post microductectomy nipple discharge
post microductectomy nipple discharge Hope there is someone out there with some experience of this? Or some help.
or information or support, please!
I went to the clinic today and was told that the reason for the continuing bloodstained nipple discharge is that too little duct was removed at my first operation on 1st Sept this year. The surgeon has now scheduled me for a second operation, this time he plans to remove as much of the bundle of ducts beneath the nipple as he can but still with no guarantee that the discharge will then stop.
The choice is mine whether or not to go ahead. He advises me to go ahead. A second operation is much more likely to have complications and a far higher risk of losing the nipple through necrosis. An observing doctor in there with us asked exactly how much higher and was told only that if it were as much as 60 or 70 percent higher I might want to reconsider how much the discharge is a problem to me.
I said I could cope with the discharge (although it really is in every sense of the word a bloody nuisance - stopping me from swimming, from wearing certain clothes and always being conscious that it might leak through the dressing and be visible through my clothing), it was the worry that a bloodstained discharge might indicate cancer that I couldn’t cope with. He said it wasn’t cancer. All the internet stuff I’ve read says it can still indicate cancer when the discharge doesn’t stop.
How can I find out for sure? I’ve tried posting on the forum before and I’ve emailed the “ask a nurse” service but I don’t get any reply.
Someone on the Have I got breast cancer site did give me help when I first had this problem but she has cancer and I feel like I shouldn’t bother her when I apparently don’t.
No Response Hi Philomena
Sorry to hear that you are struggling to find information relating to your condition.
You say that you have not received a reply from the ‘ask the nurse’ service. It may be that the nurse is still researching the condition, but I will investigate this lack of response for you and will ask the nurse to post a response as soon as possible.
Kind regards
Online Host
Breast Cancer Care
Get to the bottom of it I had a blood stained discharge in January 2005. I was told that it was a blocked duct, and went on a waiting list for 6 months to get it removed. Great, thought that was the end of it. However, when they had a look at it, decided it was DCIS, and suggested that I had a second op to remove the area, and get a clear margin. I was told I would lose the nipple. In the meantime, I had a scan and x ray, and it turned out I had a very small cancer. Whilst it has been a journey I would rather not have taken, I feel that the problem is gone, and I can carry on trying to live my life.
I was given the choice of whether to have the very first op, or whether to live with the discharge. Just imagine if I had opted not to have the first op, I would never have known what was lurking there until a good few years time.
Please follow it through, it may well pay off in the long run.
message for withthehelpoffriends Hi! It was great to hear from you again! I appreciated your advice and that from Jellyfish first time around and went ahead with the first op but this time I’m feeling differently because I don’t trust the surgeon or his team after the failure of that operation and his determination not to give me any time to think about having to have a second op under his authority - and he wouldn’t answer my question as to how he is so sure that this is not cancer when the sympoms are exactly the same as before.
Even so, I have in fact told him to book me in for the second operation but I would love to find a way around this. This time round he is saying that the ischarge is definitely due to duct ectasia and when it becomes blood-coloured it indicates an infection which needs antibiotics asap, which has never been said to me before but which I picked up from the Internet. If there is no risk that it could be cancer then I think at the moment that I’d prefer to live with the discharge than have more surgery so soon after the last lot with far higher risks of complications. It’s just that with stories like yours and Jellyfish and others that are hinted at on the web, I feel unsafe…and as guilty as hell for moaning on about it to you!
Are you well at the moment? And what is the next step for you?
Thanks for getting in touch again, Love from P
HI I think you are doing the right thing by going in for another op. The surgeon didn’t think mine was cancer, but its not just that. He said the DCIS was so extensive that he couldn’t have got a clear margin and I would have had a mastectomy anyway. I am realyy pleased with the reconstruction, and have just had a nipple reconstruction. Stitches out on Monday.
I think I am well at the moment, although I have not had a letter for my annual check up which should have been September, The Plastic surgeon is going to sort this for me.
The thing I am struggling with is the fact that I am nearly at the end of treatment with regards to reconstruction etc. Just have to remain on Tamoxifen, 1 year down 4 to go! My emotions are all over the place.
If you read my profile you will see I have had a terrible couple of years. I don’t know if I like anything I do in my life. I am at my happiest when I am with my friends or at the gym listening to my mp3. When I am at home, my husband doesn’t chat much, (never has) and my 16 and 13 year old boys do their own thing. This is when I feel the most lonely and sad.Having said that, I know I am extremely lucky. Don’t know if I like my job either, been doing it for 23 years, although now part time.
I never thought I would feel like this. I just wanted to get back to normal.
