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Anyone wiht Nipple Discharge after NSM told possible DCIS cells

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SaraAust
SaraAust Member Posts: 22
edited March 2020 in Breast Reconstruction

Hi everyone I haven't posted for quite a while but I still check out almost daily all the amazing info that is available on this fantastic site. I had a NSM 10 months ago with no sign of cancer, we thought we were dealing with a  large mass showing as a papilloma but after the op the pathology came back showing 11cm of DCIS and 1.2cm of Invasive Muscinous Carcinoma. Long story but the surgeon not believing it to be cancer hadn't preformed the SNB at the time (had it done through the skin a week later) and didn't core the inside of the nipple. I had close margins but I was still told that chemo wasn't necessary (node negative) radiation wasn't needed and tamoxifen wasn't going to benefit greatly but it was entirely up to me. I chose not to take tamoxifen but have been constantly worried about this decision. I have spoken to a top oncologist another specialist and now have an appointment with a radiation oncologist for his opinion. My problem now is that I have had a slight discharge from the nipple of the nipple sparing side. I have had a dot of a yellow discharge on my bra occasionally and when I saw the BS yesterday he squeezed the nipple a little and a dark red bloody discharge came out and it has been sent off for testing for cancer cells. I get these results on Friday. I know that I may be loosing the nipple now due to this but I was just wandering if there was anyone out there that has had this happen and needed to have their nipple removed months after having NS????

Edited to add that I will be giving Tamoxifen a go once I know what I'm dealing with here. 

Comments

  • SaraAust
    SaraAust Member Posts: 22
    edited June 2012
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    I know that I didn't get any responses on this but I wanted to record the outcome for anyone else that may see this in the future. After further tests (MRI, CT scan and pathology from discharge) there were just too many unknowns ( the pathology showed abnormal cells, and the MRI showed another lesion in the right breast) so on the 18th of April I chose to have a double mastectomy with TEs so had both nipples removed and more skin removed than I had with the NSM. Path from left showed a 0.9mm  invasive cancer not associated with the discharge and atypical hyperplasia in the nipple causing the discharge and the right side had another papillary lesion (so the right choice as far as the BMX for me). Doctors weren't too concerned with this but Tamoxifen was a given. Because I had this second surgery with a different team and hospital they reviewed the orginal patholoygy from the NSM last year and there were a couple of new findings so the pathology was sent to another reputable Professor to review and this showed that apart from the 1.2cm muscinous cancer there was also 1cm of encysted papillary carcinoma adjacent to this making it a total of 2.2cm. There were also 3 other 1mm and a 2mm invasive areas found so it seems that  amongst that 11cm of DCIS there was a lot more going on than first believed. My new RO sat with the pathologist and went over every detail of the tissue and new findings and they both do not think that radiation is definitely necessary and were leaning towards just Tamoxifen and observation but my BS and his team are all recommending rads. This has been such a long and exhausting process and I have decided to go ahead with rads and I will go in next Tues for simulation. Having rads 14 months after original surgery isn't something that is obviously very common but I'm hoping that I am still going to reduce any possiblilty of a recurrance by doing it now and then by going on Tamoxifen and hopfully it will mean the end of all this uncertainty. One can only hope and pray! I hope everyone else is doing well in their treatment and I will continue to use this site to help guide and inform me on what to expect with each new process even though I don't often get much response with my own issues. Take care...Sara

  • Leah_S
    Leah_S Member Posts: 1,929
    edited June 2012
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    Sara, I wish you the best of luck with your treatments.

    You're right, it's an unusual situation (which is probably why you didn't have any responses!). Unusual happens, though, and I hope all goes well now.

    Leah

  • specialk
    specialk Member Posts: 9,226
    edited June 2012
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    Sara - best of luck - I read this as I also had a NS BMX so I was interested.  I was a lumpectomy candidate who self-elected the BMX so I was not too worried about facing a problem like this.  Everything under the nipples was removed, I had a bi-lat SNB, ADH and ALH in the "prophy" breast though so, like you, felt it turned out to be for the best.  I did not require rads but did have axillary nodes done and chemo.  Your experience, and willingness to share it, is important so thank you for coming back to post your results as they may be instructive for someone down the line!

