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!
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)
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.
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.
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
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
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.
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.
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
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
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.
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
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
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.
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.
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
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!
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