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Nipple removal

55 REPLIES 55
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Re: Nipple removal

Hi Pat

Ive pm’d you

Jean x

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Re: Nipple removal

Hi everyone,

 

Thanks for all the private messages and emails.  It's not been the best year I've had, in fact this year was much worse than when I had colon cancer in 2013!  A lot of people said that RT would be a breeze but boy how wrong they were, it's been a case of if it can go wrong it has and if you can catch it I've had it!  Having said all that, and moaned about it, I'm now beginning to feel much more like me and not the sum total of any illness/medication.

 

All that was just a long winded way of letting you know I wasn't just ignoring you if I didn't respond and I'm now on the mend.  I won't be posting again as I don't want someone to ask me a question that I can't be honest about but at the same time do not want to scare anyone that's just beginning their journey, so I'll say, thank you for your support I'm very grateful for it and cheerio my friends.

 

Sending much luck and good health to everyone.

 

Take care,

 

Pat xxxx

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Re: Nipple removal

Thanks Pat. 

Fee was just short for Feenix

sending hugs back xx

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Re: Nipple removal

Hi Jean, my apologies somewhere along the way I must have just assumed you were Fee (similar to someone I know whose name is Fiona)😲

 

I had thought you would be through rads by now so am so sorry to hear you're waiting on mx, will keep everything  crossed you won't need rads too.

 

Keep your chin up, will be thinking of you, hugs xx

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Re: Nipple removal

Hi Pat Sorry you're still being affected by se’s... you seem to be having a really hard time. None of us knows how we’ll be affected by any of the treatments. I do hope they improve, and soon. The fatigue must be awful, quite debilitating. It’s definitely good to moan though. I haven’t made it off the surgical roundabout ... mx is next. I’m really gutted about it as expected to have been through rads by now, and finished, apart from tablets. I’m hoping I don’t need anything else after this but I’m not holding my breath 😳 Take care Jean... aka Fee Hugs xx
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Re: Nipple removal

Hi, thanks for the tip about the threads, some good sounding ideas which I talked through with Onc team. They agreed to some I could try but dissuaded me from some as they were unsure they would suit me - I've been a really awkward patient for them as I seem to have had most of the SE's in turn but am now starting to see some improvement.  Thanks xx

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Re: Nipple removal

Hi Fee, am so sorry it's taken so long to reply but have not been too good.  Won't bore you with the details but it's been one SE after another, am still working through some of them and the constant fatigue but my main thought throughout has been that at least I'm here and able to moan about it 🙂

 

Have been thinking about you and wondering how you're getting along, hope you're ok and well on the road to recovery.

 

Take care,

 

Hugs Pat xx

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Re: Nipple removal

Re. Rads, have you been on the going through treatment thread? You may be able to pick up some tips there.  Hope your SEs soon get better. Xxx

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Re: Nipple removal

Thanks Pat ...

sorry you’ve had se’s ...none of us know how we’ll react to rads until the time but it’s good that in a few weeks you should be feeling improved. I’ve heard the fatigue can be quite debilitating. I’m ok post op...results next week or maybe the week after ... there’s delays here still which is a pain. Really pleased you are through rads though .... ‘just’ the tablets !!

Hope you have a celebration when you feel up to it 

xxx

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Re: Nipple removal

 

Oh my gosh Fee, am so sorry to hear about your complications, hoping very much you don't have to have mx.  As I've been off line a while would imagine you've seen your consultant by now, how are things looking?  I too would have opted for going back to have more margin taken away, think you've done the right thing, not a nice thought when you think the operation is over with but always better to be safe than sorry.

 

Yes the SE's have not been good, lots of people told me RT would be a breeze but there has to be one awkward person in there doesn't there!  Actually having the RT was easy but just got so fatigued, which has been very frustrating 😠 Very sore and red outside and painful inside but staff were great and have kept checking up on me.  Been told in 2-3 weeks things will start to feel better so am looking forward to that 😊

 

Thank you for thinking of me and for the hug, much appreciated xx

 

Now it's your turn to take the baton and get to the end of your treatment.

 

Will be thinking of you, do let me know how you're getting along.

 

Have everything crossed for you, take care, sending hugs xx

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Re: Nipple removal

Hi Pat

I hope your last three zaps went ok.

Hoping you will be feeling somewhat better soon.

