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16 comments on “Contact Us

  1. My friend and neighbor, how brave of you to lay open your experiences to benifit others! God bless you in your journey of telling your journey…and in your desire to put useful and helpful information out there for everyone. I am proud of you!

  2. Incredible dedication to community education! It is so important to spread the word, increase awareness and lift the spirits of many! Thank you for being a “peace of mind” advocate for so many going through similar circumstances. Thank you for letting me be apart of your recovery process!

  3. Thank you for sharing your story which was similar to mine, even the same breast. My DCIS was found by complete luck when I had an ultrasound to check what was confirmed as a large cyst I had found shortly after having a routine mammogram which was all clear. The ultrasound also found a very small mass which was diagnosed as DCIS on 18 July 2011 after having a biopsy and I was told on 10 August after my MRI that it was a larger area than first thought and I would need a mastectomy. This I had on 6 September along with an immediate reconstruction. I was lucky to be assigned by our free public health system probably New Zealand’s best breast surgeon though I did end up having the surgery privately with him as the private hospital was – well – more private! What I can say is that I was well informed every step of the way: 1. I knew I was being injected with nuclear material for the sentinel node detection as they had provided me with written material about it by email and post. 2. They texted/messaged my husband during the surgery to say the initial tests on the sentinel nodes showed no invasive cells. 3. I had in-hospital physiotherapy (your PT) starting about 3 days after my surgery and was given a booklet with exercises to do every 4 hours to help with lymphatic drainage & ROM. These exercises built up depending on what stage I was at. I had 4 drains and some exercises could only be started once the drains were out (the last one came out 11 days after surgery). I am now attending physiotherapy with a therapist who specialises in women who have had breast surgery. I went back to work part-time 3 weeks after surgey and full-time the following week (last week!) and though I’m still sore and still feel like I’ve been hit by a bus, it keeps me moving and I’m not one for lying around! I’m really looking forward to celebrating my 50th birthday next year now, an event that I was dreading but will now be celebrating with all the wonderful friends & family that have supported me at this time.
    When I was first diagnosed I was under the care of the Breast Care Centre at our local hospital. They have Clinical Nurse Specialists who are available anytime for any questions. They also gave me an excellent resource that is given to all women with breast cancer in NZ which is called Step by Step and includes information, a diary for all appointments and a blank journal.
    It’s Breast Cancer Awareness month here too and my family is showing support by entering a Pink Walk charity event with all proceeds going to Waikato Breast Cancer Trust which just happens to have my surgeon as it’s Chairman. Lucky it’s only 3.5km.
    I have learned from this experience that I don’t think enough emphasis can be put on this: KNOW YOUR BREASTS! Mine weren’t right and I got them checked and it may well have saved my life!!
    Aged 49
    New Zealand

  4. I was diagnosed with DCIS in February 2010 and had a lumpectomy followed by radiation the following November. I had to wait to have the surgery since I had a complicated abdominal surgery followed by a temporary colostomy in November 2009. My colostomy reversal was in March 2010, so I had to be healed and strong enough for what was to come.

    The radiation process had a profound effect on me. Going to the center for five days a week for seven weeks really impacted me. One day, this poem just came to me out of the blue.

    Radiation 2/24
    The invisible rays
    Dance through my skin
    Burning secretly in my core.

    The electrons dance.
    Who’s leading here?
    I don’t think I am any more.

    The electrons dance,
    or maybe march.
    An invading army
    Bent on destruction.

    • Hi Betty,
      I am sorry for all the complications on your journey. Every experience is different because we are all individuals, but we are bound together as breast cancer survivors. Keep on trekking!

  5. Hi- I very much appreciate a place with so much information about DCIS! I am a bit concerned though there is very little (if any!) conversation about grades along with DCIS dx… For example, my DCIS was Grade 2/3 and because of the 3 it makes my DCIS more inclined to recur… IS there a reason that you have not addressed the grades here? Thanks again for all the other information it would have been very valuable for me to have found a site like this 5 years ago!!! Take Care!

    • Hi Deirdre,
      Thanks for your comment. The reason I didn’t include, is because I haven’t added it yet! When I started this site, it was with my “Top 10 Tips Before Mastectomy” and grew from there. Some items are included because they were most important to me at the time. Other items were added because contributors like you asked questions or thought it should be included. So, you’ve given me an idea for another new section! As I said, this is a community site and I appreciate your taking the time to start the conversation about grade. I’ll get to work on it, so check back soon to see what I’ve added!

    • I know what you mean. I was Grade III…but I guess it doesn’t matter. If it’s DCIS, it’s DCIS?? In a way, it’s kinda sad that we have to ask each other…since we were never informed by the medical community.

      • Also, do you need to be concerned if you are Estrogen/Prog. Negative or find out if you are Triple Negative? Or, doesn’t that apply if you have DCIS?

      • Hi Kris,
        Yes, you should be aware of positive/negative and grades as they guide your doc in current and future care. Check with your doctor directly with questions.

