Another newly diagnosed DCIS at 41

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Emaline
Emaline Member Posts: 492
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

It was a crazy thing, on 3/21 thought I felt something in my right breast, my doctor examined both breast but said no, everything was fine. But I hadn't had a mammogram, so he decided to send me for that. Turns out my right breast was fine but I had lots of calcification in my left breast, the doctor wanted them taken out and biopsyed.  I had 2 areas removed via wire guided excision.  One area turned out with A-typical cells the other area is DCIS multi-focal, no clear margins and the surgeon recommended mastectomy but she wanted me to get another opinion. So she sent me to the doctor she did her residency under.  He is the medical director of the breast center at one of our largest hospitals (he is also the doctor for my friend who has BC and she loves him). I saw him last night, and even though they took out 7 cm with no clear margins, he is pretty sure he can do a lumpectomy and get clear margins.

 He decided in the end to have me get a breast MRI (scheduled for Thursday) before he makes a recommendation. He did say, he can't guarantee that he will get clear margins.  If he does not, I will have to get a mastectomy. Frankly, I'm fine with either options.

I am just so fed up with everything at this point.  The one area that they excisioned is healing great, the other area (on the opposite side of the breast) is still horribly swollen and I'm still purple on almost that entire side of the breast. My new doctor said he won't do anything until the swelling and bruising goes down...so still more waiting.

 It has been such a crazy 3 weeks.  Usually I have a good day, followed by a very bad day, back and forth.  I called my doctor and he gave me Xanax, which I take .25mg on those very bad days. But then I berate myself for being a wimp.  

I am loving reading the stories here because it gives me hope that I can get off this crazy train and start feel normal again.

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  • texaslonghorn31
    texaslonghorn31 Member Posts: 65
    edited April 2011

    Welcome to this group... I was diagnosed DCIS last July with lumpectomy and 33 sessions of RADS. Finished treatment in Oct so am about 6 months out. The people in this community are so awesome and make me feel like I am not going crazy or if I am I am not doing it alone. I was like you in that I found my lump but then had to push and push to get a mammogram.. I was only 38 for the first mammogram, they told me "I was too young" to get cancer since there was no history in my family of ANY cancer. Another mammogram in June and thankfully the radiologist had a feeling my calcifications looks sketchy and sent me for biospy.... DCIS.

    My boob (just my right) hasn't looked normal since surgery and who knows if it ever will. I had to wait a month between the surgery and when I could start RADS for the brusing and swelling to go down and for the incision to heal. That month sucked... I just wanted to get on with it already! So I know how you feel!

    I know for me life has calmed down and somewhat gotten back to normal thought I have a new normal with life after cancer than I did before I was diagnosed. Having a good support group and keeping a sense of humor was about the only thing that kept me sane! Good luck to you!

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2011

    Welcome, unfortunately, to this club. I was 43 when diagnosed ~ 18 months ago, routine mammogram picked up first-ever-seen calcs (who even knew what a calcification was before this?), which lead to DCIS diagnosis after a stereo. biopsy.

    Good luck with the MRI, my dr. had me do one, too, before he'd fully commit to my having a lumpectomy rather than mastectomy. The waiting and testing and appointments are a b^&%*, and now that I'm post surgeries and rads, I can truly say that the phase you are in right now was the worst part of it -- wish I'd taken something to take the edge off, you aren't crazy (I was for not asking for something).

    But it is so important to get all the facts now in order to make the best personal decision for you. I am thankful to have been given the option of lump. + rads. or mastectomy, and really look the same as before all of this process began, just a small vertical scar (but I still wear the same bra, rad 'tan' is virtually gone, and nothing feels any different).

    The women on this board and the Radiation board March 2010 thread (we all started at the same time with our zaps) were/are the best! Kept me informed and less scared, and now I'm happy to do the same. Best of luck, you'll get through this and someday be like me!!!

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  • Emaline
    Emaline Member Posts: 492
    edited April 2011

    Thank you all for the welcome :)  I am reading through the post and just trying to find my way here.