Let me know how you’re doing

sending a gentle hug

xx

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Re: Nipple removal

Hi Pat .. I have wondered how you were doing ..... sorry you’ve not been too well ... has it been se’s?... you’ll be glad only 3 zaps to go...do hope you recover soon. Let me know.

I got my results after MDT last week... clear margins IDC but large area of undetected dcis found  which concerned my surgeon and me... margins were deemed clear but one is less than guidelines. I had to go away and decide if I wanted a bit more excised to ensure it wasn’t lurking beyond the smallest margins or go straight to rads. After great brain strain I’ve decided to have a bit more excised to really give peace of mind ... however if more is found beyond the new margins I’ll be back to discuss mx. I’m hoping it won’t get to that but I’ve found nothing is certain. I also had micromet in one sentinel node. 

Xhugx

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Re: Nipple removal

Thanks Fee,

 

Haven't been feeling so good so not been checking messages for a while but have thought about you often. Hopefully you now have a treatment plan and possibly have already started it, really do hope so.

 

Have only 3 more days RT yay 😊

 

Please let me know how you're getting on, still have everything crossed for you 

 

Take care and stay positive xx

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Re: Nipple removal

Hi Pat

I hope your RT is going well.

I had my bcn and surgeon chasing up results at the beginning of the week but there'd been delays with many results lately. I know my results are now in the system as my OH phoned the pathology on Thursday but my nurse was then off til Monday.... drat. I’m hoping to get some info from bcn prior to MDT Tuesday.... nearly there xx

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Re: Nipple removal

Hi Fee,

 

Hope you're feeling well.  Was thinking about you and wondering if you've had your results and have a treatment plan yet.

 

Take care xx

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Re: Nipple removal

Thanks Fee 🙂

 

Sorry to hear your results are too late for the MDT this week.  While we know they tell us as soon as they can, the waiting can be quite stressful.  When it happened to me I tried to keep telling myself that at least there was an MDT to talk through the results and discuss the options rather than just one person deciding what was best.

 

Keep your chin up and take care, have everything crossed for you xx

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Re: Nipple removal

Pleased you’re getting through rt ok Pat although delays and travelling certainly make it a full day for you and hubby. Good you’re looking on the positive side and you’re part way through.

I’m still awaiting my results so have missed the MDT again.... my Mac nurse is keeping an eye out for them.

All the best for the remaining weeks left of rt .... 

xx

Positive vibes

 

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Re: Nipple removal

Hi Fee,

 

Hope you're still doing well, you're results are good and you have a positive treatment plan going forward?

 

So far the radiotherapy treatment has been fine, it's the hour drive each way to hospital and the long delays on the machines that's causing the most problems for me and hubby.  There's been delays every day, one was an hour and a half!  We're both very tired already but looking on the positive side as have done a complete week already and there's only three more weeks to go 🙂 The other plus is that I'm still so happy not to be having chemotherapy this time and I still consider myself very lucky 😊

 

Take care and try to stay positive xx

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Re: Nipple removal

Hi Pat 

Hope it goes well tomorrow and the rest fly over.

My results are not yet back so have an appointment for next week ... I’ll probably be pestering my bcn before the end of the week Smiley LOL

xx

 

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Re: Nipple removal

Hi Fee,

 

Pleased to hear you're feeling more yourself, it's amazing the difference a week can make.  If your weather has been anything like here you must have done a lot of wiifit 😊 Had RT verification appointment today and also bone density scans because I'm taking Anastrozole, first actual RT is tomorrow afternoon.

 

Hope results are good, will keep everything crossed for you xx

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Re: Nipple removal

Hope your RT goes ok .... xx

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Re: Nipple removal

Hi Pat

Im fine... felt more myself a week post op and have been out for walks (wiifit when weather has been rubbish)

Exercising fine. Just awaiting results this week.

hope you’re ok xx

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Re: Nipple removal

 

Hi Fee,

 

Just wondering how you are and, weather permitting, if you've been able to get out for a walk.

 

Take care,

 

Pat xx

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Re: Nipple removal

Oh I think you are totally different about it all when you are young! I had a scare in my 20s which turned out to be nothing but they wanted me to sign a form to say that if it was cancer then they could do a mastectomy without waking me up and I refused to sign it. I had the surgeon sitting on the end of the bed going over it all with me and I said that I would rather die than have a breast cut off and when I was 20 something I meant it!

