Have rang the hospital who claim my notes are with the consultant and he is on holiday!!! However have rang the gp and eventually got to speak to him and this is what he said…I have C3 cells showing in my fluid smear test and that this is caused by a pappiloma possibly but having it in both breasts means that the affected ducts have to come out as they can be cancerous and this wont show untill they see them but if left in they will turn into cancer in nearly all cases… the consultant has stated to him that we have 17 ducts and at least 4 in each breast are affected and these with a proportion of healthy ones will need to be removed and some healthy tissue too around them to make sure a margin is taken…depending on what he finds he may take most if not all the ducts out. That’s all his letter said and gp tried to explain that it has to be done and they can not say it is or isnt cancer but they can not leave it either…he did say he will chase them down to the lymphs to be sure and that if I have any more children I wont be able to breast feed and untill it is done and i go back 2 weeks after then I wont be told any more…when pressed on a operation date he said it wont be for next 2 weeks as your consultant is on holiday but they are trying to get you in after that …but don’t worry we have a little bit of time to play with!!
It’s been 3 months since my first referal and I have had enough of time …however I have met ladies in the waiting room of the clinic who have seen the other consultant there and she has been terrible to them …so guess I have to wait again!
thanks to you guys I’m managing to cope but this waiting is hard and I still dont know of any one who has had this done??? is there anyone out there who does??
loubyjane, it’s completely pointless for me to tell you not to worry because i know you will anyway! It’s human nature. And something I’ve noticed is that the very best support you can get seems to be available right here! Having said that, I don’t have any info about the procedure but it’s likely someone on the forum will. I’m really just reminding you that we’re here; all of us, with the love and support and understanding that you need right now.
Been reading your messages and the replies, my heart goes out to you. The not knowing is a nightmare. When I was going through my “waiting” period I was advised to think the worst (did they already know) and to prepare for bad news so it was not so much of a shock and if it was anything else it would be a bonus. Sounds very harsh but I did in fact find it a help. When my Consultant told me it was cancer I wasn’t surprised, still a shock, but I suppose it softened the blow. Whatever way it goes for you, just remember there are so many wonderful treatments and lots of people wanting to do their best for you that you will be in very good hands. Remain positive and fight whatever demons there are out there, don’t be afraid to question and make sure you are happy with the answers. Ignore your parents, my mum too is a drama queen and loved all the sympathetic attention she got, it was like it was my mum going through it, not me, so I understand how frustrating and hurtful this can be. Do let us know how you are getting on.
oh bless you jannie 1 i,m so sry, but come on gather strength from us that are lucky to beat this desease, louby i dont know the answer to yours hon, but at least if they can clear them before they turn it will all be for the good hon
Thanks all of you for such support and yes here is the only place where you feel understood!!!
My husband god bless him has been and got me some sleeping pills hope to get some sleep tonight I’m so tired and school holidays are killing me…
I feel like I’m on a rollercoaster
Todays installment has shocked me to the core and I’m sorry to keep ranting on but this is so crazy I can’t believe it!
I rang the hospital today!
Spoke to the consultants secretary who informed me he is on annual leave untill the 20th auggust and untill he gets back I have been put on the 16 week wait list as they have a rush of emergency cases with him and untill he gets back they can’t prioritize his appointments for him!!! She admits I had a date for the week he comes back 21st but they have had to cancel it for now!! when I asked her to see when I was first seen she admitted it was 26th april nearly 4 months ago and tha it iis too long but untill he gets back there is nothing she can do but promised to talk to him as soon as he came back with a view to get me in asap…so still at least another 2 weeks!!!
can not carry on like this not knowing and also risking leaving “it” untreated another few weeks…so hubby said ring bupa get an appointment for a second opinion if needs be we’ll get a loan…feeling like the world was lifted from my shoulder I did so and yes they can see me in a specialist clininc tomorrow and will do fine needle thingy and bloods and hormone tests and help me decide what to do all in same day …feel fantastic now all for £250 plus a bit extra for bloods etc worth it for the peace of mind!!!
