DCIS in Left, now DCIS symptoms in right 16 months later

Options
Vantila1
Vantila1 Member Posts: 6
edited March 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello to anyone reading this. In 2017 I was diagnosed with high-grade micropapillary DCIS in my left breast, upper/outer area near armpit. I had a lumpectomy and radiation therapy that ended September 2017. I was 42 years old. Now, 16 months later, my right breast is leaking the same sort of mix of clear and dark inky fluid from the nipple (the same way the DCIS was found in the left at my very first ever mammo). I am fairly certain that some sort of recurrence or perhaps a new BC has started. If this is the diagnosis, then my question is: have you had a masectomy for DCIS and what should I expect for a second diagnosis?

I'm 43 now and have been a type I diabetic for 31 years. My oncologist did not put me on Tamoxifin or any other hormone drugs because of my diabetes (causes insulin absorbtion issues). My previous DCIS was ER+/PR+/HER2-. Got a 3d mammo scheduled for 1/21/19 at University of Michigan and will know more then. I'm going to insist they spend more time examining what I used to call my "good boob" than my left which had the initial dcis diagnosis.

· Share on FacebookShare on Twitter

Comments

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    I am sorry you are dealing with more symptoms. Hoping you get answers soon. If ti is in the other breast, it would not be a recurrence, but a new primary. If that is the case, you'd need to decide between lumpectomy or mastectomy. Hoping it is something unrelated to breast cancer. Either way, you should consider the full panel genetic testing due to your young age. Cancer tendency can come from both sides of the family.

    · Share on FacebookShare on Twitter
  • MBPooch
    MBPooch Member Posts: 229
    edited January 2019

    Vantila1 - I was diagnosed with grade 3 DCIS last year and opted for a BMX. I'm a bit of a hypochondriac and knew for my piece of mind I wanted to be as aggressive as possible. I had also had benign findings on the non-cancer side so just wanted to be done! I already had implants at the time of diagnosis and was able to go the direct to implant route. Having the reconstruction done at the same time as the surgery was a bonus for me. Something to ask your plastic surgeon if you're a candidate and it's something that would interest you. All things considered, my recovery was fairly easy.

    · Share on FacebookShare on Twitter
  • Vantila1
    Vantila1 Member Posts: 6
    edited January 2019

    Thanks to MBPooch and KBeee for responding. I had both a 3D mammo and ultrasound at U of M Hospital in Ann Arbor last week. Both came back negative but the technologist saw that my right nipple was leaking during the exams and I am now awaiting a call for an appointment for a clinical exam (they want to see the leak happening). I've taken some video with my android phone just in case the leaking doesn't happen then. It is now leaking a half-a-pea sized inky and clear mixed fluid every day, sometimes several times a day.

    The mammos and ultrasound show I have extremely dense breast and I had a benign fibroidadenoma removed on my right 16 years ago. I've been told such fibrocystic breast changes are an indicator for higher BC risk and makes mammo and ultrasound difficult for diagnosis.

    I'm kinda just devastated. I am scared too. I'm trying not to let my frantic, worried Google-fingers freak me out any more than I already am.

    Thanks for listening and caring for a stranger.

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    Hopefully they'll do a breast MRI. With nipple discharge, if breast issues are ruled out, they may want to look into pituitary issues...likely not the culprit if just one breast, but something to keep in mind.

    · Share on FacebookShare on Twitter
  • TB90
    TB90 Member Posts: 992
    edited January 2019

    Vantila 1: As difficult as this is, try not to assume the worst. Nipple discharge can be caused by many things. Papillomas are common, non cancerous explanations. I had discharge from both nipples. Coincidentally I was dx'd with DCIS in my left breast, but the pathology report found a papilloma unrelated to DCIS. The right breast is healthy so far and discharge discontinued eventually. Discharge from a nipple is far from a breast cancer dx. If we tend to develop papilloma s, then we may tend to develop them in both breasts. Your original dx if DCIS may have been totally unrelated to the symptom of nipple discharge. Simply a coincidence. Our breasts tend to be busy. Have it thoroughly checked out, but try not to go there yet. I know this is difficult. Still lots of reason to hope for benign. ((((Hugs))))

    · Share on FacebookShare on Twitter
  • Vantila1
    Vantila1 Member Posts: 6
    edited March 2019

    I went in for a MRI with contrast and a 4mm area of focus lit up very quickly just about smack in the middle of my right breast. Radiologist said it is poorly defined and non-mass enhancement. I really didn't hear anything else she said once she told me an MRI-guided vacuum biopsy must be done to confirm her initial findings. The oncologist called shortly after that and began with telling me "I'm so sorry..." You know you're in potentially some bad trouble when the oncologist starts a telephone conversation like that. The oncologist said that we need to figure out exactly which type of cancer it is and then create a plan for treatment once the biopsy results come back.