  • SaraAust
    SaraAust Member Posts: 22
    edited June 2012
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    Thanks ladies, I thought it important to bring this to others attention as I didn't actually tell my BS's during my appointment  because I didn't think it was anything to be concerned about. I had noticed the yellow dot on occasion over a couple of months, I guess it depended on how light my bra was for it to show up. It was only that I had an appointment with my GP that I showed her my bra and she took a sample but of coarse this type of testing isn't thorough enough and it came back "normal". I had just gone to another BS for another opinion on my journey (as this had started back in Feb 2010) and mentioned it to him (I was still waiting on the results of path from GP) and he told me the seriousness of it and said he had never come across any of his patients that had a NSM with a discharge so he made sure I went back to my original BS for further tests. I went back and even after the path showed abnormal cells this BS still wasn't answering my questions to my satisfaction so that is why I chose to go with the other BS and I'm so glad that I did, he has been thorough and so much more reassuring. I just wanted to make sure that anyone else reading this, if they experience a discharge or have any uncertainties to make sure they don't ignore it and to make sure they tell their BS anything unusual.

    I began all this with a papilloma lesion removed from my left breast in 2010 and then a large mass formed in 6 months, a biopsy showed it to be ADH and I was told because of the size the NSM procedure was my best option and I was so glad that I was a candidate for it as I think it's such a great option for many women. Unfortunately they didn't realise that it was in fact DCIS and invasive and even though margins were clear they were still close. When I asked my BS if he should remove the nipple straight after finding this out he said it wasn't necessary and that my chances of recurrence were very small. It wasn't until 9 months later that he then confessed that he would never have given me the option of NS if he had known what he was dealing with. WTH?? One reason why I had to find another BS! He also said that I had refused rads, and when I told him that it had never been an option given to me he said that I was borderline and that it wouldn't have been a good cosmetic result with my implant so he didn't believe it to be necessary. Alarm bells were truly ringing for me then and even though I asked thousands of questions every time I went to see him these little facts only came up months after when he was ready to disclose them. I'm not sure what changed because this was even before the discharge but he must have been having doubts as time went on. I'm glad I'm with another team but as I said they know and respect him as a surgeon but I guess it may just be his communication skills that suck.

    Sorry for the long post but I just wanted to make sure others know that NS is a great option and I wish more women were offered it and that my case isn't the norm but it's still a good idea to stay vigilant. Also, I had two lesions removed from my right breast in Oct last year and an MRI this year was showing another lesion so that's why I decided to just have both breasts removed totally as there was way too many uncertainties for me to ignore and try and move on from, and so far no regrets with my decisions even the original NS as I think it was a gentler way to come to terms with loosing my breast and who knows, if I had taken Tamoxifen maybe I wouldn't have had any of these issues but no point trying to second guess so I'm trying to make sure I do everything possible to control this. Thanks for listening...Sara x

  • mrsriley
    mrsriley Member Posts: 5
    edited May 2014
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    hi there. I had a nipple saving mastectomy 10 months ago after 10cm dcis. My original symptoms was bloody nipple discharge. Now 10 months later I have bloody discharge again. I'm petrified my cancer might have come back. Not sure if it was back that it would be localised or could it spread. Can't get an appointment with breast surgeon for two weeks. Not sure if my nerves can take the wait. Can't anyone post if that has happened to them or anyone who knows about this please post

    Cheers

  • dp730
    dp730 Member Posts: 3
    edited March 2017
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    did anyone get any answers? I am 3 months post preventative nipple sparring mastectomy and I can squeeze clear liquid out of my right breast.....thoughts?!?

  • MTwoman
    MTwoman Member Posts: 228
    edited March 2017
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    dp730, this is a very old thread (original thread 2012 and last entry 2014). I think you'd get better responses if you went ahead and reposted under the forum for your diagnosis type (i.e. DCIS, IDC, etc) or the "surgery, before during and after" forum. Sorry I don't have any to help. ((hugs))

  • dp730
    dp730 Member Posts: 3
    edited March 2017
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    MTwoman... I am in BoZeman too

  • Juliec0928
    Juliec0928 Member Posts: 3
    edited October 2019
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    I’m not sure if you will even get this because your post is so old but I am having bloody discharge after double nsm surgery. Since 2017 the mri and us coming out negative but I am still worried. Did you ever find out what was causing you discharge?