 

What you look like and if you are attractive to men really matters then - well to me it did anyway. Fast forward 40 years and I did get breast cancer in my 60s and although I got away with just a WLE and nipple loss I had no problems at all signing anything they wanted. Plus if my husband did not like it he would get his marching orders, as it turned out he has been fine about it all but I did find that my attitude had changed remarkably as I aged.

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Re: Nipple removal

Thanks everyone. I don't know how I feel about it all to be honest, at the moment keeping my breast means more to me than getting rid of the tumour which is ridiculous, but I think my brain is keeping the thought of there being a tumour in my body out as it's all too much to deal with. I think losing the nipple is more of a deal than everything else, both for looks and sensation. Are there people I can talk to about this at the hospital? I think I'm generally just freaked out at the moment ☹ xx
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Re: Nipple removal

Hi Keeprunning I'm 43 so a little older than you but still young in breast cancer terms I had an immediate braxon reconstruction when I had my mastectomy in December (my surgeon was very understanding when I said I was freaked out about waking up with nothing there - its just something I struggled to face so she agreed to the immediate recon)- I was out and home the same day as the surgery which I thought was amazing. Take the time to explain any concerns to your team.
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Re: Nipple removal

Hi Keeprunning

I was 44 at diagnosis, so a little bit older than you but still officially young!  I had a delayed reconstruction three years after my mastectomy (I asked for an immediate reconstruction but wasn't allowed one, I think that scenario is much less common now).  I've never looked back, it made a huge difference to how I feel about myself and I'm extremely glad I did it.

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Re: Nipple removal

 

Hi,

 

Sorry to hear you're facing a mastectomy, I was fortunate to have a segmentectomy rather than full breast removal so can only comment on that.  It was a shock how much they took away as I'd thought it would be a lumpectomy but I had been made aware that I would lose my nipple.  At the time I was freaked out about losing my nipple and so much breast tissue but eight weeks on everything is healing well, I have a silicone shell to fill out the space in my bra and the lack of a nipple just doesn't compare to the relief of being tumour free.  I am a lot older than you (67) so possibly have a different outlook but don't think I would have the added stress of reconstruction, having read several posts from ladies who have not had reconstruction I think it must be a very tough decision.  Am sure you'll have a better idea of what you want to do once you've had your treatment discussion with your surgeon.  I found talking things through with someone close helped, it can be surprising what someone else can say that had not crossed your mind and gives a different slant on things.

 

The waiting for something to happen is dreadful but I found once a treatment plan was decided I felt more positive and that I was finally contributing to my recovery.

 

Sending lots of good wishes.

 

Take care,

 

Pat xx

 

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Re: Nipple removal

Hi everyone,
My appointment is on Monday when I assume treatment will be discussed in detail. The surgeon mentioned a mastectomy so I'm assuming there's no option. Interesting reading about people not opting for reconstruction, food for thought definitely. The whole thing is still freaking me out at the moment though. I'm 38 so not sure if that means I feel differently about losing a boob?? What does anyone think and are there any other younger ladies on here? xx
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Re: Nipple removal

Hi Fee,

 

Great to hear you're ok doing exercises and are sleeping ok.  It's good you feel like you want to go out, but as you say .... no overdoing it.  County hospital does not do RT so will have to travel about an hour each way but fortunately hubby is quite funny and cheerful so I think the time will go quite quickly.

 

Take care xx

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Re: Nipple removal

Pleased you’ve got your dates for  RT  Pat... hope you don’t have to travel too far....you’re right, waiting will go by quickly ... you’re nearly there Smiley LOL

I’m doing exercises ok, sleeping fine but need to start getting out for walks ... just pottered round house/garden so far although I’d better not overdo it.

Xx

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Re: Nipple removal

Hi Fee,

So pleased to hear you're doing well after your op, hopefully you're able to do your arm exercises as they really are good and quickly reduce any stiffness.  Apart from still feeling tired sometimes, I'm doing well thank you.  The lovely weather we've had the last couple of days encouraged us to tidy the garden so I've also been getting plenty of fresh air which has resulted in a good sleep at night and that's always a good thing.  Went for the RT 'set up' appointment Wednesday, where they take measurenents, and can now boast that I have three tattoos, even if they are just like freckles 😊 Have a verification appointment on 1st May (where they double check all the measurements they took) then start RT 2nd May.  Again it's that darned waiting around for something to happen but it's only 10 days so it will probably fly by - by which time you will be feeling so much better I'm sure.