    Biopsy scheduled at U of Michigan Hospital for March 21. Wish me well, ladies, because I'm really hoping for a mistake and that I'll get the "all clear" (blessed words!), but it doesn't seem that will happen.

    I turn 44 in April...I ain't young anymore, but I am too young for this...

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited March 2019

    I am hoping that it comes back non cancer, but either way, I am sorry that you are dealing with this. I do understand the stress of it all. Sorry you have to wait so long for the biopsy. That rots. Mine was scheduled 24 later.

    · Share on FacebookShare on Twitter
  • blah333
    blah333 Member Posts: 270
    edited March 2019

    My mom went through this! DCIS then mastectomy, radiation, then DCIS occurred in the opposite breast 5 years later. She had to have a mastectomy and re-do her reconstruction or whatever adjustments were made after her first surgery.

    This influenced me, who got DCIS at an age 15 years younger than her diagnosis (35 & 50) to just get a bilateral mastectomy right away. My DCIS was not high grade, but close... grade 2/3... Both me and my mom were also upper/outer quadrant. I don't think she took hormonal drugs after her lumpectomy....

    I don't think this is highly uncommon... the conditions ideal for DCIS were still present in your body (like a fertile soil) and it just moved to the opposite side. Technically because your former good breast hasn't had radiation yet/before you could do lumpectomy again but given that it returned so soon.... personally I would opt for bilateral mastectomy.

    It really sucks to have to deal with it again (AT ALL) - I had a scare 1 year after my surgery and was like WTF? If you do get another diagnosis you'll probably go down a similar course as you did the first time.....

    Luckily 4mm is quite small! And no mass.... not to make guesses but I imagine will be more DCIS. Hang in there.

    · Share on FacebookShare on Twitter
  • HopeBry
    HopeBry Member Posts: 88
    edited March 2019

    Sorry to hear. My tumor is in left breast toward chest area. My breast surgeon told me once reoccurrence doesnt move from left to right. I was not convinced and I also changed my surgeon. Ive read stories of women opting for lumpectomy and they later having to do chemo all over again for the right breast. I am a TN and Grade 3 stage 2A. Im only 41, I in no way shape or form want to possibly have to go through chemo ever again. Im still on Taxol treatments and I am choosing to have a Nipple Sparring BMX and not look back. Will have reconstruction as well. I cant get immediate reconstruction unfortunately because the PS said I have more skin than breast issue, they need to stretch it to look right.

    Hopefully you will be ok. To repeat the process takes such a toll on ones spirit, mind and body. Good Luck and stay positive always.

    · Share on FacebookShare on Twitter
  • Beesie
    Beesie Member Posts: 12,240
    edited March 2019

    HopeBry, your doctor was actually correct. It would be extremely rare and unusual for a recurrence to go from one breast to the other.

    But that doesn't mean than any of us can't develop breast cancer - a new, unrelated diagnosis - in the other breast. Every woman (and men too) can develop breast cancer, and having breast cancer one time in fact increases the chance that we might develop breast cancer a second time - not a recurrence, but a separate new primary breast cancer which can occur in the same breast or in the opposite breast.

    A BMX does significantly reduce this risk, but be aware that either a recurrence or a new primary breast cancer can develop even after a BMX. The risk is usually only about 1% - 2%, but it can happen and therefore it's important to remain vigilant even after having a BMX.

    Vantila, I am sorry that you are going through this a second time. Good luck with the biopsy. Hoping that this turns out to be nothing more than a very scary false alarm.

    · Share on FacebookShare on Twitter
  • Ingerp
    Ingerp Member Posts: 2,624
    edited March 2019

    My history is in my signature. The second time was not a recurrence but a new primary—the tumor characteristics were quite different. Best of luck going forward. Not fun but you can do this!

    · Share on FacebookShare on Twitter
  • HopeBry
    HopeBry Member Posts: 88
    edited March 2019

    Thanks Beesie, Im aware that a new primary cancer can form in the right breast or other regions. I am having the BMX just to lesson my chances of more issues and to have equal symmetry in both breast. Theres no guarantees with anyyhing in life but we got to try something. I barely have boobs so I dont mind losing what I have for my health and to have reconstruction. Also, my surgeon resigned so thats really the main reason I got a new one. Sucks to build trust in a surgeon only to have to find another that qualifies.