Sorry to ramble, it just helps doesn’t it!
for withthehelpoffriends Hello again! And I thought I was feeling bad! I’d just managed to read your profile and send you a caring message back when the forum told me i wasn’t authorised or something so here I go again trying to contact you…
You send out so much positivity to other people on these forums that it sounds to me as if you could do with all of us sending you loads of it back to you right now to fill up your dwindling supply. Hang on in there - the cavalry is coming.
I’ll try and avoid any more cliches but what you have been through is more than enough to try the endurance of a camel, plus you have teenage boys in your house - it isn’t a moan you want, it’s a medal! Are you sure it is “normal” that you want to get back to?!!!
Coming to the end of the reconstruction process is bound to be unsettling - you’ve had that to focus on for so long - (but well done you for getting through it!) and the changing role of being a mother as your kids grow up is also very unsettling - that bit I can speak about from my own experience. When my kids were growing towards being independent I felt superfluous unlistened-to and totally invisible - despite my xl body and my even larger mouth…
What I did was decide to occupy my spare time by working towards something I’d always wanted to do so I ended up going to University and getting a degree. University gave me a new social circle, opened up my mind (especially to the mysteries of teenagers because most of my fellow students were still teenagers themselves), restored my lost confidence and helped me get things into perspective again. Plus it gave me a new career I loved!
Maybe you have a dream or a longing you could start to work towards - somthing you’ll really enjoy that makes you want to get up in the morning for?
In the meantime, feel free to moan or to talk about whatever you need.This forum is great and anonymous! And has a never-ending supply of huge cyberspace hugs coming your way just for you. You know what they say - you are never alone with a cyberhug… Take care! Love from P.
Thanks! Thank you so much for your reply it really touched me, and made me feel that maybe I was normal.
I think maybe I could do with a new challenge( a pleasant one!) in my life. I have been thinking of some time of a change of career. The thing is I am not really sure what I would like to do.
I have done my teaching assistant course, and some voluntary work to go along side that- not sure whether I would do that permanently. I have taken word processing exams, so I suppose I could look for something clerical, admin based. Possibly in the hospital, or city council.
I did see my consultant yesterday who was just lovely. He was going to discharge me, from the plastics side, but has decided to see me in 4 months because of the other issues going on. In the meantime he is going to refer me to a clinical psychologist to see if she can help me,
I think I do feel better than I did. Half terms over, husband back to work, he teaches. I think I like a bit of routine!
How old are your children, and what do you do now?
Look forward to hearing from you soon. x
for withthehelpoffriends Hello again!
I’m so glad you are feeling even marginally better and it’s great corresponding like this but forgive me if I don’t give too many personal details on this forum - I was searching the web via Google for anything on nipple discharge when I found the posts I’d made on this site. It spooked me because I have no real idea of how chat forums work with regard to the www.
What I can say is that I too had been working in a classroom before I decided to get teaching qualifications. I was 40 and told by the training colleges that I was already too old so I got my Uni degree and post-grad teaching cert instead - there was no age limit for those. That was a great move on my part because it opened the door to teaching on all sorts of different levels whereas college courses only trained you for specific age groups. I really enjoyed teaching and I worked in all sorts of establishments so I was never bored again! Nor unfulfilled! I’d hate to work in schools now though because of all the paperwork.
This forum cuts me off if I write long replies so I’ll try and be quick which isn’t easy using my one-finger typing method!
You say that you don’t know what you want to do next - have you tried self-help books on Life Coaching? They break the decision making process down for you and help you to realise what imatters to you so you can start to focus on that. And when you are up to it you might want to go online to mentalhealth foundation to look at their free 4 week course on self-help techniques using Cognitive Behavioural Therapy to help people manage and relieve moods of depression - give you something to bridge the gap until you see the psychologist?
For the time-being, you could just chill and not do very much at all and let your poor body take a rest after all it has been through - the old idea of illnesses requiring long convalescence is still a really good one. Be good to yourself and if you can’t take an actual holiday, give yourself a holiday at home. Best of luck! Do let me know how it all goes,
Cyberhugs from P.
For philomena Thank you for such reasuuring vibes. You have made me feel so much better.
I have heard of Life coaching, and next time I am in town, will pop into the book shop. You say you don’t work in the classroom now, is that because you have given up, or are doing something different?
I know what you mean about things coming up on google, I too have noticed that.Its quite scary isn’t it!
I would like to have a complete rest and pass my notice in BUT what if I’m not self motivated at home, I could waste alot of time. I would miss the money for the lunches and coffees that I so enjoy with my friends. In addition. I have had a fair bit of time off in the last 2 years, so I am not the best employee that anybody would want!
