Hi there
I am 30 yrs old 2 kids 5 and 7
A few months ago I started getting bloody discharge from my nipples I went to the doctors and was refered to see breast centre. After a lot of to and fro and 10 weeks I am told the results of my nipple smear test has shown cells and in both breasts.
I am now going in for a procedure and as my Breast doctor was running 3 hours late and spoke broken engllish it was difficult to get a full understanding and the things I did grasp are he is removing at least 4 unhealthy ducts from each breast and he is going to take a bunch of healthy ones to test too…he is going to cut my nipples off to go in and I might loose sensation and even the skin might get necrosis- not sure I have spelt it right! he explained this is where the tissue on the nipple dies.
He said they will chase these tubes to the lymph to see what it looks like and that untill he goes in he wont know the extent of what he will take out but he is going to take a good portion of healthy tissue to make sure …that was it really as he was busy and I felt like a empty air head unable to think…now I’m confused and I wont see him untill the morning of the operation …when that is I don’t know as he has to “fit” me in.
My questions and thoughts are many…what does any one know of this procedure does it have a name~? has any one had it ? will my very large HH breasts be a mess? what can I expect? should I be worried? is this a normal procedure? How long will it take?
To be honest I am at the “But I’m too young” stage and with 2 young kids and 1 with aspergers (type of Autism) I feel very angry at the injustice of it all and am very confused as to what it all means…
Hope some one can understand my explanation as it’s hard to understand what he is going to do.
Many thanks
Loubyjane
Hi Loubyjane
Welcome to the forums. I am so sorry to hear you are having such a troubled time at the moment. Maybe while you are waiting for the other users to reply to you post it would help to contact the BCC helpline. You can offload your troubles here confidentially and the staff who are either breast care nurses or trained staff with experience of breast care issues will listen and offer advice if required.
The number to ring is freephone 0808 800 6000 the lines being open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm. I hope this helps.
Kind regards
Sam
Moderator
Breast Cancer Care
Hi there! Thanks moderator sam I will give that a try when the little ones are out of the way.
hello again …and another thing why havnt they done any blood tests or checked incase it’s somewhere eles…I should mention 10 years ago I had cervical problems with some of my cervix took away and had cells found then …again was first smear that i had found it and was sent for calposcopy and was dealt with that day but as it all happened so quick again didnt think to ask anything then and have been on yearly smears ever since. so now I’m wondering is it related …is it somewhere eles? my arm pits have been aching all week and when I told the consultant yesterday he said “your arm pits dont ache with cancer so thats a good thing” is he right I’m worried sick and no one seems to tell me anything that I understand …even went to my g.p but he hasnt even heard back from them yet…how can some people get results and answers so quick and yet this has been going on for ages …as for the nipple smear that found the results showing cells …that was only done 3 weeks ago as nothing showed up on screening and as an after thought before discharging me the consultant said ahh well I’ll do this smear test but I’m not worried and if you dont hear from us come back in 6 months and keep a diary of the fluid and when you get it…then 5 days later all hell broke loose as I went home feeling like that was it me finnished and we went on holiday …meanwhile the results came in and they were trying to contact me…
Sorry I’m ranting on a bit but why cant they just explain things better and for my own peace of mind proove it hasnt come from somewhere eles in my body…am I going mad?
Hi loubyjane,
No; you’re not going mad. It’s understandable that you feel scared, confused and worried. I can’t give you any information but, as Sam, the moderator, suggested a call to the helpline would be a good idea.
The only reason I can’t give you any information is because I was given the all clear after just one appointment. I was climbing the walls berfore that, though, and found the people on this forum an absolute Godsend. I’m sure there will be someone on the forum who can give you a little more information but, in any case, we will all be here to give you moral support.
Take care, Hon,
beano x
Thanks beano am going to call the help line in the morning got the kids all around me today! Having a look on here and reading other people’s posts has really helped me feel less Hysterical already
You’re welcome, loubyjane.
I think it really helps to feel less isolated to know that there are others who have an idea of how you feel.
We’re all here for you.
All the best,
beano x
hi louby
sry your on here, but your in good company, and the help on here is so valuble, i am in the waiting mode at the mo, i go on thurs
that my lump hopefully is benign
it is very hard and having such young ones will only add to your stress, i,m sure someone who is at your stage will come in and help, as will the helpline in the morn
we will send loads of love your way that you will feel warm and cuddled
love and blessings
cee
thanks ceegra!! It is really nice to find such support and warmth and understanding! I’m sorry your waiting …bet Thursday feels a life time away!! thanks for sending the love and cuddles…sending them back with a smile:) How long have you known your lump? i cant even find any and none showed up for me on ultrasound either! I just want to understand what it is he has found and why they reacted like they did when the results came back and what the procedure will mean to me etc etc …having such big breasts has always been something I have loved and this is a real kick in the teeth and not knowing is driving me nuts …why can’t they tell you the truth after all this is me we are talking about…my breasts my body and my life…so how come they know and i don’t and now i have no way of contacting him and no person designated to ask until the morning of the op when ever that is! any way here’s hoping Thursday goes well…hope to hear your good news!!! lots of love loubyjane x
Hi Loubyjane
I’m afraid I don’t know anything about your particular condition as my cancer was ductal and all that was required to diagnose it was a series of fairly non-invasive tests. However, I have no hesitation in saying that the care you have received to date has been wholly inadequate. Emotional support at this time is crucial. I was lucky enough to have a fantastic consultant and breast care nurse and their support played an enormous role in helping me through diagnosis and treatment.