    Ingerp, I cant imagine going through chemo again. I fear that. I hate it with my every being. Glad you pushed through it. Keeping the breast is a personal choice. We have to try things to see what works for ourselves. I know women who developed new cancers and I new some that had lumpectomies once and never had an issue again so every situation is different. Im hoping to be one of those women. I pray.

    · Share on FacebookShare on Twitter
  • Vantila1
    Vantila1 Member Posts: 6
    edited March 2019

    I appreciate all of you taking time from your own concerns to offer support and encouragement. I see you all...and I have some understanding of your battles. This just plain sucks. I hate the fear that is constantly gnawing at me and I just don't want to do this again.

    I'm waiting on the biopsy for the 21st of this month, but part of me just wants these boobs off, even though I know that does not completely eliminate the chances of recurrence or a new cancer. I am a size 38DDD, so plenty of boob after my initial lumpectomy for the highly aggressive DCIS I had 2 years ago, but I look so ugly...can't even face the bathroom mirror to get dressed because I hate what I look like and the scars are constant reminders. I considered reconstruction but really don't want to go in for yet another surgery (unrelated surgeries every year for 4 years now). I know that a bilateral mastectomy has its ups and downs and they're not painfree or always perfect, but my increasing need to live without the continual nagging fear is driving a lot of my decisions lately.

    Thanks, again, for your comments and support. I've felt quite lost and alone lately and having others who've done the second or third rounds already to ask questions and get help is exactly what I needed. I wish you all long, beautiful lives.

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited March 2019

    Vantila - I'm so sorry you find yourself back here. I am a big proponent of being able to look at yourself in the mirror after bc. I wanted to reach out and let you know that reconstruction both with implants or using your own tissue from tummy or hips can be done in the same surgery as mastectomy. You go in with breasts and come out with them. Much easier on the psyche. With that being said, the reconstruction part you have a lot of say in. Investigate any plastic surgeons the breast surgeon recommends plus look at others. You want to see each one's before and after photos (you should be happy with the results you see in those photos; not just happy considering you had bc and it could be worse...if not, keep looking). You may need to travel to get the results you want and this is NOT uncommon at all. The PS can also do scar revision on the previous lumpectomy scar if you opt for skin sparing mastectomy, Here's a link to one of the top breast restoration groups in the country that will do implants but is also highly specialized in reconstruction using your own tissue. Their before & after photos are online for you to view to see what good looks like and to give you hope on what can be your reality.

    www.breastcenter.com

    · Share on FacebookShare on Twitter
  • blah333
    blah333 Member Posts: 270
    edited March 2019

    I found that a bilateral mastectomy was not SO bad. Especially pain wise. Recovery was fairly easy. I did not get recon. I was pissed to lose my "perfect' breasts but I can easily look at my breastless self in the mirror and still feel like I look pretty good. I was only a B so it's not a HUGE jump for me. I also got pretty decent flat results. I have read many women that had D and up (size F, letters I did not even know were possible) that say "I've had large breasts all my life, it was a huge relief to be rid of them" and, although it's a drag to have breast cancer and need surgery, large breasted women often sound like they feel liberated after mastectomy. It depends on the person. Do some research and look at mastectomy pictures, talk to other women (flat and fabulous is a good resource on facebook). You can get both sides (recon or not) of the story before you make a decision. Personally, I did not have any issues with my "psyche" following surgery. I had 2 months between diagnosis and mastectomy and I prepared my mind by looking at as many pictures as possible of flat chests. The idea of going in with breasts and coming out of surgery having some other junk on my chest rather than what I'm used to seeing there felt so offensive to me. If I couldn't have my own breasts, I'd rather have nothing.

    EDIT: I will also say at the time it was so insulting to have to go through this, "fake" breasts repulsed me (in comparison to what nature provided me with) but by now I have seen so many pictures of all kinds of chests flat/recon, good jobs/bad jobs I am desensitized towards scars and askew mounds.. If people are happy with recon - no problem. Personally it was just not up my alley even aside from the cosmetic aspects as I did not want to be carrying implants around, I am very active and also sleep on my stomach.


    Lumpectomy/mastectomy wise.... if this will be your second time with this and you are only 43, I would definitely opt for the mastectomy.... being younger certainly makes you more at risk for recurrence etc...

    · Share on FacebookShare on Twitter

Categories