    I hope it all worked out for you. It’s so unfortunate that there is no info in this topic and Drs don’t know much about it.


  • moderators
    moderators Posts: 8,081
    edited October 2019
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    Hi Juliec0928, and welcome,

    It is indeed likely that the other member will see this post. You can try to private message, as an option.

    This sounds very frustrating, and understandably you want an answer. Have you sought a second opinion on the issue?

    Keep us posted Medicating

  • Juliec0928
    Juliec0928 Member Posts: 3
    edited October 2019
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    I am in the process of getting the second opinion now. It looks like nothing showed up on my MRI again. It's good news, but it's hard to ignore the daily symptoms. I also wanted to post my situation in case someone else goes through the same thing. Thank you.

  • SaraAust
    SaraAust Member Posts: 22
    edited October 2019
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    Hi Julie, I haven't been on here for quite some time but I did get an email letting me know that this has become active again so I thought I would try and respond to your question. As mentioned above I did have the nipple removed along with more skin as the margins weren't totally clear. They did discover 0.9mm of invasive cancer in the tissue removed but I was told this wouldn't have caused the discharge. Apparently behind the nipple, the pathology showed atypical hyperplasia that may have caused the discharge. I'm not sure how serious this is in relation to the cancer returning but I am certainly glad that I had the nipple removed at the time so that I didn't have to continue worrying about this.

    As it has turned out after so many years of feeling at ease and feeling as though Tamoxifen was keeping the cancer at bay, I ended up finding a tiny "pea like" lump on the left side of this same breast just last year, that once again turned out to be 1.1mm of invasive cancer even after having had radiation to that breast after having the nipple removed. I had the surgery to remove this and once again it was 100% oestrogen positive so I had my ovaries and tubes removed and now have changed to an Aromatase Inhibitor, Aromasin to eliminate as much hormone activity as possible.

    Vigilance is definitely the most important thing you can do to stay on top of this ugly disease but always go with your gut instinct. I'd had an MRI in Sept '17 before I discovered the lump in the following March '18 but it wasn't picked up at the time on the MRI, they thought it was just blood vessels showing up on the image. It was just lucky that I felt the lump and saw my BS soon after and had the necessary tests that confirmed it was cancer, tiny, but something that still should never had appeared again.

    I wish you all the very best with this as I know it is so very difficult to go through with so much uncertainty. Good luck and please let us know how it all goes with the second opinion. I hope this has helped in regards to any questions you may have with your surgeon. Warmest Wishes Sara

  • Juliec0929
    Juliec0929 Member Posts: 3
    edited October 2019
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    Hi SARA,

    Thanks for replying. First I would like to say how sorry I was to hear about all you have been through. I'm so happy that you stayed on top of this and have successfully gotten through it all. I'm hoping you're finally done with this disease for good this time!

    I have had the second MRI come back with no changes from the last one two years ago. But a resident came in and said I know you're worried about the enhancement on the MRI. No one ever mentioned an enhancement, they just keep saying there is no mass, no evidence of cancer. While I am grateful, I can't help but think there is still something else going on. Like you, I wonder if I was a good candidate for the NSM. I had multiple masses that were small with close margins (discovered after the NSM Surgery ).

    Anyway, I am finally scheduled to remove the nipples on December 5th. I'm anxiously waiting to get a resolution to this whole thing. My BS is still somewhat apathetic and still believing that it is not cancer. She thinks it had something to do with the fat grafting I had with the reconstruction surgery. She is highly regarded in my area which is why I am not going to switch to another surgeon at this point. I'm hoping that if it is something, I'm catching it at an early stage, like you did.

    I just had a few questions for you. How long was your recovery after the nipple removal? Did you have any fat grafting with your original reconstruction surgery before the discharge started?

    I will keep posting so if anyone else goes through this at least they will have some info.

    Best Regards,

    Julie

  • moderators
    moderators Posts: 8,081
    edited October 2019
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    Hi Juliec! Thank you so much for updating us on what's going on, we hope (as you said) whatever it is has been caught early, and that your surgery can be the end of this for you! Please keep us posted!