 

Take care xx

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Re: Nipple removal

Hi Pat

Just to let you know I’m fine after op on Thursday.

Hope you are doing ok. Have you started rads yet?

The weather has been good so I hope you are out and about and enjoying it. 

Xx

 

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Re: Nipple removal

Thanks Pat

An iPad free break with your family is good.

I’ll let you know how I go on. Pleased you’re feeling good. 

Xx

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Re: Nipple removal

Hi Feenix,

 

Sorry for delay in replying, have been visiting family for a few days and we declared it an iPad free break!  Hope I'm not too late to wish you well with your WLE/SNB and a speedy recovery.  Sending positive thoughts to you, my op was 7 weeks ago tomorrow and I can't begin to tell you how different I feel in such a short space of time, the human body is amazing at healing and recovering 😊 My boobs rarely see the light of day too so I wasn't interested in another operation, or tattoos, either.  Thanks for your kind words about my silicon shell, can definitely recommend it 😊

 

When you're ready, and if you'd like to, do let me know how you are.

 

Take care,

 

Pat xx

 

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Re: Nipple removal

Hi Pat

I’ve had my appointments today and I’m definitely for WLE/SNB next week. Surgeon mentioned nipple recon but don’t think I’ll be interested in further ops ... I’m just interested in getting the surgery done. Anyway my boobs are under wraps majority of the time !!!

Sounds great having your silicon shell made...amazing what can be done to help and so pleased you are happy with results. 

 

Xxx

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Re: Nipple removal

Hi Blueash,

 

Found it very refreshing to hear someone accepting how they are.  I've had lots of people telling me about tattoos and created nipples etc but, certainly at the moment, don't feel this is for me.  A couple of days ago I had a silicon oval shell fitted, the lady that did this said my bra was a very good fit so to just pop it inside and not bother trying to find a bra with the inner cups to hold it.  Followed her advice and have to say it's been great as I now don't have part of the cup puckering because there's not enough breast to fill it and there is no longer any puckering showing through my clothes.  I feel comfortable and 'normal' and, as I don't tend to walk around in the nudie, don't feel the need for tattoos or a nipple.

 

Thanks very much for replying as I feel I've got someone out there who thinks on my wavelength.

 

Take care,

 

Pat x

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Re: Nipple removal

Hello,

 

I had Paget's and had to lose my nipple. The surgery was done  a plastic surgeon and was a "starfish" incision. The scar has faded to nothing, I mean no evidence of a scar at all! I am amazed, anyway I was given a nipple tattoo but it did not last! I was offered a nipple reconstruction by the same surgeon but I declined because I do not want to be pulled about any more - I now have a stick on nipple. To be honest I don't wear it! You stick it on with what looks like false eyelash glue and it will stay in place for more than a week but I have got used to the way I look without it and I only see it occasionally!! The stick on nipple is in a box in my underwear drawer if I ever do want to used it again.

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Re: Nipple removal

Hi ladies, just a quick add to all comments regarding nipped reconstruction and tattooing. I found out from a friend that the maxillo facial department make prosthetic nipples by taking a mould from your remaining one - or you get to choose from box of samples if you've had double masectomy!
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Re: Nipple removal

Hi Ann,

 

Thanks for your comments, I'm trying to stay positive about RT and keep reminding myself it's only four weeks.

 

Pat xx

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Re: Nipple removal

Hi Pat,
I, as many others have, found rads quite straightforward & apart from some minor redness &’soreness, was really nothing to worry about. As ever, the prospect is usually worse than the reality.
ann x
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Re: Nipple removal

Thanks Pat (PM)

 

I appreciate your feedback .... I wasn’t scared by your telling about your experiences but you’re right about being prepared. I will be asking questions at my planning meeting next week and I expect to be fully informed. I’ve learned a lot from everyone’s posts, and this site in general, and yes, the waiting, the unknown, has been the worse thing. Once I have surgery, whatever that entails, I will know things are moving along.

I know being positive is the way to be.

Im trying to take things one step at a time and I do have support, OH and friends (and this forum also).

