How has anyone managed to be re referred?

[sandra774]

Hi

Just got back from clinic and now have to accept that all is OK.

Her colleague couldn't see the indentation and this consultant made a big gesture of squinting her eyes saying she couldn't see it and I had to point it out - apparently I'm seeing a natural dip (odd that it's not always been there and was arguing with her that it's new!) but it's not a symptom of cancer? So I'll just watch it, ever widening, I presume (if it continues to do so) and HOPE it is alright

Wouldn't do biopsy as "there's nothing to biopsy" - I thought the punch biopsy was of the skin where eczema was? She did point out a thick lump on areola but she knows (without knowing where the eczema was exactly) that that's what the eczema caused!?

Apparently 1000s of women have lots of symptoms involving 1 breast/nipple and it's nothing - just one of those things.

Mammo and U/S clear so that's it all OK - wonder if those who were subsequently diagnosed following their clear tests agree

The appointment seemed to be largely about defending her colleague and unit.

Unfortunately at this moment in time, short of actually feeling a lump (hopefully never happens) I won't be returning to my GP with any further breast problems if they occur - which is wrong but it was so hard to go to GP THIS TIME don't think I could do it again - we're told there are things to look out for other than a lump and when you find one of them you should be treated as thoroughly as those with a lump (as many on this site are) instead I've ended up feeling what was the point of all this - may even change my log in name to timewaster, cos that's what I now feel I am.

Although I was 50 in April 2010, my 1st mammo screening won't be til 2012 (Sept to Nov) so I'll wait til then and hope they've got it right.

Will continue to drop in on this site cos I don't think the eczema, burning pain, itching and indentation will completely go so will get peace of mind and support from here - looking for someone who's had similar and 10 years (5 or 3 years?) down the line is still OK

Sandra x

[sandra774]

Hi Nigela and Kim

Thanks for your posts

Had my letter today (funny how quickly it's come) apparently I'm complaining of dimples lateral to right nipple areolar complex - I thought I'd noticed a possible symptom of breast cancer (1 long thin indentation with a round top) and duly reported it to GP and was referred.

The report says nothing found on clinical examination which I'm taking to mean she couldn't see it (nor did she spot the eczema on left one!) - not that I'm surprised she didn't see anything the speed at which she checked! - which I'm not very happy about - how could she say it disappears when stretched if she couldn't see it in first place? and I can't make it totally disappear when stretched - trust me I've tried, plus if she can't see the indentation why suggest that weight loss has caused something she basically is saying isn't there?

The only good thing is I know that 1 of the white spots is a 6mm intramammary lymph node which hasn't changed in 3 years, presume the 2nd spot has gone as not mentioned.

Feel even more unhappy now and a complete timewaster, maybe it's their terminology but complaining of makes you sound like a real moaner especially when followed by nothing found - in a way I'm thinking roll on Tuesday but really feel quite dispondant and tempted to cancel - I won't but it's such a battle.

Any way I'll give an update on Tuesday if I don't post before - I see your both still lurking around looking for peace of mind then as indeed I am? Have your symptoms eased or worsened? - it is a worry

Lots of Love

Sandra X

[Guest user]

Good luck for tuesday Sandra
Wish I had been given an ultrasound too!
Nigela x

[Guest user]

About time, bet it was your complaint that made them sit up lol , well good luck for tues and push for an ultrasound etc, it's your body and you know when you don't feel right, hopefully they'll treat you with the respect you deserve.
love and best wishes
Kim xx

[sandra774]

Hi

I've just had a phone call from Breast Unit and mammo is OK - I said I was still concerned about the indentation and she's offered me an appointment on Tuesday back at the unit and hopefully will be able to discuss my history and will get a clear reason for my problems from eczema to pain to indentation!

Think it was my email of complaint that's got me this response and it's wrong to have to do it but IF it gets some answers so be it(can't be too optimistic cos of what's happened to date)

She did say they like to get feedback even negative cos it helps them improve so we'll see what happens next

Sandra X

[Guest user]

Hi Sandra was just thinking about you today-that is disgraceful. I do hope you get your results soon.
Do take care
thinking of you Nigela x

[Guest user]

Hi Sandra
Hope you get some answers soon, it's disgusting the way you've been treated etc being left on a limb so to speak.
Did you do your complaint ?
Kim xx

[CheshireCheese]

Hi Sandra
Perhaps you could try getting your BCN to chase up results - being on the "inside" of the system they can sometimes do better than we can.
Sarah x

[sandra774]

Hi

It is now 3 weeks since my mammogram, 5 weeks tomorrow since I went to the one stop clinic and over 6 weeks since I saw my GP and I still haven't had my results!