I would strongly advise you to try to delay your surgery until you can speak to someone who can fully explain the procedure and who understands the huge emotional impact it is likely to have on you. It is bad enough to be told you need immediate surgery because you have breast cancer but at least you know that surgery is going to save your life. As far as I can see from your post this surgery is diagnostic and it seems a lot to have to cope with if it turns out you don’t actually have cancer. If it was me I would hold off agreeing to anything until I was 100% sure there wasn’t a less invasive way to do the tests they need.
Have you thought about requesting a second opinion? Given that you had difficulties understanding the doctor due to the language barrier I would think this is something that could be arranged fairly easily. Hopefully the helpline can advise and guide you. As you said, it is your body and you will have to live with the consequences of this surgery for the rest of your life. Try and put any feelings of embarrassment or discomfort aside and do what is best for your own wellbeing.
Good luck and please let us know how you get on.
Lola x
Hi and thanks for your reply Lola!
The breast clinic are removing whatever it is they have found as to what it is I am unsure and they made it quite plain that these ducts have to be removed as what it was they did find has or will turn into cancer and untill they look at it with the naked eye they wont know and same with the other ducts that are showing as healthy …thing that confuses me and my husband is that we can not for the life of us remember it’s name or find reference to it anywhere!
As to the suggestion of a second opinion this is something I think is worth chatting to my gp over and thanks for the idea! Luckily I have a great gp and he is very helpfull so thanks for that I will call him!
Yes after reading what other peoples expieriances are like I agree my treatment has been inadequate …I found this to be the case with all the lady’s I have met at our clinic and can only think this is because it is so busy and they are very low on money…not fai is it! we are trying to find where is best area for breast cancer …any ideas any one?
Once again thanks for the support I really appreciate it!
Will keep you posted!
loubyjane
Sorry to hear that they suspect cancer or a precancerous condition loubyjane.
I’m in Glasgow and can’t fault my care at all. I do remember reading somewhere that if you are going to get breast cancer then Scotland is the place to get it. I don’t know why that is but I am certainly grateful for it. It is a postcode lottery, for sure, and very unfair.
Your GP should have a record by now about what your condition is called; if not he could probably call them for you. Once you know it should be easier to do some research on it.
Lola
Me again. I’m not stalking you, honest!
Just wondering if it may be Paget’s Disease as that can cause a bloody discharge from the nipple.
Hi Lolag!
Thanks for replying …not heard of paget’s disease …stalk me all you want any help is appreciated! Am going to call gp tomorrow! will let you know how it goes!
thanks again loubyjane
Hi Loubyjane, there is a site called "cancerbackup.org.uk " which i have found to be very very informative, whilst you are still waiting for answers or leaflets from here, (which are also excellent) you might find some of what you need to know on cancerbackup, it was recommended to me by my consultant and breast cancer nurse, the Q&A section is also good, and you might just find something that relates to your condition, in the meantime, be strong, rant and rave, and remember we are all here for you on this site and we all help each other so much
lots of love
Alison xxxxxxxx
Hi Alison …I will go look at that now thanks for taking the time to help! and yes this site does help! Just wish my blooming Mother would stop running round telling the whole world who will listen all about it …she’s one of these people who enjoys the attention …personally I don’t want it broadcasting and would rather have a bit of peace and quiet… it wouldn’t be so bad except she doesn’t ask how i feel just goes on about how it affects her …is this normal because my dad is at it too… am I selfish because I really don’t care how it affects them …I have a hubby who just lost his mum to it 8 months ago and 2 kids who need me …I can’t look after everyone! … feel like running away from it all …not that I will everyone don’t panic! but just wish I could have kept it quiet and not told any one but because of the summer holidays I had to get some one to sit with the kids each time i go as they don’t need to know… and now everyone knows that knows me and yes I might need to ask for help but I have a great husband and am a very private person and don’t like people interfering and telling me how to run my life especially right now as I have no controll over what my body produces and would like to think I’m not going to have to battle with well meant interest too… sorry bit grumpy tonight but do appreciate all the love annd support on here so thanks! loubyjane x
p.s lola and alison just looked at that site alison suggested and was reading about paget’s and altho i havnt been told thats what it is it does sound very familiar in the symptoms thanks I’m still looking but thought I’d say
Hi Loubyjane, you just look after yourself and your immediate family, thats whats important, tell your mum and dad how you are feeling, and be quite frank with them, no, they won’t like it but you are entitled to have privacy, glad your finding that site useful, i’m on it loads
Alisonxxxxxxxxxxx
Hi Loubyjane - just a thought. My consultant asked me if I wanted a copy of any correspondence which the hospital sent to my GP - can you do the same? it helps to see something in writing as it gives you time to look it up and investigate. AFter my bi-lateral mastectomy i asked and was given the three page pathological report - again i found this a great help as although my consultant and staff have been great information given verbally when you’re feeling low is inclined to go in one ear and out the other. Ring up and ask for any correspondence - you might not like what you read but at least you’ll be in the picture!! Good luck.
Sharon
Thats a great idea Sharon Thanks!