girls, will keep you posted.
Ness.
xx

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Hi Ness

It will be interesting to hear what your GP has to say. I think in my own particular case my GP was guided by her union. Remember GPs have their own union which will protect them all the way. If they think there is a possibility of things going further they contact their union. I doubt very much if my GP could remember what was said at the time and as there is no documentary evidence she can now say anything - it’s her word against mine. I do think she would have been picked up on her record keeping and I’m sure yours will too. Someone once said to me that good GPs write down everything and get caught out. Bad GPs write very little and get away with it.

Please don’t build your hopes up on apology. I really don’t know of anyone in a similar situation who has had an apology and in some cases they don’t even get truth and honesty.

I have been campaigning for better GP training for some time now. BCC should be aware of this as I have written to them several times. The campaign group that I have worked closely with have also tried taking matters further. However, breaking into the world of GPs is a very difficult one. Remember, most don’t admit their mistakes and their union is there to protect them.

Did you see the article in the Daily Mail, dated Friday November 21 - Our Cancer Shame - 10,000 Britons die needlessly every year as GPs with out-of-date training miss vital symptoms?

As mentioned previously, you must concentrate on your own health at the moment. You have plenty time on your side to take matters further at a later date. Take comfort in knowing we are here to help each other.

Carmel: I wonder about that myself. I guess she had convinced herself I didn’t ask for a mammogram and as there is no written evidence I have no proof. It’s only what’s written down in paper that is of any value when taking matters further.

I wish you well for Monday.

Love

Jeannie

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Hi Ness1,

Very good advice from Jeannie. You could always take the line that you want to prevent any delays happening to anyone else and ask what the doctors have done to prevent a similar situation occurring again. Good luck.

Best wishes,

Sue

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Hi girls,My gp put me on hrt at 35.I was on it for 10yrs,and in all that time I was never offered as much as a checkup.When I told her 6mths before dx that my breast was unbearably itchy she didn’t even examine me - just laughed and said it wasn’t a sign of bc.I went to her as soon as I found the lump and was referred to the bc clinic.It took a month and numerous phonecalls from me before I was seen.I had my dx the same day- 1cm very slow growing,very probably hormonal tumour and was given a date 4wks later for the operation.When I mentioned that I could literally feel the tumour growing I was told that because I now knew it was cancer my imagination was working overtime! After the op I was told that the tumour was 2.4cm hormone negative,grade3,full of vascular invasion with spread to my nodes and that I was very,very lucky that I’d no sign of further spread.Infact 3yrs later I found out that they had expected it to return before the end of chemo!When I queried the initial dx I was told ‘mistakes do happen!’…By the way the itchiness didn’t go until the tumour was removed!

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josyemarie, thanks for your story, did you take this further? Did you ever see your GP notes? How do you feel about it now?
Ness.x

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Hi Ness,No I didnt take it any further was too busy getting through the treatment and then just taking each day as it came. I did feel that kicking up a fuss was a bit like closing the stable door after the horse had bolted and wasnt going to help my situation- I was confused enough with other personal things that were going on at the time. As the years go by I just feel so incredably lucky that I’m still here and NED!
Josie x

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Yes Josie I can understand that. I too have had the view of its not going to change anything, but then again it might for someone else in future, and that someone might be someone close to me.

Pleased your NED, and thanks again for replying to my post.
ness x

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I was just thinking about this problem with recording our consultations accurately. I realise Jeanie has made the point i was going to make. It really is sad that conscientious professionals who make mistakes or poor judgments ( we are all human) may be sued etc when people who record so badly and are so blatantly dishonest when questioned, actually come out far better in these difficult circumstances. Its really unfair. You just never think about what is and isn’t recorded until things like this happen. It is a real wake up call. I think the support on the site will be invaluable to you ness as you make these decisions. I want to thank those of you for talking so honestly about these really awful experiences- iv learnt a lot. I’m really conscious fighting the system could send anyone into a dark place… did i imagine that, what did i say, is my memory right, am i mad?? The support of others who have shared similar experiences could go along way in minimising such doubts.

x carmel

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How’s this for bad timing.My critical illness insurance finished via the sale of my house just days before I was eventually diagnosed!!!

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Hey Ness

As you know my Doc failed to diagnose me initally the path went:

Feb through to June numerous visits and complaints re issues with breast feeding which SHOULD have passed initially. Docs little interest/consultation. quick to diagnose and prescribe.
Late June - visit with lumps. Doc 1 felt there were hormonal. I was happy with that explanation. Doc 1 = my registered doc
Late July - breast swelled and baby sruggled to feed. Doc 1 advised stop breast feeding and to see if it settled which I did.
Mid Aug - returned as problems persisted once stopped breast feeding. Doc 2 prescribed antibiotics.
Mid Aug - one week later Doc 2 happy there was improovment. I wasn’t but went along with it.
4 days later - I insist on referal to Doc 3 who agrede to refer but assured me he thought it was nothing serious and prescribed my with a 2 week course of antibiotics
10 days later - breast clinic. Urgent mamogram needle and core biobsy with results 4 days leter confirming invasive ductal carcinoma.