I emailed the breast unit in the end and they wanted to know more details and after explaining everything it wasn't their department I needed and referred me to PALS? The lady there is now trying to help get my results as I've been unable to tho I have left messages.

Feeling really fed up now and confused - on the one hand it'd be good to get a clear mammo but then the only explanation given for the indent was my weight loss in Feb and that doesn't sit well - it didn't appear til end of August and I haven't lost more weight since then (unfortunately) and the indent is getting wider!

I do use this to get my frustrations out, hope no one minds.

Best wishes

Sandra

[sandra774]

Hi

I really didn't think it would happen but it seems like I have been "forgotten".

Its 2 weeks since I had mammo - when the reassuring (not!) radiologist, having ascertained twice that I wasn't going back upstairs ie to the one stop clinic, said that if I hadn't heard in 2 weeks to ring in case I'd been forgotten.

There was no post when I got home tonight so I guess I've got to ring tomorrow (no reply tonight!)- quite unbelievable really especially when I was talking to a lady who'd had a breast screening mammo on a Monday afternoon a few weeks ago and the following Friday she'd had a letter to recall her back and 8 days after 1st appointment she'd had a 2nd mammo and thankfully it was OK - so they do read the mammos quickly in this area and I'd have thought a mammo because of sympoms should be viewed quickly!?

I did just try to do the customer feedback form on the clinic's site, which took ages to do cos I didn't want to miss anything out and 5 times I tried to submit it but it just kept saying there was an error sending it!

Last time I didn't get my results thru (it was 4 week wait then - same now since 1st appt at clinic!) and I had to ring (took about 5-6 calls!)and that was how I found that the 2 spots on the mammo were tiny benign tumours from the BCN I spoke to. The letter when it came was one long sentence saying mammo was clear didn't even mention U/S - mixed blessing really good it was clear but never been totally happy about lumps being benign as no biopsy - strangely enough it wasn't til that telephone conversation that my worries/doubts set in - often think I maybe better off without the knowledge that there are 2 tiny unbiopsied benign tumours in my breast, but then I'd still wonder what the white spots on mammo were/are - they may have gone for all I know!

Sandra X

[Guest user]

Gosh sorry you have to wait Sandra-no word here yet-just hope I have not been forgotten.
Ours should be a one stop clinic but they were closed down a while ago because they had made mistakes with alot of women's mamos and had to redo 100's-doesn't give you confidence! Know of someone in bad way because she was missed.
Been told if they want to do about triple test could be 3 or 4 visits!
Nigela x

[Guest user]

Hope they don't make you wait longer than 2 weeks that would be awful, it's stressful enough without the long wait.
It's a pity they couldn't have let you go to the clinic today for the result's.
kim x

[sandra774]

Hi

Nice you remembered - thank you.

Nothing to report at this moment, had mammo and now have to wait for radiologist to look at images and get back. She was a bit vague as to how long this would take - if I haven't heard in 2 weeks then I'm to give them a ring in case I've been forgotten - HER WORDS.

Think she's used to people coming to her as part of the one stop clinic and normally I'd have gone back there (upstairs) from her for consultant to decide on next move so don't think she was too sure what would happen next - she checked 3 times that I hadn't come from the clinic or that I didn't have to go there today! Letter just said appointment for XR mammogram both.

So fingers crossed and more waiting.

Hope your break did you some good and have you booked your appointment yet Nigela?