I don’t know how long I will have to wait to see the psychologist, but if itn’s soon, I could be back on the anti depressants!
Hope you are ok, how do you keep busy!
Love n hugs
for withthehelpoffriends Hi there!
You sound so much better- keep going. I’ve reached the ripe old age of retirement and I keep busy learning how to use the computer amongst other things. I love playing around with it and finding all the freebie mini courses it offers on all kinds of things. I’ll be a walking encyclopaedia soon at the rate I’m going (if I don’t hurl it out of the window first, in frustration when it doesn’t do my bidding!). And I use the public lending library, too, which is where I saw the books on Life Coaching. Plus there are always people wanting coaching especially before exams. I did try a Line dancing class but the rest of the group were at least 20 years older than me and at least 50 times more supple and energetic. It put me to shame! Belly Dancing was more my pace.
When everything is changing in your life, are you better able to cope with making more changes such as leaving your job, or staying put for now until you know in which direction you want to go? I’ve seen people do it both ways and it seems to me to be a question of what suits the individual. If it were me, I’d want to keep up with the lunches and coffees as long as the job didn’t exhaust me. Kids are great to be working with to keep your own life in perspective. They see everything so differently and can usually raise a smile. I have a grandson now who keeps me smiling.
As for me, I’m still struggling to understand what the situation actually is for me. If I was sure I’d been safely diagnosed with benign breast ectasia, you wouldn’t see me in another operating theatre for dust! I’ve had this discharge since March and managed to cope so I’d be prepared to carry on coping if there was no risk of cancer cells. I’ve waited in vain for any help from the nurses on this site in reply to my request but I’ve now made an appointment with the nurse at my GP practice to discuss things. She’s always been supportive but has no experience of patients with nipple discharge. Still, it might help to clarify things. I’m scared that a further operation won’t go as smoothly as the first one. Can anybody be that lucky twice?
By the way, a friend of mine has had to wait 4 months to see a clinical psychiatrist (don’t know if that’s the same as a psychologist?) and when she went for her appointment she was then given a further assessment and told she wasn’t going to be put forward for therapy because there were so many others in more urgent need. Instead, they told her to increase her dose of antidepressants and to get out each day for a half an hour walk in the fresh air. Some days she doesn’t even get out of bed let alone dressed and out for a walk. There’s a terrible shortage of therapists apparently.
I forgot to tell you that the CBT free olnine course is only available for 28 days between November and the beginning of january. If you’re interested try thewellnessshop.co.uk. They are already being inundated with people wanting to try it out.
Enjoy those coffees! Lots of cyberhugs from P.
HI Your words never cease to inspire me. You are so active in keeping busy and have such a thirst for knowledge by going to the library and using the internet. I had a look at the website, the wellness shop, couldn’t find anything about the online course though.
4 months is quite along time to wait to see a psychologist isn’t it, hopefully I may not need it by then! I just hope they don’t make you talk about things which are going to upset you more than when you started!
You really do need to sort out your situation. How about contacting your breast care nurse. It must be a real pain putting up with the bleeding, I hated it. I think that you would be fine on a 2nd operation, of course you can be that lucky twice. I can’t see how they are going to find out for sure until they do a biopsy. I was told mine was a blocked duct and I didn’t have to have the op. It was my doctor who told me to have it because I would always wonder what it was. How right he was.
In the meantime I will enjoy the coffees. Off shopping with 4 girlfriends tomorrow. I love days like that! Back to work on Monday!
Have a great weekend. xx
for withthehelpoffriends Hi!
Hope you enjoyed the coffees!
I think you have to go to the web site of mentalhealth.org.uk to get the info and passwrd to get the freebie online depression Relief course from thewellnessshop.co.uk - the course is being operated jointly.
I took a look at it and it looks great and well worth trying out. If you do what it suggests you focus on changing your thinking and your behaviour and there is no place for re-visiting the past with its painful experiences so it might suit you? It could save on boxes of tissues maybe!!!
As for me - I was never allocated a breast care nurse and whenever I’ve tried to get help, information or just some contact with someone who has been through this already, whoever is on the other end of the telephone from among the clinic breast care nurses messes everything up (loses notes and gives wrong or confusing info) that I end up so frustrated I feel like I never ever want to go near any of them again.
You say your discharge was blood-coloured? Did it ever change to yellow as mine has now done? I’ve had cytology tests on the original discharge, a mammogram and an ultrasound as well as lab tests done on the tissue and duct they removed and everything has been OK fo far. You can see why I’ve begun to hope that there isn’t any cancer lurking undetected and therefore the operation is merely to stop the discharge and they can’t guarantee it will, only that it “usually” does. But they said that when I went for the first op.