    I have a wonderful support group, for which I am forever thankful for, but felt the need to talk with people who are going through the same things as myself.  

    I've been told repeatedly, this is the worse part.  I just need to get my brain on track with this.

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  • MamaMia41
    MamaMia41 Member Posts: 101
    edited April 2011

    Hello,

    I was diagnosed with DCIS on 2/08/11 at age 41. Everything seems to be taking a long time for me too.  After my diagnosis my surgeon ordered genetic testing (negative, thank goodness) and an MRI before scheduling my surgery so she knew exactly what we were dealing with.  I had a lumpectomy on 3/22/11 with a positive margin, so I had a re-excision on 3/30/11.  That produced a margin clear enought to be able to start radiation, I go for my consultation next week.  Even though waiting for the test results is terrible, as everyone has stated, you definitely want to know everything you can before having more surgery so you can make a more informed decision.  By the way, did you have the BRAC analysis?  That would be important information for you too.

    It sounds like we might be on the same path, please keep in touch!

    P.S. My surgeon gave me a prescription for Xanex at our first appointment.

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited April 2011

    Emaline, sorry you have had to join our club but happy you found us!

    Just wanted to chime in to say Xanax is a very dear friend of mine and you are absolutely, positively NOT a wimp for taking it! ;-)  We do what we have to do. These are by no means normal times! Please be good to yourself and keep us posted on how things go on Thursday!

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  • NJMarilyn
    NJMarilyn Member Posts: 37
    edited April 2011

    I had a mastectomy in February for DCIS and I am happy with my decision.   The tumor was 4 mm, but the pathologist found extensive suspicious areas.  My decision to have a masatectomy was based also on having lupus.  Radiation is contraindicated in someone with lupus.  I have gotten my prosthesis and I am fine with it.  Thinking of you.....Marilyn

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  • Emaline
    Emaline Member Posts: 492
    edited April 2011

    Oh thank you all for the kind posts :)

     Mamamia, no one has suggested genetic testing yet.  When I had my MRI done today, they asked the same question. Is this something I should ask for?

    I believe my issue with the lumpectomy is, if we don't get clear margins, then I am going to have to have a mastectomy, which I'm okay with. Do I want one? No but better what alternatives do I have?  I just hate the thought of more surgeries but what are you going to do?  

     Rennasus, I don't know what my issue is with Xanax.  I have just read so many stories about people becoming addicted to it and I don't want to be one of them.  However making myself sick is not a good thing either. I'm down another pound today because even when I do eat, my bowels are just not putting up with it and *sorry TMI* out it comes. When I take the Xanax, I don't have any issues with my bowels or food, so I know it is anxiety related.  Making myself sick, is not going to help me.

    NJ Marilyn, when you say extensive suspicious areas, do you mean A-typical cells?  My one doctor was concerned about my a-typical cells, my other doctor didn't care about them.  Gah!!  all of this can make you so crazy.

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  • Emaline
    Emaline Member Posts: 492
    edited April 2011

    Just an update:

     Had the MRI, it went great. I took a Xanax ahead of time but honestly think that was overkill on my part.  I just wanted to be sure I could handle it. I almost fell asleep on the table, went into a light doze.  

    I was so very angry yesterday. I went to see the plastic surgeon yesterday. I told them on the phone that I was switching doctors, and who my new doctor was. They said no problem. Took 1/2 day off from work, so did my husband, we get there, wait to get seen, get in there and 1/2 way through consultation the PS told us that he doesn't have surgery privledges for the hospital I will be having either my MX done or my lumpectomy.  Oh I was so mad.  I did get some good information but it was a complete waste of my time....I'm also behind now and need to find a new PS.  I know in my area, they are a dime a dozen but it means another day off from work for the consult and I'm really trying to save my time off for the surgery.

    Plus when I get home I missed the call from my doctor regarding my MRI results!  He said they were okay but wanted to discuss.  I have ZERO idea how to take this.  I tried calling back, but their office is closed.  I'm trying to take what he said at face value, that they are okay.  I know he has gone back and forth on whether I should do the lumpectomy or the MX.  I know normally they recommend MX for anything over 5cm and mine was 7cm.  Doctor feels due to size of my breast I probably have clear margins, which is why he wanted MRI done.  So now I feel he probably has the answer and, oh phooey!! I don't know what it is! LOL.