Sandra

[Guest user]

Good luck for today Sandra will be waiting to hear how you got on
take care
Nigela xx

[Guest user]

Hi Sandra

Good luck for today , please let us know how you get on.
Kim x

[Guest user]

Hi Sandra
back from hol and still worrying. Goodness knows how long apt will take to come. Sorry to hear about your worries too. Will message more tomorrow.
Nigela x

[Guest user]

Thankyou Sandra your words are so true and it's how i feel and the itching especially in public lol yes had the too.
Do you know we sound so similar spooky,i will try and phone the helpline next week.
Thankyou for being so supporting.
Kim x

[sandra774]

Hi Kim

It can help to ring the helpline - I have a couple of times and it can be reassuring in the short term (til something else happens and the uncertainty begins again)

I've been lurking on this site for 3 years, which as supportive as the site is I sometimes think what am I doing I've got the all clear - and most of the time I believe it - there's just that niggle that won't completely go away.

In fact I wasn't too nervous the 1st time I had problems with the eczema - my worry set in the day I had to ring and get my results (because the letter hadn't come!) and was told I had 2 tiny benign tumours As I hadn't had a biopsy I thought how could they be sure - when I've questioned this I get told because they are! It was after this call that i found the site!

As it's a new breast clinic, I thought it'd be a through investigation (as the leaflet said) and I could have closure, quickly.

Like you the sympoms have never gone away completely - the eczema reappears quite often in the exact same places, sometimes the itch is unbearable (often comes when in public lol) and there is a continual dull heavy feeling - up til now all only in the right breast.

I said to my sister once I'd have a funny sort of reassurance if the other one had a symptom but now the eczema's come there I'm not terribly happy about that - some people eh!

My thoughts are with you hope the call to the helpline will help

Sandra x

[Guest user]

Thankyou for replying and i will try and phone when no one is about in the week, my husband is off aswell so it might be difficult.
Kim

[Jo_BCC]

Hi Kim,

Could I suggest that you give the helpline here a ring and have a chat with one of the breast care nurses. Calls are free, lines open Mon - Fri 9-5 and Sat 9-2.

Take care,
Jo, Facilitator

[Guest user]

Mine was a one stop clinic but like you didn't get the checks it say's you should have because 1st visit just had a mammogram got told it was fine couldn't see the dent in my nipple ,i was pleased it was clear but got told it was muscle pain.
2nd visit the bcn apologised that she hadn't satisfied my concerns but understood them with my auntie having bc, she checked again and noticed the dent i said i wanted an ultrasound and she agreed but the doctor who did it hardly spoke to me and i couldn't understand why they only scanned the right side ? i didn't have problems with the left then but you'd have thought on the safe side we'll do both and especially having an enlarged milk duct on the right but no he didn't and when he told me what was wrong and said i'll write to your GP and left the room, so i said to the nurse who was in the room do i see the bcn now and she didn't know so she told me to wait in the waiting area and the bcn saw me and explained the findings not much info really and that was it, i didn't even get a discharge letter for the reception so i'm non the wiser.
It really does help writing it down and having someone who does understand how we feel,i can't talk to hubby about it sometimes i feel he doesn't care that's just the way he is , my son knows i went both times i'm really close to him he's 24 my 3 daughters don't know my eldest would drive me mad lol she's a worrier but means well.
I'm off work this wk so i might go and see my GP.
best wishes kim

[sandra774]

Thanks Kim

I totally understand where you're coming from and to be honest am feeling a bit fobbed off by the clinic - obviously it's good that I'm being told it's not BC, but at the same time don't feel sufficient investigation is being done a ONE STOP clinic where I didn't have a proper consultation or mammogram - have to go back nearly 2 weeks later!

As the leaflet said the 1st step was an initial consultation with the BCN to go thru general health and breast problems - I'd written it all down in date order along with worries and questions but this part didn't happen.

Part of the physical exam should be sat up, then with arms up - didn't really happen - told her problem was more visible with me sat up so she had a quick look then - but says she can't see indentation - yet says it disappears on being stretched!? (I can't make it disappear). I forgot to say (tho wasn't given chance to) about eczema that had appeared on left breast and as she didn't mention it I presume she didn't notice it!

Sometimes I think there is thickening but not sure - GP concentrated on that area and it was a bit tender as she pressed but didn't think there was anything to worry about - consultant didn't even feel in that area, nor underarms and up to collar bone.

I had an ultrasound before to check out the white spots on mammo (which that consultant on looking at image seemed to think I'd be recalled - but wasn't!) and she took it from the side with me lying on my side - this on just ran it over top of breast very quickly.

Not at all as thorough as I would have liked and it would have been good to have had time to talk things thru.