    The Mods

  • SaraAust
    SaraAust Member Posts: 22
    edited November 2019
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    Hi Julie, good luck with the surgery on the 5th, I hope you feel comfortable with your decision and it sounds as though you are in good hands.

    I ended up having my right breast removed at the same time as I had the nipple and some surrounding skin removed from my left breast. so my recovery was the usual 6 weeks after a major surgery. I had the original implant that was put in taken out and expanders put into both breasts. I haven't had any fat grafting although that may have helped with the dents I had just above the implants that are even now still noticeable if I raise my arms.

    I am still hopeful that there will be something else I can do once this waiting period is over as I don't really want to do much else at the moment so soon after the recurrence. But one day I would like to have these implants removed and have something more "natural".

    Once again, I wish you all the best and I hope you do get as many answers as possible that will give you some peace of mind.

    Take Care

    Sara

  • Juliec0929
    Juliec0929 Member Posts: 3
    edited February 2020
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    Hi Sara,

    Sorry this took so long to get back to you and whoever might see this related to nipple discharge after mastectomy. ,

    I was supposed to have my Surgery on December 5th, but ended up with pneumonia and in the hospital in November so I had to postpone it. As you can imagine the Holidays were crazy. Truth be told, I don’t think I was mentally prepared to have it in December.

    I just had the nipple excision surgery this morning and things went well, but don’t have the pathology results yet. I will post them when I get them so that anyone else who has these symptoms may have some info from another person that could be helpful. While I am sad that I had to loose the nipples after going through the NSM 5 years ago, I needed to get a resolution to these issues after two years of these symptoms and worrying about it all the time. I’m trying to be optimistic since the MRI did not show anything, but will feel better once the Doctor confirms that everything is ok.

    Hope you’re doing well.
    Thanks for your kind words

    Take Care,

    Julie

  • SaraAust
    SaraAust Member Posts: 22
    edited February 2020
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    Hi again Julie, sorry to hear that you had to go into hospital for pneumonia at such a busy and worrying time for you. I hope the recovery was quick and you were able to enjoy Christmas and the New Year.

    So glad the surgery is over and done now and I'm praying for you that the results come back clear and you can move on and be able to relax again.

    I find that that's the hardest part in this journey, the constant doubt in the back of my mind, that it could come back or spread. That's why I haven't wanted to take any chances and not do anything that is advised or recommended to me eventhough it may not be a unanimous decision by all the experts. I just never want to regret not acting on something further down the road if something were to happen again. It's not something I dwell on constantly, but it's still something that I know remains in the back of my mind and I'm grateful that I have my team that I see every 6 months that remain vigilant and relieve any fears for the time being.

    Wishing you all the very best again Julie on the test results and please let me know and anyone else on this thread, how it all goes. I hope it's not too long a wait.

    Take care

    Sara

  • Juliec0929
    Juliec0929 Member Posts: 3
    edited March 2020
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    Hi Sara,

    Sorry it took so long to reply, but a few days after my post, I got a really bad case of the flu. I’m finally feeling better but am happy to report that the bloody discharge was from a papilloma in a duct behind the nipple. My Dr thought there were no more ducts after the double mastectomy(so she didn’t think it was a papilloma), but apparently there was still one left. I am so relieved and don’t regret removing the nipples because I couldn’t deal with the constant reminder and stress from it all.

    After two years, I finally have a resolution to this problem. I can have reconstruction on the nipples if I want to, but I’m not even thinking about that right now. Surprisingly they really don’t look that bad.

    I want to thank you so much Sara. Your kind messages really comforted me through this time. I wish you continued good health happiness going forward.

    I hope this information proves tobe helpful for someone else going through this.

    Take Care,

    Julie


  • SaraAust
    SaraAust Member Posts: 22
    edited March 2020
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    Hi there Julie, I'm so glad that the discharge has now been explained and all resolved now. The best part is that you are now able to move past the uncertainty and just put it all behind you.

    Again, I'm sorry to hear that you have been unwell and I hope that everything settles down now for you 💓

    The best thing about this site is that we can all help each other with these issues and just be there and listen to each others concerns even if there isn't always a clear answer at times. All the best to you going forward and hopefully this thread can help anyone else with any questions in the future.

    Stay well and take care.

    Sara x