I’m hoping that if I get to see the practice nurse she can interpret the medical reports for me and either reassure me or not. In the meantime I’m always hopeful that the discharge will dry up and that will be that!
Hope work is not too strenuous - what age group are you with?
Lots more cyberhugs and love from P.
Hello again!
I got a call from the hospital today offering me a cancellation spot for that second operation. I automatically accepted it but immediately began having second thoughts. If this nipple discharge really is benign duct ectasia, do I need to rush into a second op just eight weeks after the first? Any advice anyone, please? Is it too late to postpone things?
Hi! No thats good. A cancellation, thats rare! Go for it. Like my doctor said to me, if it is benign, then how great it is to know that! If it is anything else, then you need to know asap. You have done the right thing. When do you go in?
Thanks for your previous posting.
I worked with Key stage 1 and 2. All great fun!
Have been using the computer to explore various options with regards to a new job. Nothing there yet!
Have been exploring the life coaching a bit as well, and that makes sense, also from going on this site, I see that alot of women seem disgruntled with their job and family after the treatment finishes.
I think you have so much to think about that when it all stops you analyse whats left.
Take Care and keep me posted.
xx
Hi Wihtthehelpoffriends!
Thanks so much for responding again. It’s great to know someone is listening to me.
All change again on the operation front! The appointment has had to be cancelled, but I’m really quite glad because I’ve got a lot happening at the moment, including the anxiety of my mother getting an MRSA related illness now. She’s been in hospital for months after breaking her femur. It’s very infectious so I’d’ve worried about having surgery with a wound to heal and still needing to visit her.
I had a reply from the breastcare nurse - it had gone straight into an anti-spam folder weeks ago for some reason so I’d missed it. They sound very confident about the duct ectasia diagnosis because of all the tests done and the “biopsy” so that takes away a lot of the anxiety about when I’ll get another date for the second op.
I’ve been trying out that depression relief prog but it takes a lot of time because you have to keep logging things and reviewing them. I’m more the grab a bar of choc type myself! (Hence my overweight???!!!)
I’m glad you’ve found others who have also found themselves feeling unsettled after cancer diagnosis and treatment. It’s comforting isn’t it when you’re not alone. I do think people go on to have the most amazing lives afterwards. You get to find out what your priorities are.
You do sound much calmer! I do hope things go from strength to strength for you. Keep in touch though because I can’t wait to see what work you’ll decide on! I’m coaching GCSE English tomorrow again. It was basic maths yesterday! Still, it keeps me on my toes.
Love and cyberhugs from P.
Hi! Hope things are ok with you, and your mum is doing ok. Have you heard anymore from the hospital. From what they have said, they don’t seem unduly concerned, so I think you take some comfort from that.
I’m glad you think I sound calmer, I’m not sure that I feel it. I have been really searching the internet for jobs, quite a few I would be interested in the nhs, but all Internal applicants!
A few TA jobs, but all temporary! Am I destined to get a new job?
I feel very tearful this week, its coming to the first anniversary of losing my dad, and the second of losing my brother, and its pants! I have these moments of wanting to turn the clock back 10 years, and I know I can’t.
I am trying to count my blessings in that We are a family, all be it with 2 teenage boys, who never want to go anywhere with you, don’t appreciate the food you cook, or anything else you do for them!
I feel so desperate for a new positive focus in my life, so that I can stop thinking about all the crap thats happened.
I haven’t heard from the psychologist, or appt for my annual check, but I have got the 4 month check with the Plast. S.
Sorry to moan, it helps!
Hello again withthehelpoffriends I’ve missed you! I was hoping the silence meant you were on the up and up and living a far too busy active life again to be bothered with chat forums, but alas…
It’s funny this bond between daughters and their fathers isn’t it? But I find that even though my Dad died a few years ago, he is still ever-present simply because I don’t stop thinking about him and various events or things said and done keep reminding me of him. I joke that he is more with me now in death than he ever was alive because we didn’t live that near to each other anyway and he hated using the phone and rarely wrote letters. Whisper it but I was travelling on the motorway yesterday after visiting my mother ( who is currently far worse than I’ve seen her recently) when I noticed a van with my Dad’s first name across the back. I’d been thinking about his death because he died in the same hospital. His name is not that common so it seemed a comforting coincidence to me to have it travel miles back with me!
It’s common to feel grief for a couple of years after the death of someone close and you’ve had two to cope with and when you feel raw, everything and anything can reduce you to tears. An anniversary still sends me off! Despite your friends and family (and maybe even because of your all male family?)you sound like you feel very alone? You’ve been through so much and it is very exhausting having to deal with all of that.