Feel I'm wasting people's time and I think like you I'd find it hard to go back if a further symptom were to develop - tho as you say we're told to know our breast and report a change that is new to you - which doesn't just mean lumps!

If I'm still left with my bit of a weight loss 5 months ago causing the problem I don't know what I'll do (especially as it's getting bigger with no further weight loss occuring) - just hope they'll be a benign but definite cause.

Sorry for the rant but it does help to write this down

Wishing you well

Sandra

[Guest user]

Good luck Sandra for next weds hope it's good news.
I fully understand about the different symptoms etc, as you know ive been twice and second time i had an ultra sound and got told ive got an enlarged milk duct right side and didn't show on the mammogram , the bcn couldn't explain why ive got itchy boobs or the burning tingling feeling but she did say i could go back if anything changes in which they have now the left one has the burning, slighty red around the thickening and itchy symtoms plus a lot of thickening around the nipple and in one part it feels lumpy but i think it's more to do with the thickening but i'm a bit reluctant in going to see my GP because they might think i'm being paranoid.
I'm sacred that they are missing something but feel daft in worrying if there's nothing else there, it's hard to put in words sorry but i bet you understand what i mean ? you hear so many not dx properly,if i did see my GP i was even thinking of asking to go to another hospital so i don't have to see the same nurse again cos i feel foolish but like someone said on here somewhere we know our own body's and mine isn't right but then i keep thinking what if it's hormonal with my age but i'm not having sweats etc, i do suffer with cysts on my ovaries but they are ok so don't need removing, i had an hysterectomy 13 yrs ago.
sorry for ranting lol Kim x

[sandra774]

Hi Nigella

Hope you've managed to have a good holiday - it's a pity you're appointment couldn't have been before you went.

That is so wrong that you'll have to be rereferred cos you were away - the letter's I've received have all said that if you can't make appointment please ring to change it - even if you weren't away it's not always possible to make the appointments they give you!

My mammogram is for Wednesday next week and although I'm hoping to here it's all OK, the consultant did say the radiologist will have to see it and he will decide if there are any changes that will need biopsing so I don't really feel I'll know much more.

I totally understand how you feel, having been back a couple of times with new symptoms and being told well your mammogram was OK and when I went with the hot burning in the nipple she said that as there was no lump It was fine - I've since learnt that not all cancers present with a lump and like you have never understood why a new symptom didn't mean another referal - hence my subject title.

Hopefully all will be well when you finally win your battle to get an appointment - a battle you shouldn't have!

All the best

Sandra x

[Guest user]

Hi Sandra
sorry to hear you still not much further. tho at least ultra sound was ok-which I have heard can show u more than a momo.
Had a bad day too-as my referral never came and I go away tomorrow-GP was told to tel them this-however I rang them up and I was t be seen next Friday! 17 days after seen GP! I said I was away for a week and now apparently I have to be re referred when I get back-no how crazy is this-My GP is not allowed to request another appointment for me till I am actually back-no way could I get them to make one just for the following week!
They were closed down for a while as alot of women who went there had to be recalled as they had been given the all clear when it wasn't-fils you with alot of confidence! My Dad's poor neigbhour is now at a ver bad stage as she was missed.
I am convincing myself that i can see a gland in my neck! I keep thinking why then didn,t the gp who saw me 20 months ago send me to the clinic if they have to send you if you report with a new symptom! Then I went last Aug -so again why didn't that one send me-no I have to wait till I am in pain and worried to death about it!
NIgela x

[Guest user]

Hi Sandra,
I am sorry to hear that you had such an unsatisfactory appointment, after all that wait!
I do hope that the mammogram appointment comes soon. they did make quite a bit of fuss about the change in my breast from one mammogram to the next - making me wonder if they would have dismissed my tumour if it had shown up on my first mammogram! So do be reassured that the mammogram will be looked a very carefully.
Hopefully, you will soon have your appointment and then good news to follow. The waiting is awful.
Wishing you all the best.

[sandra774]

Hi

I've just got back from my appointment and almost feel it was a waste of time in a way.

The leaflet from the hospital said it'd be a triple assessment - examination, mammo/ultrasound and biopsy if anything found with results given that day although you may have to wait for some.

So having got very nervous I at least thought I'd know something definite today.