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  • rc778
    rc778 Member Posts: 56
    edited April 2011

    Emaline,

    Try to relax and stay positive.  CTMOM1234 is right.  You are at the worst part right now.  The waiting is the absolute worst.  I was diagnosed with DCIS and had a BMX about 6 weeks later.  At the time, it felt like forever but now, I realize that it was a pretty quick turnaround.  With DCIS, you have time to get different opinions and time to make the best decision for you.  Take the Xanax to take the edge off.  Once you have your surgery I bet you will not need it anymore.  Good luck to you.

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  • Emaline
    Emaline Member Posts: 492
    edited April 2011

    Well I hit my 3 week mark and I actually feel pretty good. I don't know if that is the magic time for the brain to stop freaking out, if all my friends continued kathunking of my head to stop the crazy train has finally worked (for their sakes I hope so), or I have come peacefully to the resolution that I can't change what may come from this whole thing.  I can't change results that may come from future tests. I can't change it.  It is what it is. I may as well worry about being a satellite dropping out of the sky and hitting me on the head.  People have told me this all along...but it seems as of Thursday, my brain was willing to accept it.

     Of course my incision started bleeding (just a teeny tiny bit) today, and that threw me for a loop but it didn't send me with a first class ticket to loony town on the crazy train.  So I'm getting better.  

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  • Sarah1966
    Sarah1966 Member Posts: 2
    edited April 2011

    Hi, I'm new here and can't tell you how it feels finding females I can identify with--finally!  I'm a 45-yr-old that is mistaken for 30, which I suppose is a compliment!  I was recently diagnosed w/DCIS/Stage 0/Pre-Breast Cancer.  I had a lumpectomy on Feb. 15, and have been told I need to have a re-excision due to getting clear margins.  From what I've read, a re-excision sounds VERY common.  Has anybody experienced a rash, slight burning, and a little discharge at the incision point--and this is over 6 weeks after the first lumpectomy! I showed my surgeon, who prescribed a saline solution and a antihistamine, which I've been using/taking for over a week, but the rash is still there; and it hurts/irritated when any clothing/bra items are touching it.  My re-excision is sched. for May 3, and I'm afraid I'm not healed enough for another surgery.  Also, I'm told I will need to do at least 5 or so weeks of RAD afterwards, followed by Tamox.

     Any advice on the rash and irritation on my left breast?  I wonder if it's not infected. I should probably see my surgeon again prior to the re-excision on May 3. 

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  • Emaline
    Emaline Member Posts: 492
    edited April 2011

    I've heard that re-excisions are common as well.  My doctor may recommend one to try and get clear margins, but he said if he did not get clear margins, I would have to get a mastectomy after that.

    Are you still using bandaids? Or other types of dressing to cover up the incision?  I had a horrible reaction to the dressing that they used in the hospital (some huge clear tape that covered the gauze and incision). I broke out in blisters and the skin peeled off in areas.  I'm just wondering if what you have may be an allergic reaction?  I would definitely call your doctor again!  Your doctor will let you know if you are healed enough. I know my doctor said he would not do a lumpectomy on me at this point since I'm still so bruised and swollen. He wants me to heal more. 

    Let us know what happens :)

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  • MamaMia41
    MamaMia41 Member Posts: 101
    edited April 2011

    Hi Emaline,

    Genetic testing (BRAC Analysis) is usually suggested for women who are at a high risk for having hereditary breast or ovarian cancer.  My mother was diagnosed with breast cancer at age 42 and I have had several other family members on her side who also had cancer.  This, coupled with the fact that I am young, put me in a high risk category and warranted the testing.  You may not need it, but if you are interested in learning more you can check out Meridian Laboratory's website for more information on BRAC Analysis. 

    Glad the MRI went well, you are one step closer now!  I too had a bad reaction to the clear tape used on the dressing after surgery, just around the edges of the tape.  

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