This could be a time to hold fire and recuperate. Spend time doing things you enjoy, relax in a spa (or make youself a home spa in your bathroom with some relaxing music and dim lighting and lots of aromatherapy). Read inspirational or funny books and get in some comforting DVDs. All your life people have been making demands on you, now it’s time to do some of the asking. Ask for attention. Is there anything you and your husband or boys could get out and do that you’d enjoy? If not, ask a friend. If others can’t meet your needs, you have to be nice to yourself.
There are lots of inflatable punchbags in the shops now it’s Christmas. Treat yourself to one of those and instead of sitting and crying take out all your pent-up frustration on that! It’s worked for me! You can still weep and grieve for your dear departed and grieve for the old you, the one that existed before all this medical treatment - you can dance around it and punch to your hearts content with the tears streaming down your face - but I’m guessing that you won’t be upset for long. Taking action whatever that action is changes your mood. If you are absolutely broke, just switch on Radio 1 and dance around the place to fast music pretending to box! Just close the curtains first so the neighbours can’t see.
And remember that there is always this chat forum waiting for you. You can moan here any time. There’s a time for everything. If this is your time to moan, just let rip! When it’s your time to move on, you’ll know.
Sending you some laughter to bring a smile, love and cyberhugs from P. xx
HI I have been visiting this site about twice a day taking comfort from the girls who are all saying that its the emotional effects of bc that are the most difficult to overcome!
I wondered whether I was getting too hung up on it, and thats why I hadn’t posted for a while.
I took your advice yesterday! I had no company for the day so… I stayed in bed till 9.15. Had a shower, went to the gym for a cycle and listened to my mp3 player which was great! Had another shower and styled my hair. Had a drink and read the paper in the gym lounge, chatted to a lady I know who was there with her kids. Came home at 12, relaxed had lunch, then did a pedicure. Finished it off with a little housework.!
Didn’t feel guilty at all!
Today I am in the process of having a new hall, stair and landing carpet laid, which will be a relief after very noisy floorboards, and those two teenage boys! Younger one off to a swimming party, so we are off for a pub meal!
Hope your weekend going well, sorry to hear your mum not been so good, it must be difficult living away. My sister found that last year, didn’t know whether to be here or at home with her family.
Take care of yourself, and keey that sense of humour, it always makes me laugh!
Speak soon xx
Lovely to hear from you again and great to know you’ve enjoyed what I call a “Spa Day”. I have one myself once a week inspired by a wonderful weekend in a health spa my family treated me to for one special bithday. Husband goes out for the day to do his thing and leaves me a day to myself. I lock the doors, turn off the phones, run a spa bath and chill. While waiting for the bath to fill, I work with a Qi Gong video doing lots of vague arm waving and things to a background of beautiful scenery and music. I like the background more than the stretches! Then I relax in an Epsom Salts bath doing visualisations or meditation, and hand reflexology. I follow it up with a shower and some skin, hair and nails beauty treatment (a girl can always hope!).
It does me a power of good and sets me up for another week. You wouldn’t catch me doing any housework or cooking that day though - it is MY day! Husband brings home a takeaway for dinner.
I know what you mean about the peace of having carpets. Next door have three boys and the noise was ear-shattering until they got hall stairs and landing carpets fitted! Mind you, it was a while before I knew because of the ear-plugs…
I’m so glad you are feeling less of an idiot for reacting the way you are. It HAS to be perfectly normal or there wouldn’t be so many others suffering emotional trauma. I’m really into the connections between mind and body and I don’t think you can cope with bc without it involving your emotions. The surgery and treatments can take care of the body but what is there in place to take care of the mind?
I came across a charity called New Approaches to Cancer who sent me out a wonderful pack of leaflets all about different ways of coping with cancer. Lots of the leaflets were copies of articles and people’s own experience. I found it enormously helpful. I’d been(wrongly I hope) diagnosed with cancer and was in shock and they sent me a little card which treated me to a hug. It seemed so caring when I felt so alone. I hadn’t found this chat forum then.
New Approaches to Cancer also do breaks and day or weekend courses for women who’ve had to cope or are still coping with bc which you might be interested in? Their place looks like a beautiful place to spend time in to help you to recuperate?
And if you enjoy a giggle, I’ve found loads of internet sites where you can download freebie jokes and cartoons. I love to laugh and this was a great find for me. I wish I’d had a computer all my life!
Hope to hear from you soon. Good luck with everything.
Love and loads of cyberhugs from P. xx