However a quick physical exam followed by an even quicker U/S led the consultant to BELIEVE everything was OK (indentation disappears when stretched which is a good sign!)

I was then asked to get dressed and wait for a referral for a mammo to be sent - she did say she'd like to see if there are any changes to the mammo from 3 years ago (the 2 tiny unbiopsied benign tumours) which for the last 3 years is what I've needed to put my mind at rest.

So having got worked up, I'm still not completely in the clear and I'd have thought that as a 50 year old the mammo would be no 1 test method.

I think unfortunately the problem was that my initial appointment was changed from 9.40 to 1.00 and I think they'd overbooked- I wasn't asked thru til 1.35, then had to lie with the gown on til 1.55 and driven 15 minutes home to be back by 2.25, so all very quick.

So very disappointed but holding on to the fact that she seems to THINK all's well but not the final peace of mind - hopefully that's to come!

Sorry for the frustrated long post, but if you're going to a one stop clinic that offers all tests in one to me is what you should have.

Sandra X

[sandra774]

Hi

Another quick update - I've got my appointment at the breast clinic on Thursday.

Hoping my next update will be a quick one stating everything's OK! - a long week ahead with everything crossed, might get uncomfortable (lol)

Thanks to all for support and interest.

Sandra

[Guest user]

Hi Kim
I too have the bad burning pain-did you have any tingling before that?
waiting to finally be referred even tho mamo came back as ok in June. The pain started last week It wakes me up in the early hours.
Nigela x

[Guest user]

I'm glad you finally went back to your GP, it would alway's be on your mind, good luck for your appointment and hopefully you won't have to wait to long.
Please let us no how you go on.
Kim xx

[sandra774]

Hi

Just to update.

Went to GP this morning and although she said she couldn't see either the dimple or the indent running down the side of the areola and she did locate what I wondered was thickening, which she dismissed as breast tissue has referred me to the breast clinic as an urgent referral!?

She said she felt it isn't likely to be cancer as she couldn't feel any tethering, connection? etc.

So fingers crossed I'll finally get peace of mind or if not at least I'll know and can get treatment.

I do wish they didn't give mixed messages - the initial discussion after examination went from do you want to come back in 4 weeks to see what happens to I'll refer you as urgent quite quickly - I am glad of that in way tho I need it sorted.

Many thanks for all responses received to date - they were very helpful and warm wishes to all.

Sandra

[sandra774]

Hi

I'll be booking appointment tomorrow, have been asking friends who go to the surgery who's the best to see about breast problems and who they feel is most likely to refer on and have 2 possibles.

I'm sure (hope!) it's nothing but at least in the next few weeks i should know for sure

Once again thanks for all your support, wishing you well

Sandra

[Guest user]

Hi Sandra
I agree you need referring back to the hospital you need to know one way or the other, i was similar to you the pain the burning etc went to the breast clinic in may had a mammogram it was clear got told it was muscle pain ok so i went away not convinced but thought well they are right but it was nagging away in my head so went bk to my GP because my dent was getting worse etc and she referred me bk as not non urgent they saw me 3 wks later and it was the same BCN she was lovely and this time she noticed the dent and i asked for an ultra sound which showed ive got an enlarged milk duct, she said the dent will get worse and the left side could go the same, it's down to my age (45) and apparently smoking can cause,ive not smoked for 14 yrs, so hopefully yours will be good news aswell, ive still got all the pains etc and the odd doubt but i'm trying to be positive, i really hope you go and see your GP asap.
Best of luck and please let us all know how you get on.
Kim xx

[Guest user]

Hi Sandra,

Glad you've made the decision to go back. Stick to your guns and I hope you get the peace of mind you're hoping for.

best wishes, Jan xx

[Guest user]

Hi Sandra

Just caught up with this threat and so pleased you have plucked up the courage to go back to your GP and demand a referral. Don't take no for an answer and we are all behind you. There are far too many GP's who think they know more than they do about bc - as well as many good ones also, but it is your body and you know best when there are changes than need assessed.

Good luck, I do hope it is nothing but getting it checked will give you much needed peace of mind.

Love Anne x x

[sandra774]

Hi

Thanks everyone.