 

Sending positive vibes

 

Fee xx

 

 

 

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Re: Nipple removal

Hi Deb,

 

Thanks for your good wishes and for letting me know about your RT experience as some people do like to spread 'horror' stories, am trying my best to ignore them.  Haven't given much thought to tattoo yet but will bear in mind what you've said.  So sorry to hear your BC is back, will keep everything crossed it will be a lumpectomy and tablets 🤞

 

Sending lots of good wishes, take care,

 

Pat xx

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Re: Nipple removal

Hi Fee,

 

Thanks for your very kind wishes, I've been a good girl and done everything I've been told and am recovering well thank you and the good news about not needing chemo has certainly lifted my spirits 🙂  I've found this time (and in 2013 when I had colon cancer) that the waiting around is the worst part, once you feel you are contributing to your own recovery I found I started to feel more positive.  I wrote about the segmentectomy, not to frighten anyone, just to put it out there as no-one had mentioned anything like that to me and it was quite a shock - I'm a big believer that forewarned is forearmed.

 

Have heard about the tattoos but not thinking along those lines just yet.

 

It's hard I know but try to stay positive and trust the experts.  Hope you have family or good friends around as they can be a great support, but if you don't and you feel like a rant or just to chat do please get in touch.

 

Sending you lots of good wishes,

 

Pat xx

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Re: Nipple removal

Hi PM...glad to hear you don’t need chemo and wouldn’t fret too much about RT...I was diagnosed in 2013 and had a WLE which took about a quarter of my boob off including my nipple...I found RT was a breeze...just a pain going everyday.  Over time I’ve had a nipple reconstruction which I am delighted with...also tattoo of areola (ouch). The nipple goes flat but still worth it I think and the tattoo fades so I keep getting it topped up...I’m hoping all the surgeons hard work has not gone to waste as just been told the cancer is ‘back’. Hoping it can be dealt with by a lumpectomy and tablets...glad you got clear margins first time 👍 x

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Re: Nipple removal

Hi PM

Im awaiting my planning appointment but at my initial diagnosis I was told I would have wle/rt and lose my nipple although I was told there is a very good tattooist there.

I’ve had an MRI to check size of my problem area.

I’m quite small breasted so I expect a noticeable change if I still am ok for wle... I’ll be prepared as you said you’d had a segmentectomy..

Hoping that you are well recovered post surgery.

I read the rest of your thread and am pleased to see that you did well regarding your  results. 

 

Fee x

 

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Re: Nipple removal

Hi everyone,

 

Cannot believe how lucky I've been again, result is back from USA and on the scale of 0-100 my score is 9 so I WILL NOT need chemo this time 🙂 Have an infection in breast but am now on antibiotics and, in the great scheme of things, this is nothing to keep me awake at night.  Started a ten year course of Anastrozole a couple of days ago to block the oestrogen that feeds the type of breast cancer I'm being treated for.  Due to have a bone density check soon because Anastrozole blocks oestrogen, which is needed for good bones, and start 3 weeks + 1 week boost of RT about the same time.  Not looking forward to RT as have quite sensitive skin but overall think I've drawn the long straw!

 

SIncerely hope others are getting some good news too.

 

Sending hugs to all xx

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Re: Nipple removal

Good news is nodes were clear and margin was adequate 🙂  surgeon explained that tumour was grade 3 and they would need to send a sample to USA to confirm whether or not I will need chemo, as well as the RT and hormone tablets he had told me previously I would need.  So it's fingers, toes and eyes crossed while waiting for result in two weeks.  Hope everyone is as fortunate as I've been so far 🙂  Desperately hoping I don't need chemo as when I had it for colon cancer in 2013 the intravenous one caused serious anaphylactic shock, so only had this once, and the tablets after that made me really ill.  Hugs to all xx

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Re: Nipple removal

Hi all,  am now one week on from what started out going to be a lumpectomy procedure but ended up being segmentectomy.  It was a bit of a shock to see how much breast they took away and how big the scar is but I'm finding that, at the moment, not having a nipple is now not as important as waiting to hear that, hopefully, the margins were clear meaning I won't have to go back into hospital to have more tissue taken away.  Good luck to everyone out there who is due or has gone through a procedure. Xx

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Re: Nipple removal

Hi Ali49,

 

knowing that you have seen actual breasts with created nipples and tattooed areole, and not just photos, has given me confidence that there could be options to consider.  Still waiting to hear results of last biopsies taken from the additional tumour areas the MRI showed up but I think I will still be fortunate enough to be having a lumpectomy type operation, probably going to be a large area of breast tissue taken away but as long as they get it all that'll do me.  Good luck with everything and thank you so much for taking the time to reply when you are obviously going through so much yourself xx