They say they wont see me unless I get GP consent…n problem as my GP is fab…urrr ring up he’s also on annual leave too so arrang to see head GP who refused point blank and made me feel like a pysco on speed …had no sympathy what so ever said he will only agree to refer me after my surgeon has told him I have to ait more than 3 weeks!!!
I begged and pleaded and to no avail I sobbed and still no way…I rang Bupa who had sympathy but still refused to see me without gp letter …so now I have to wait till 20th August to speak to consultant and untill then I have no idea how I will cope…I can’t sleep and am loosing weight rapidly …all of which I explained to this GP who said lots of women find their selves in your position and they have to cope and so will you…wasn’t bothered I was loosing weight because I am over weight due to polycistic ovarian syndrome …but although I would love to be thin again this isnt how I should do it!!!
Now I feel terrible and can not believe if I am prepared to pay that I still have no choice or controll …WHO"S BODY IS THIS???
I’m not the type of person to crumble but my goodness right now I’m wrecked!
I am sorry to read that you have had such a difficult day and are feeling so concerned, please feel free to contact our helpliners in the morning for advice and support. The helpline opens at 9am-5pm Monday to Friday and Saturday 9am-2pm on 0808 800 6000.
Presumably there is more than one GP surgery in your area. I wouldn’t hesitate to register with a different one. The one you’re with at the moment is clearly a lot less than ideal. (I’m being very restrained there; actually I feel like ranting and raving on your behalf. How dare they be so flippant with your body and your life!)
Find yourself a GP who actually cares about you Hon, and take it from there. Of course, it’s also a very good idea to take Sam’s advice and ring the helpline.
In the meantime, take as many bucketloads of love and support that you need from here. I’ve a feeling ceegra’s given the pool a massive top-up
Hang in there sweetheart; you are not on your own.
Incidentally, to find out whether anyone on the forum is familiar with the procedure, do you think it might be worth starting a new thread with “microdochectomy” in the heading?
I thought my male GP was bad on Monday, but yours really does take the biscuit. I’m so sorry honey that you are going through this. Another way forward might be to speak to your local Primary Care Trust as all GP’s are answerable to them. The person you saw today sounds totally uncaring and if this is the case should not even be in the profession.
Take loads of the love given to me this week and I really hope it helps
Hi Loubylou, what about a walk-in breast clinic to give you a quick referral for BUPA or going to your local A & E and asking to see the GP on duty at the out-patient, he may be able to help you also with the referral. Just grabbing at straws here to try and help, what about your Consultant’s Registrar, has he got the authority to sign a referral for you. Don’t give up, keep pushing until you find someone to help you. Its incredible how the so-called professionals can let us down when you need them most. Keep talking to us all as we are all on your side.
Hi loubyjane,
so very sorry to hear of your problems with the consultant and the head GP - absolutely, totally inexcusable.
I do have second hand knowledge of Paget’s disease, if indeed this is your diagnosis (I had the normal common or garden invasive ductal cancer) as my best friend’s sister had this 12 yrs ago. Luckily her husband had BUPA through his job so she got seen quickly - but she never got a bc nurse, as we do on the NHS - mine was an absolute lifeline. She had a leaky nipple in her right breast, and after a mammo and ultrasound, and core biopsy, she was diagnosed with a tumour behind the nipple and was strongly recommended to have a mastectomy, which she did. She had immediate reconstruction from her stomach which has turned into an unmitigated disaster - she has had a hernia there for at least the past 5 years and looks 8 months pregnant, but refuses to go for further surgery. Her Paget’s re-surfaced in her left breast a couple of weeks ago, and she is having another mastectomy (although I hope not another recon) tomorrow. I think therefore, if I read your comments correctly, your surgeon is recommending the best possible surgery to prevent a recurrence or metastases.