We were furious with the docs but all 3 had felt it wasn’t serious. My doc was genuinely distressed and assurred me he would give me as much support as I needed. I spoke to a couple of other medics and they told me BC was incredibly difficult to diagnose in breastfeeding women. I decided not to pursue as I know my doc is concientious and caring and beleive he really thought it wasn’t serious and that he would have refered me no bother otherwise. All 3 docs didn’t spot it as a problem. I also felt I needed to channel my energies in a different direction and I didn’t want to risk distress to myself by pursuing what was probably a weak case and by causing distress to others by doing it. My doctor has been brilliant and I feel I made the right decision for me. On a positive note - it’s all well documented. He also told me that he would never hesitate to refer in the future and the practise had learnt from the experience. It was important to me to hear that (he also apologised) and I really didn’t want to affect his work and potentially disatvantage other patients from what I see of his vast experience and caring attitude

I do think there is a problem with GP awareness in diagnosing cancer and was told at the breast clinic that unless docs have dealt with a BC case they usually stuggle to diagnose. I also think that this is a broad problem and its likely difficult to bring a case easily or there would be more brought. My thoughts are not to burden yourself unnecessarily and to be clear what you want to acheive. I see you have some very good advise above. If you wish for an apology I got one unpromted but my doc did accept some responsibility to me though I felt I had to share this as I was happy to accept his advise against my deeper concious advise. I don’t think docs will apologise easily as its almost an admission of unfillfulled responsibility.

Sorry for bad spelling and any garble but I’m rushing!

Let us know how you go on XX

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A couple of the GPs in my practice admitted to me they were the wrong Drs to talk to as they knew nothing about breast cancer at all. What saddens me is that one of the receptionists in my practice was diagnosed, so you’d think they would make an effort to bone up on it. When my oncologists requested I ask my GP for permission to be referred for counselling he said “you don’t need a psychologist, you’ve finished the treatment so now you just need to get on with it”. When the skin on my breast broke down post radiotherapy I urgently needed antibiotics and the weeping skin was a bit smelly - when I pointed this out the same GP said “I’ll take your word for it, I don’t want to come near it!” A bit of retraining would help I think, my local cancer centre say the same thing.

The psychologist I was referred to told me GPs in my area had a real problem with referring cancer patients for counselling compared to other health authorities she’d worked in. When my GP said no to counselling my oncologist overruled him as she thought it was ridiculous. For some reason the consultants have to get the permission of your GP here, it’s to do with them handling your everyday care in the local community. There was a big study published in Scotland by Stirling University a couple of months back and most of the GPs they monitored said they felt better letting the Consultants get on with things and they admitted that taking a step back from their patients was one of their failings, but it was to do with not having enough knowledge of cancer.

Personally, I think it’s atrocious. Nearly 30 years ago my mother died on account of a GP who dismissed her symptoms (not cancer, heart problems). She was told she had a virus, when in actual fact she was displaying all the symptoms that lead up to a massive heart attack. It must be dreadful for someone whose cancer could have been caught quicker.

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hi all, have been reading this thread with real interest for 2 reasons.

  1. i was mis-diagnosed and 2) i’m a gp! (please don’t hate me)
    i’m horrified by some of the experiences you have had with your doctors. i am well known for “over-referring” to the breast clinic because unfortunately breast cancer is common and if a lady thinks she has noticed a change the only way to be sure is to investigate. yes, there are times when it is obviously just a superficial pimple and i am confident to reassure, but if not completely happy i always referred.
    ness1, you must feel so utterly frustrated that there is no documentation. hopefully the gp will be honorable enough to admit their mistake.
    all i can say in their defence is that as a female gp you do see an awful lot of lumpy breasts and there is pressure from the government for us to reduce our referrals to ease waiting times etc. but they should ALWAYS offer to review you soon if symptoms persist and refer if they do.
    (my story, incase anyone has not got bored yet and stopped reading!!!: i am 34. saw my own lovely gp in sept who referred me urgently. at the breast clin i had ultrasound by a radiographer (not doctor) and then seen by junior doctor who seemed so reassured by normal scan that didn’t seem to examine me properly, despite my insistance that the right breast had totally changed in shape and appearance. i also emphasised my family history of bc. i was discharged but not convinced. 2 months later i paid privately for another opinion (as felt silly asking to be re-referred) and the following week i had my mastectomy! the most annoying thing has been the fact that the junior doctor wrote on the discharge letter that i had bilateral nodularity which was a blatant lie. so i totally understand why ness1 feels so angry.
    i don’t intend to complain but i know i would feel much better if i received a letter admitting that i was wrongly treated originally.
    sorry to have rambled on so much.
    gabsx
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Hi

This all makes such interensting reading and not in a good way, makes me think back to a visit to my GP, (who on “initial found a lump visit”, referred me instantly to breast clinic although convinced it was nothing to worry about due to my age 30 and no history), after initial dx had mastectomy lymph samples were clear but they didnt do sentinal node at my clinic in 2002, I cant even remember dates now but I went to GP with loss of grip, pins and needles and sometimes numbness in left hand (mast side) was told it was carpel tunnel symdrome, no examination of anything but hand, and to go back if it got worse. My next Breast clinic app may of been a few months later, lump was found in my left armpit, 17/20 nodes removed where affected, if GP had examined armpit would she of found it? and would getting treatment sooner of stopped progression??? Who knows.

Hope you ladies going to town with your GPs get what you need, we’re all human and mistakes are made, an admission/apology means alot.

Good luck

Sue xxx

Sue