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not fully satisfied with being discharged - age?

16 REPLIES 16
nic71
Member

Re: not fully satisfied with being discharged - age?

I work in an outpatient clinic and at the end of each consultation the doctor dictates a letter to be sent to be typed up by the consultant secretary, and sent to the gp practice. The letter from the consultant to the gp normally takes about two weeks to get to the gp after your visit ( or that is the case in the hospital I work in). If your gp is saying they have not recieved a letter, phone the hospital and ask for the consultants secretary,and tell them what the gp has said ,and request that a further letter be sent to them.They may say that the gp has to request a copy ( some hospitals have different policies). There is no reason why your gp couldn't contact the hospital and then phone you with the results. Most hospitals have the test results in a central computor data base which can be accessed at any time in a matter of minutes. As lulu34 says maybe it's time to find a gp practise that you feel more confident in and comfortable with.Just one doc who knows you well to go over it and through it with you.
Nicci x

Lulu34
Member

Re: not fully satisfied with being discharged - age?

Would def say chase it up and get pathology... Ifa cyst was aspirated and the fluid was clear they would have been able to tell that without sending it to pathology so there must have been something different about it.

And would maybe look at changing your GP too... Doesn't sound very helpful.... The guidelines are if yo have a lump then your refer you don't try and guess what it is as even the professionals who feel lumps all day still get it wrong sometimes.

Lulu x

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Remix.. please please dont leave it as it is.. Demand that yr GP referrers you back.... better to have piece of mind and a def. answer than worry yourself. You have the right to ask these questions and dont feel shy about asking to be tested again or for a second opinion.... I wished I had. xx F1Fan

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

hi Sophie
Please do not leave it as it is.
Ring up the consultant's secretary and give details and say that you want some answers. You can also request a copy of your notes; so you also need to do that as well.
I hope that everything works out well for you and please do the above. In the best scenario it will give some closure and you can then move forward.
lots of love xx

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Hi guys just thought I'd give you an update. Our local surgery have a new system where you call for an appointment and a doctor calls you back to discuss your symptoms before giving you an appointment. When I spoke to (a different) GP on the phone he said that they hadn't been sent any notes on my visit to the breast clinic (in October!) and said it was "probably" just a fibrodenema. They didn't even have anything to say that I had an aspiration done. I said I was still worried about my other lump and he said well I better come in then and see my original GP.

So just came back from my appointment. This GP clearly had no access to what the clinic had thought about my lumps as he had to ask what they'd done. I feel once again I wasn't pushy enough - I asked for a diagnosis and he said oh theyre both just a benign lump (in fact he said it was a cyst but surely if it was a cyst when it was aspirated they'd have said that?!). I just feel a bit frustrated that I think I'm wasting my own and the doctor's time and not getting anywhere at all. I am just going to keep an eye on it, but try and be positive and put it to the back of my mind. Thanks for everything again girls. I know most of you wish you had the luxury of worrying about a benign diagnosis! 😞 Sorry to complain to you all.

Hugs to everyone.

Sophie

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Sorry for not replying sooner - thanks for all the advice 🙂 I am going to book an appointment to see my GP and try and get more detailed information next week/try and see if I can get a second opinion on the second lump (which I think has grown).

Hugs to everyone here!

Sophie

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Dear Sandytoes

Many thanks for this. Sorry I am not very computer literate - how do I get in touch with Lorna45?

Over the time, I've been in touch with six other ladies who have all been misdiagnosed - mainly lobular and inflammatory. Three are no longer with us. All could have been if referred at an earlier stage. The problem is that the system does not allow us to get a fair hearing. I've been down the NHS complaints route, the Scottish Public Services Ombudsman and the General Medical Council. All have been a complete waste of time and energy. I want to see GPs getting better training but if the system doesn't recognise that GPs are making mistakes, I don't know how this can ever be achieved. In fact, I would rather have it that women under age 50 could 'self refer' as we know our own breasts best and when changes occur that concern us.

I hide myself every October - I find it too distressing. My awareness didn't get me into the system for further further investigation. But getting GP awareness is difficult and I doubt very much if any charity would be prepared to stick their neck out.

Keep well.

Jeannie

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Hi Jeannie,

Makes me so cross hearing stories like you. I was dismissed on numerous occasional too. It's all well and good having awareness campaigns, but if we then get dismissed by the GP or surgeons then what's the point!!

Lorna45 has a similar story to you and was misdiagnosed for a year or so with lobular and is also from your area I think...Might be worth getting in touch with her.

x

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Dear Sunnyday/Stellam

Sorry, I was going to put this under a new subject - haven't started a posting for so long hence I've forgotten how to do it. Eeeek...

As a four years misdiagnosed lobular lady I can relate to both your messages. I don't post much because I'm actively campaigning + trying to take my case to law. The guidelines for lobular at the time of my diagnosis (2005) were totally inadequate and my GPs refused to refer on my three visits. Firstly, saying the swelling and thickening under my right armpit was merely an extension of breast issue and secondly, my armpit lumps were the remains of a viral infection. There was no mention of armpit lumps in the guidelines at the time despite these symptoms being mentioned in all breast cancer awareness leaflets. I would like to protect other women from falling down the same black hole and am actively trying to take this further. Stellam - I would be interested to know if your cancer was lobular? Having travelled this road for some time now, I am very concerned that lobular and inflammatory breast cancers are not getting recognised by some of the healthcare professionals.

