DCIS

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Cheryl1962
Cheryl1962 Member Posts: 1
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I had a routine Mamo last Nov 2012, then a couple of weeks later my doc called and then I needed another one to check out my left side. Long story short, DCIS and then the decisions. I chose mastectomy with diep reconstruction. Long surgery, but I was really not really nervous, I felt positive and more worried about my husband, knowing it would be a very long day for him. Got through surgery quite well. I found that the sentinal node dye injections which I recvd the day before, was worse than anything. Thank goodness it is a very brief pain. I am having sooo much trouble with sleep and my upper back is always aching. Drains out and feel so freedom there, but I guess it will all get better each day. Well wishes to all out there.

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  • Chantel
    Chantel Member Posts: 66
    edited May 2013

    Did you just have your Mx? Because indie two weeks ago. Waiting to get my drains out.

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  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    Hi Cheryl,

    So sorry you have to join us here, but it is a great place to chat and find support.

    I was Dx with DCIS too, and had a Mx, but didn't reconstruct so my recovery was really fast.

    Give yourself time, you have been through a massive surgery, so you'll feel tender fo a while. I found it all got much better after the drain was removed, but you still have to be gentle with yourself. I found that having a power nap whenever I felt I needed it, was good for me. I also took slow walks outside to help me get sleepy. It takes quite some time for the anaethesia to really leave your body, and I believe that it is this that makes us feel a bit weird and unable to sleep. I made sure to drink at least a liter of springwater every day to help the kidneys flush the meds out.

    I wish you all the very best for a speedy, uneventful recovery! Take care of you!

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  • KarolineH
    KarolineH Member Posts: 40
    edited May 2013

    Hi all,



    I am 38 years old and newly diagnosed with DCIS. I had bleeding from my left nipple only (mamo and ultrasound showed nothing) but my BS suggested a ductectomy to be safe which I had on 5/9/13-DCIS stage 0 .8cm. My BS recommended a lumpectomy to clear the margins, Tamoxafin and radiation. (Six years ago I had bloody discharge from my left breast but the mamo was fine and I was told not to worry. Two months ago the bleeding came back). I had my second opinion at Memorial Sloane Kettering today and scheduled a preventative double masectomy for 5/28/13 at Sloane.



    My mother has had bc twice but did not get the braca test. I had the braca test last week

    and am waiting for the results.



    Well wishes to all.

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  • deb1973
    deb1973 Member Posts: 96
    edited May 2013

    Hi Karoline,

    I am so sorry you are going through this. Our stories are eerily similar as I am 39 y old with a history of benign growths and previous bloody nipple discharge. I am also in the process of recovering from a bilateral MX.

    You will find some great advice and support on these boards. I have come to feel grateful for the bloody discharge as without it, they prob would not have caught the cancer at a preinvasive stage.

    Deciding which treatment is right for you is such a deeply personal choice. I hope you have family or friends close by to give you support. My family has made such a big difference. I've sometimes felt scared, but not alone.

    Sending you lots of good thoughts and wishes.

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  • KarolineH
    KarolineH Member Posts: 40
    edited May 2013

    Hi Deb,



    Thank you so much for your response although I am so sorry it's on this site. I hope you are feeling well and continue to.



    I too am grateful for the bloody discharge; it was a blessing in disguise. I know I am making the right decision with the MX but I am scared as well.



    I have a wonderfully supportive family and fiancé. Our engagement party is June 22 and I am hoping (and telling) myself that I will be feeling well enough to not postpone. My BS said as long as the surgery goes well I should be okay for the party which is about 3 1/2 weeks out.



    Sending you thoughts and good wishes too.

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  • 1openheart
    1openheart Member Posts: 765
    edited May 2013

    KarolineH....my son's engagement party was about 3 1/2 weeks out from my UMX.  I was pretty tired when it was all over, but it was a happy tired!  Best of luck to you and congratulations on your engagement.  Hang on to the happy things, they help to get you through the hard times.

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  • deb1973
    deb1973 Member Posts: 96
    edited May 2013

    Hi Karoline,

    Definitely, as 1openheart says, hold onto those happy times. I'm about three weeks out from my MX & I think it is totally realistic for you to be able to enjoy your engagement party.

    You deserve that - I am so glad you have a good, supportive fiance. Cancer sucks all around, but it has given me the opportunity to see my husband do things, like stripping the drains, that someone who hasn't gone through this might not view as romantic.

    Plan on having an absolutely wonderful engagement party & hold onto the love. If you are able, it is so good to have family with you at the hospital. Just keep reminding yourself that every day is going to better.

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  • KarolineH
    KarolineH Member Posts: 40
    edited May 2013

    Thank you both so much. Your responses just brought happy tears!!!!!

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited May 2013

    I had greenish discharge (with blood in it) in 2006 and then a failed ductogram. The Dr then did an MRI which showed nothing. The ductogram wasn't attempted again. Now I have dark brown to black discharge and the mammogram and ultrasound shows nothing but this new doctor gave me antibiotics and is doing a galactogram/ductogram in about 10 days days because of my history...and she asked if there was blood in it in 2006....i told her no, but now remember there was. I will let her know at the appt. How often does DCIS not show on an ultrasound, I wonder?

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  • KarolineH
    KarolineH Member Posts: 40
    edited June 2013

    I am not sure how often it is missed in an ultrasound. My first MRI did not show anything either. I hope your appointment goes well and I will keep you in my prayers.