I'm quite happy (well happy's probably not the right word - I know I must) go back to GP and needed to know if I could insist on a referral if GP doesn't suggest it and you've all been very helpful and given the confidence to deal with this - this time tho she'll probably refer me now I've sought this info!

It is a worry that lurks around and you need peace of mind and it's one symptom too many in only the 1 breast.

Wishing you all well

Sandra

[yvoyvo]

Tell your GP you want referred to the breast clinic at your local hospital if he is not willing to refer you, you want to speak to the doctor in charge of the practice, if it still doesn't happen go to the hospital and speak to the nurses you will find support. Hope it works out ok

[scottishlass]

Hi Sandra, If it was me I would ask my GP to refer me to the nearest hospital to have it checked out by the specialists who deal in Breasts. GPs don't know everything and if it was me or my daughter I would want to get it checked out properly. It may be nothing to worry about by why worry at all when we have such experienced specialits at the hospital. Let us know how you get on. Val

[Guest user]

Dear Sandra

I think you should go back to your GP and say you will not be leaving until you are re-referred. This is your life. You may, of course, like to ask if you could see a GP within the Practice who has a special interest in breast cancer (if there is one) and has up-to-date training etc. An average GP practice will only see approximately one new case per year and they should not be taking risks. Mine did (I was refused referral three times over a four year period) and I suffered with a much more advanced cancer. I do not want to hear of this happening to anyone else.

Everything may turn out fine for you but you must put your mind at rest. The longer this goes on the more concerned you are going to get. Never think you are paranoid. You are just looking after No. 1.

I hope all goes well for you.

Jeannie

[Guest user]

Hi Sandra,

Sorry to hear you're having a hard time being heard. You are absolutely right that changes in your breast should be investigated. GPs don't know everything. You are entitled to ask for a second opinion if you are unhappy with your treatment (and I would be in your circumstances).

I was very lucky. My GP referred me when I noticed changes in my breast even though I had no lump. Nothing showed up on a mammogram either but the surgeon I saw recognised the symptoms of my (very rare) cancer and ordered an ultrasound and core biopsy which confirmed my diagnosis. My GP had never heard of Inflammatory Breast Cancer but at least she trusted my judgement and made the referral which meant I got treatment very quickly.

It's still very unlikely you have cancer but the breast clinic may be able to get to the root cause of your problems.

Don't be afraid to make a fuss and Good luck.

Jan xx

[Jo_BCC]

Hi Sandra,

After reading your post could I suggest that you give the helpline here a ring and have a chat with one of the breast care nurses. Calls to the helpline are free, 0808 800 6000 open now (Mon-Fri 9-5 and Sat 9-2)

Take care,
Jo, Facilitator

[sandra774]

Hi All

I've noticed that some ladies have been told they're Ok from mammogram/Ultrasound etc but have then subsequently had more tests.

Do you have to insist on being referred back to breast unit or have your GPs just referred you.

My story is (try to be brief) that 3 years ago had eczema on 1 nipple, referred to hospital had mammogram (showed 2 white spots) and u/s and eventually received a letter saying mammogram clear (no mention of U/S or spots).

Eczema recurs, only in same breast always in same 3 spots - use cream prescribed (hydrocortisone) and after a long while it goes.

Last May had burning pain in same nipple went to GP - no lump so apparently OK!? - pain coming from inflammation in/near breast bone. Since then a lot of the time I have had a dull, funny ache in that same breast, and occassional burning sensation - occassionally using Ibuprofen if it gets too bad.

Couple of months ago developed a dimple/indent in same breast GP says probably scar as I have a scar from spot close to it (I don't think scars just appear out of the blue and I am now very familiar with my breast!)

My big worry now is that there are 2 indents in the areolar (of same breast!)- the top 1 is small (1cm) round, the 1 below is about 1cm wide and extends down by 2-3 cms it sort of makes it look like part of the areolar has disappeared.

In my mind I think any new symptom should be thoroughly checked out but since my 1st referral I don't seem to be able to get another 1 (I sometimes feel I'm being paranoic but would like peace of mind) - I know I have to go back to GP but would like to know my rights in case she still won't get it checked out - can I ask and insist on a referral?

I'm now 50 and unfortunately won't be called for 1st screening until last quarter of 2012!

Sorry its long - hope someone can help

Sandra