  6. Wow! This is a FANTASTIC website. Thank you. I had extensive DCIS-Grade III-Estro./Proges. Negative. I had double mast.s with first stage reconstruction and was sent home the next day. (Age 40-41) I had my surg.s in Marshfield, WI.

    Now, 2 years later….I’m just kinda lost?!? Since it was DCIS…it’s kinda like they forget about you. I have a “brief” visit once a year with the surgeon and that’s it. So all these links on the website have been beneficial to me. Thank You!

    After my surg.s, the physicians in Marshfield suggested that I find a “primary provider” since I really didn’t have one. Prior to my diagnosis I had been extremely tired and was thinking about being seen for the fatigue, etc. I knew I had my annual p/p coming up and thought I’d run it by that physician first. Well, I didn’t get the opportunity…because I had my mammo. first that day and that wonderful discovery. 🙂 So, after my final surg., I went to this new provider and asked her if I could possibly have Mono. or Lyme Disease. She didn’t think so, but she did run them both and…sure enough, the Mono. test came back Positive. (Figure that one out!) A year later…I was still tired and had some other issues, dizziness, ear ache…and had to practically beg to have some lab work done. Sure enough…I had Iron Def. Anemia. I was given a Rx for Iron Suppl.s and told to make sure I take them every day or I’d need a transfusion and sent on my merry way. Of course my family and friends were concerned and wanted me to ask for more testing..and kept telling me not to let them put a band-aide on it and not find out what is causing it. So, I made a few calls to the office to ask some questions. I asked the nurse if the def. could be caused by blood loss. When the nurse called me back, she stated that it was caused by my diet and that she can’t find anything wrong with me and she’d refer me to an Internal Med. doctor. (Yippeee….so, I thought)
    When I met with him (young guy from Africa) I asked if I could have some tests run…Celiac, Anaplasmosis, Thyroid and Vit. D which he agreed upon…and he also stated he believed I was going thru menopause. Well, a few days later I got a call that my Vit. D level was extremely LOW and was put on 45,000 units per week. The IgA was extremely elevated but I didn’t have Celiac disease? When I had my follow-up a month later he made it known that there wasn’t anything wrong with me…it’s all in my head…that I think my cancer is coming back, he wasn’t going to order anymore tests, and that I needed to get an “Insight on Life.” I tried to explain to him that I felt this way PRIOR to my diagnosis…but he wouldn’t listen. So, I went to the lab and had my blood drawn (iron and vit. D) and went home. A few weeks later the nurse called informing me that my Protein Electrophoresis was elevated?!? I wasn’t aware he was running one? I thought he was just doing the follow-up Vit. D and Iron?) So, anyhow….

    One of the links on this website (Low Vitamin D Levels Linked to High Risk of Premenopausal Breast Cancer) was very interesting to me!

    I’m soooo happy that the majority of you have had good experiences with your physicians!!! I wish there was some type of protocol for follow-up DCIS patients. Or given info. on recent studies or follow-up with their breast cancer patients to see if the are low in D., etc.) The Internal Med., OB/GYN doctors aren’t up on it and don’t know what do check?

    Anyhow, if this helps anyone out. (I was Extremely Low in Iron and Vit. D)

    • Hi Kris,
      You have had such a rough time with your health and I’m so sorry about that. I do applaud your tenacity in advocating for yourself that you don’t feel right. Too many breast cancer survivors suffer side and other effects in silence. A lesson and reminder from you to speak up! Yes, you should pick a primary care doc and plan your follow up care, track any suspicious symptoms and continue to be followed.
      Warm Regards,

  7. Thank you for your site. I was told today, after surgery to remove a “fatty tumor”, that the pathology report showed I had DCIS. I am a male, 57 years old. I will meet with the surgeon in 5 day to discuss options. With losing my wife to ovation cancer, 8 years ago, I know to be aggressive. I am looking at surgery plus radiation. Men can get this too. Thank you again for all your information.

  8. Britta, thank you for putting together this wonderful website. I am inspired by your recent blog “relishing normal.” I haven’t felt normal since my DCIS diagnosis two months ago, and it is comforting to know that I too will feel normal again someday. I was 48 when diagnosed, with three children at home, a wonderful husband, a busy job and busy life. I originally planned to have a lumpectomy and radiation. However, the pathology following my lumpectomy showed extensive high grade DCIS throughout the excised tissue. I am now scheduled for a mastectomy at the end of January and plan to have immediate reconstruction. Frankly, I am scared about how I am going to recover from this larger surgery and very grateful to have found your practical and useful pre-mastectomy and post-mastectomy tips. I will be reading all the helpful information of your website in the coming weeks. Thank you for bringing me comfort.

    • Hi Jennifer, I am glad you found the site helpful. You have plenty of time to plan ahead and get help set up for you as well. Rely on those who can ease your daily burdens: food preparation, cleaning and errands so you can focus on resting and recovering. Though it seems like a gloomy cloud is looming in the distance, you will get through it and I am proof there is vibrant life on the other side. Best wishes for your procedure and recovery. Britta

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