    I had the bilateral masectomy last Tuesday and resting at home.

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  • hoping42
    hoping42 Member Posts: 117
    edited June 2013

    Hello and hugs to all of you!

    I was diagnosed in January with dcis (I am 42)-lumpectomy Feb. 5-pagets found-bmx/tissue expanders-Feb. 21--those dang drains were in for so long!  I just had my exchange surgery on May 30th.  I am doing well, just tired and some (oh, and so colorful) bruising. Back to the recliner for sleep, but no drains!

    -Mine was found on routine mammogram-calcifications.  I just knew in my gut something was going on with the nipple.  Flaky, VERY itchy, burning/tingling and very small amount of yellowish discharge.  Almost looked cracked. Nothing showed on the mammogram, ultrasound or mri regarding the pagets.  Just gut instinct.

    It does get better.  Happy, happy engagement and enjoy!!! Hang in there!  I am thinking of all of you!!!!

    (((hugs)))

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  • KarolineH
    KarolineH Member Posts: 40
    edited June 2013

    Thank you!!!! It's amazing at how correct your gut instinct can be!



    I have my first post operative Dr. appt tomorrow and I should be getting the drains removed. I am under 30ml in 24 hours!! I am still pretty sore and tired but I wound up having a hematoma on my left side and had a second surgery (about 8 hours after masectomy) so I wasn't sure if that would add to the pain. I have two great doctors at Sloane; Dr. Sclafani and Dr. Matros if anyone needs some feedback on Sloane Kettering.



    I am glad your exchange went well and no more drains:) I will keep you in my thoughts!!!



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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited June 2013

    Been praying and thinking about you, Karoline! My galactogram is tomorrow. The discharge is mainly pin drop size and always from this single duct.

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  • KarolineH
    KarolineH Member Posts: 40
    edited June 2013

    You are in my thoughts and prayers as well. When will you get the results from the galactogram? Mine was also pin drop size and from a single duct.



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  • deb1973
    deb1973 Member Posts: 96
    edited June 2013

    Hi Karoline,

    Hope you are healing well post-surgery. Are the drains out? That was a real turning point for me. I hope you are looking forward to a happy (& healthy) engagement party.

    Momcat, I was also diagnosed from nipple discharge - nothing showed on the mammogram or ultrasound. Standard of care, if the antibiotics don't work, would be an excisional biopsy. The galactagram is sometimes helpful in locating if/where growths are in the ducts, but some doctors also use MRI. I hope everything goes well & you get good results.

    Best,

    Deb

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited June 2013

    Deb, they found nothing, but said she wants to know why I still have the discharge so I am scheduled ed d for an MRI next week.

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  • deb1973
    deb1973 Member Posts: 96
    edited June 2013

    Hi Momcat,

    I'm sorry you have to have another procedure, but it is so good they're being thorough.

    The MRI will help them to know where to look. There are (as you know) lots of benign things associated with nipple discharged so I will be thinking good thoughts for you.

    Take care,

    Deb

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  • KarolineH
    KarolineH Member Posts: 40
    edited June 2013

    Hi all,



    I started all my arm exercises this week and am very sore. I stopped taking the pain meds but I am hurting more than I thought I would. I also noticed that I am not standing up straight without a concentrated effort. Is this normal?



    Thanks,

    Karoline

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  • deb1973
    deb1973 Member Posts: 96
    edited June 2013

    Hi Karoline,

    Sorry you are having unexpected pain. Have you thought of going to Tylenol as an intermediate step? If the pain is significant, you should probably check with your surgeon to rule out an infection, etc.

    I also found the transition off meds (at might in particular) to be a little bumpy; it felt like my body had become habituated. It wasn't horrible, but it took a couple days to get through.

    As for the hunched over stance, I don't know if you had reconstruction or what kind. For DIEP, it took me at least three weeks before I was able to fully straighten up.

    Remember that you are still freshly out of surgery & to be gentle with yourself. Rest as much as you can & try to get in some walking when you are up for it.

    Hope you feel more along the road to recovery soon!

    Take care,

    Deb

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited June 2013

    I posted somewhere else, too...sorry...brain fog issues! MRI was a bust (no pun intended)...anxiety too high so I rescheduled for next week with valium. They got halfway through...no contrast dye. Partial report said DCIS or Papilloma count be ruled out ..well, duh...anyway. :p

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  • KarolineH
    KarolineH Member Posts: 40
    edited July 2013

    Hi all,



    I am going for my third fill tomorrow. I am still sore and have tightness which I hope will subside with the more fills I get. I have been told it can get worse but I am hoping for the opposite. My chest is still so sensitive to touch (even a towel wrapped around me is sensitive). Has anyone else had this?



    Momcat- any updates?



    Hugs to all.



    Karoline

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited July 2013

    Hi, Karoline!



    I am so sorry about your pain!

    I posted this on another thread..saw the surgeon yesterday and we went over the MRI results...short version: mri doc thinks benign. bilaterally T1 signal high for proteinaceous debris in "some" ducts but more so on the side that has the bloody discharge and at 6 O'clock position.



    Long story short, I decided with the surgeon (she said it was MY decision to excise the duct or wait 6 months for another MRI) to go for the ductal excision because she agreed something "meaner even tiny" can hide in debris. I am working summer school so will be having the surgery in a month.



    I hope everyone else on this knows they are in my thoughts and prayers, too! :)

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