Rita's Journey with Ductal carcinoma in situ (DCIS)

Patient: Breast Cancer > Ductal carcinoma in situ (DCIS)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 6 years ago, Female, Age: 49, Stage 0

  1. 1
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Diagnosed

    Oh No

    What was DCIS? Why me? Cancer or not?? I'm too young!! How do I tell people?? What does it mean? Do I really need surgery if it isn't a problem? I've never had surgery before. What will recovery be like? How much pain? How long out of work? How will they know if they got it all? What if it comes back?..........

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  2. 2
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Decision Point

    OK. I trust my surgeon, ob/gyn and primary care. Even if it's not cancer - whatever it is - it clearly has to come out. Radiation?? They keep talking about an oncologist and radiation oncologist, radiation and Tamoxifin. I was getting concerned that maybe this really was "cancer" and something bigger than first glance. Onward to lumpectomy!

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  3. 3
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Lumpectomy

    Procedure or Surgery

    Recovery was both better and worse than I thought. Less pain, but my first look at my new 4" scar scared me more than anything. The worst part was waiting for results.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Decision Point

    No clear margins on first lumpectomy. Not even close. Area taken was twice the size of what showed on mammo, but not enough. Recommendation was for re-excision and sentinel node biopsy. But first, he wanted me to see an oncologist. Oh boy. Oncologist said that the only no-brainer to him was the SND. He actually recommeded mastectomy at that point because of size of area and lack of ability to see it. I was still convinced that mastectomy was way too radical for something that most don't even call cancer. Decision - SND and re-excision. My only fear was lymphadema.

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  5. 5
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Lumpectomy

    Procedure or Surgery

    This time I was much more prepared and knew what to expect. The worst part was the injection of the dye for the SND - crazy painful! While there was more pain on this recovery, the worst part again was seeing the significantly larger scar and realizing that half of one breast was gone. How was I possibly going to deal with that? I figured that I'd just have to deal with some level of reconstruction when the rest of treatment was over.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Decision Point

    After 2 procedures and thinking I was moving on to radiation, my team (BS, Onc, RO) told me that they didn't think radiation and meds were a good option. The original area of calcifications was somewhere around 3cm. 1st surgery took about 5 cm and didn't get clear margins. 2nd took 9cm and got ok margins. The kicker is that the mammogram had only shown 3cm and the pre-op MRI showed no issues at all. The concern was simple - we can treat you with radiation, but we don't know if we'll be able to see it if it comes back. In my book, the decision was easy at that point. I just don't think I'm strong enough to live the rest of my life wondering if this is the scan that missed it. The decision was the right one, but the effects of it are very difficult on all levels.

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  7. 7
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Double Mastectomy

    Procedure or Surgery

    I was lucky enough to find a great plastic surgeon and had an equally wonderful general surgeon (who now gives me hugs every time I see him). They both stressed how well everything went - textbook. The pain was horrific and I had to stay in the hospital for 3 days. I expected not to be able to shower for a few days, no driving for 2 weeks and having issues in general, but it was all worse than that. Couldn't drive for 3 1/2 weeks and couldn't go back to work for 5 weeks. It's now 2 weeks after returning to work and I'm nowhere close to being able to handle full time. Also had tissue expanders done for re-construction. They are pretty close to what I had anticipated. The pain is now minimal, it's just very exhausting feeling somewhere between pain and discomfort 24 hours a day. 3rd fill is today and goal is to have switch out procedure done by the holidays!

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  8. 8
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Lymphedema

    Side Effects

    Nothing serious yet, but definite fluid build up. I was lucky enough to find an LE specialist who does manual drain manipulation and it's wonderful! My sleeve is on order, picking it up on Monday.

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  9. 9
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Depression/Anxiety

    Side Effects

    I had been in treatment for depression for a couple of years prior to this and was really starting to figure out the best meds and like I was getting back to my old self. Almost complete regression now. Not sleeping (even with meds and relaxation exercises), fighting to keep my mood up all the time. I'm hopeful that this will pass and continue to see my therapist and psychiatrist. Just trying to get through one hour at a time.

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  10. 10
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Pain

    Side Effects

    Tissue expanders were awful. Pain in the breasts, pinched nerves, numbness, swelling, tingling, tendonitis, bursitis. I chose to deal with it by pushing through it all and staying focused on my goal of being done with it by end of 2011. Eternally thankful to my wonderful physical therapist for helping me manage it all and keeping the end in sight.

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  11. 11
    • Rita
    • Experience with Ductal carcinoma in situ ...
    over 5 years ago
    Rita's Avatar

    Surgery

    Procedure or Surgery

    It's 2012 and I made it! Expanders gone and implants in! Everything felt better from the moment I woke up in the recovery room. So much pressure was gone and my breasts didn't feel like boulders anymore! Recovery took several days and it was about 2 weeks before I could go back to work, but I think part of recovery was the release of months of exhaustion from fighting for so many months. Still healing and unable to sleep except on my back, but progress is being made every day and I finally feel like I'm getting my groove back.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    2 Comments