Jeannie

Lulu34
Member

Re: not fully satisfied with being discharged - age?

Remix I think if it's abnormal you have every right to ask in what way it is abnormal.... Normally you are told it benign such as a cyst or fibroadenoma... Abnormalities tend to be something between benign and malignant.... It could be something like atypia in which case a follow up may be recommended....

You can ask for a second opinion but perhaps you can get a copy of your pathology report.... Maybe they have said abnormal when they really mean something benign... It is very unusual to get breast cancer at your age but it's not impossible so do push to get it checked thoroughly.

Best of luck

Lulu xxx

stellam
Member

Re: not fully satisfied with being discharged - age?

Hi Remix
I was told on 3 occasions that my concerns were unnecessary and that it was just a thickening of my breast tissue, twice by my GP and then by the BC consultant.
It was only my persistence that made them take a FNA and biopsy they then diagnosed me with BC, it had also spread to my lymph nodes and i am convinced that if I had been more persistent right at the beginning this wouldn't have been the case.
My advice to you is to persevere until you are 100% happy with their diagnosis, after all it's your body and your life.
Big hugs
Stella

sunnyday
Member

Re: not fully satisfied with being discharged - age?

Hi Remix,

Several people have offered you good advice already, but if I could just add my story. In 2006 I was told the lump that I had found in my right breast was a "benign nodule" - I was never satisfied with that description. I always felt I needed a name for it. I worried myself over the years about this so much that I suffered from headaches and dizziness. The dizziness I later found out was a form of panic attack. In 2009 I was again told it was a "benign nodule", but a year later I was diagnosed with Lobular BC. I worry about the delay in diagnosis, and wish that I had been more forceful in my numerous trips to the Doctors between 2006 and 2010, when all they seemed to want to do was give me antidepressants. If you are at all uneasy about the diagnosis of the one lump and the dismissal of the other, don't make yourself ill like I did - seek a further opinion/further diagnostic tests. Good Luck and I really hope I haven't frightened you X

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Hi Remix

Like the others have said, you really need peace of mind. You GP should have full details of exactly what was found when you were examined. You could, of course, ask for a copy of their correspondence but sometimes it's difficult to understand. If it were me, I would make an appointment with my GP to discuss exactly what was found on examination and take it from there.

I hope all goes well.

Jeannie

nymeria
Member

Re: not fully satisfied with being discharged - age?

Hi Remix,

You really need to know the answer to this for peace of mind. I would go back to your GP to discuss it and ask for a referral back to the breast clinic. Another alternative is to ask your GP if he/she could speak to the breast clinic and get a clear answer on why you have been discharged without the other lump being properly investigated.

Nymeria x

Guest user
Not applicable

Re: not fully satisfied with being discharged - age?

Hi Remix,

Hopefully it is nothing sinister or they would have called you back. But it is horrible worrying and not knowing so if I were you I would demand your notes to find out what they think it is - and if they don't still have your notes, ask to be referred to the breast clinic again as there is still something there that is worrying you.

x

Jo_BCC
Member

Re: not fully satisfied with being discharged - age?

Hi remix

Welcome to the BCC discussion forums, where I am sure your fellow forum users will be along shortly to support you through this.

While you are waiting for replies, could I suggest that you give the helpline here a ring and have a chat with one of the staff. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2.

Take care,
Jo, Facilitator

Guest user
Not applicable

not fully satisfied with being discharged - age?

Hi girls,

I don't know whether or not I'm being paranoid so I was just wondering if anyone had any advice for me. Here's my story:

I found a pea sized hard lump deep in my left breast in May 2011. While I was obviously a bit worried I was busy with final year university exams and just put it down to being paranoid and ignored it.

During the summer I was moisturising and noticed a pronounced small lump on the centre of my chest (kind of "cleavage" area) - its almost visible under the skin. Anyway this lump I decided was too obvious to ignore so I went to the GP who referred me to the breast clinic. The surgeon seeemed more concerned about the deeper original lump than the more superficially obvious one and sent me for an ultrasound. The ultrasound tech pretty much dismissed the lump near the centre of my chest and focused on the other one and kept repeating "I'm not convinced.." (I was too terrified to ask what of) over and over. Then she called the consultant - and kept mentioning that I was "only 21" who also took a look and said that he thought it should be biopsied.

I had FNA of the left lump. A week later I was told the cells were abnormal but showed no malignancy, and that I was being discharged.
I was not given a diagnosis of what the lump is and there is not going to be any follow up. I was 21 at the time of all this - I have just turned 22. I am concerned now that I think potentially my age was a big factor for the decision to discharge. I also am uncomfortable that I still don't know what that lump is - the male nurse who discharged me made almost no eye contact and I was actually unsure whether or not he realised I was the patient and not my mum. It was really quite odd. I left feeling more uneasy than anything else.

There's no history of BC in my family but my grandfather and uncle on paternal side both had cancer. Very few women on my mother's side. Should I just leave it - the lump is still palpable? I don't want to make a fuss over nothing - if (in worst case scenario) it was something bad, I presume it would change and eventually show itself in some other way?