As far as the surgery waiting time is concerned, I know the waiting is hard, but I waited some 3 months for surgery from initial mammo - had a normal 3 yrly mammo in Nov 2002, got a recall letter 28 Dec 2002, got seen 13th January 2003 in a breast care clinic and had first surgery mid Feb 2003. I had already booked a 2 week trip to Florida on my own, to see friends, and my surgeon and the radiologist urged me to go - said it would do me good to relax in the sun and would make no difference to the outcome of my cancer. In the end, I decided to cancel the trip and get the surgery over with.
Are there any other GP’s in your practice beside the one on holiday and the head one? Perhaps you could ask to see one of them, and they may be more professional and caring.
Thanks ladies so very much …I am in a mess today cant think straight fell totally pathetic I am going to try again tomorrow but I am not getting much sleep and cant even speak to any one without bursting into tears…each time i try to eat I’m sick and to top it all my dad has just rang to confess mum is arranging secret family meetings behind my and my hubbys backs to discuss me…honestly what can I have a say over!!! I am so very angry and see my self really loosing it with her and the flaming doctors tomorrow!!
will ring the help line again tomorrow did that yesterday and it did help then!
I do appreciate all what you said and am very thankfull for the support…I seem to spend all my spare time reading this and will post a new thread as suggested above tomorrow…going to try some of those nitol pills hubby bought will let you know how they go
Hello Louby…try not to panic sweetheart (although like everyone on here I know its difficult)!
Have you looked at the advice on this site about papilloma in the breast? I think it is listed under benign breast conditions. I am sure when you contact the helpline tomorrow they will be able to explain in more detail, and hopefully reassure you.
(Cut and paste it into Google - or the search engine on your PC)
Hope the Nytol is working and you wake feeling calmer and refreshed. We have all been where you are now, and a lot of us are further down the line with our treatment. We have survived, and so will YOU. It’s always worse when you are awaiting treatments and results, but somehow we get through it, you will surprise yourself.
I’m so sorry for the personal hell you are in at the moment. I have no experience of what you are going through I’m afraid, but just thought I would offer my love and support to you. I too have PCOS, but affected in the reverse way (I’m a stone under weight)
Its not easy going through this with no sleep, not least because lathargy is already a sympton of PCOS so you are doing the right thing to try and ensure you are getting some sleep. And, I dont mean to call your mother, but what the hell does she think she’s playing at?? Does she not realise she is probably making this 10 times worse for you than it already is? Obviously not! I would be having words if it were me, not being one for keeping my mouth shut n’all
ONCE AGAIN THANKS FOR ALL YOUR KIND WORDS HAVE JUST GOT BACK FROM HOSPITAL AS THOUGHT I HAD CYSTITIS BUT IT IS INFACT A KIDNEY INFECTION …HURTS ALOT FEEL BIT OFF BUT NOW GOT ANTIBIOTICS IT WILL BE FINE IM SURE …HAVE SPOKEN TO THE HOSPITAL AGAIN AND THEY HAVE PROMISED TO GIVE ME A DATE IN NEXT 3 WEEKS AND GET THE SPECIALIST TO RING ME WHEN HE GETS BACK WEEK TOMORROW …SO THATS IT FOR NOW JUST GOT TO WAIT …SLEEPING PILLS ARE HELPING FEEL ALOT MORE SETTLED AND AM OFF NOW ON TUES MORNING FOR A FEW DAYS WITH HUBBY AND KIDS TO LONDON AS A TREAT TO CHEER ME UP CAN’T WAIT!! HAVE BOOKED THE LONDON EYE AND TOWER OF LONDON AND GOING TO DO SOME OTHER STUFF TOO!
Just caught up with this thread. Hope you are OK and that you have a fab time in London and on the london eye. I live in Essex so have been on the eye once, and was great. Enjoy your time out with your family and am keeping everything crossed for you.
