Denise916'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: almost 5 years ago, Female, Age: 64, Stage I, HER2 Positive: No, ER Positive: No, PR Positive: No

  1. 1
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Diagnosed

    Oh No

    My cancer did not show up on a mamogram, sonar gram or mri. For the past 2 years I was always called back after my mamogram to repeat it and do a sonar gram. I had asked my primary care about 6 months ago if we should do a biopsy. She assured me that I did not have cancer. In January I was called back after my mamogram for the usual repeat and sonar gram, but this time the radiologist ordered an mri because of my history. I got a call from my PCP that the mri showed differences from the mamogram in the right breast . Again I asked her about a biopsy and was told not to worry. They were going to repeat the mri again in July. In March when I had my physical she noticed a mole on my right nipple. I had never noticed this. She referred me to a breast surgeon who upon examining my breast admitted that she had never seen anything like this. Maybe it was vascular, but she planned on removing it and testing for cancer, but she really felt it was not cancer. I asked her if I could have a biopsy and this wonderful doctor said yes. She thought peace of mind was very important. The day before I turned 59 I went for my biopsy. Three days later I went to the doctor's and she told me I had breast cancer. DCIS stage 0.

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  2. 2
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Lumpectomy

    Procedure or Surgery

    The surgery didn't seem like a big deal. Not a lot of pain afterwards. Biggest problem was a reaction to oxycodone. Severe heartburn pain that brought me to my knees. Other than that I was fine with extra strength tylenol.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Diagnosed

    Oh No

    When I went back for my follow up with the breast surgeon I was expecting to hear that the cancer was gone since it was supposed to be only in the duct. The pathology report showed that my margins were not cleared and there was some micro-invasion in the tissue so I would have to go through another lumpectomy. This surgery was scheduled for the following week. My cancer was also a grade 3. My surgeon referred me to the oncologist.

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  4. 4
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Health insurance issue

    Oh No

    When a referral was made to the Oncologist we found out he was not in my insurance network. We wrote a letter requesting that I be able to see him because of the multi team approach and that he was located only 20 minutes from my home. They denied me so we appealed. Denied again, but decided to use him anyway since there were out of network benefits. It would just cost us more. Both my husband and I agreed it was best to see him and we could do without some "luxeries" in order to pay the difference.

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  5. 5
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Lumpectomy

    Procedure or Surgery

    The second lumpectomy went will although I was more nervous the second time around. When I went for my follow up they told me the margins were still not clear. Would need another surgery to clear the margins. This type of cancer is not visible to the naked eye. The surgeon goes in and removes a certain amount of tissue. It's a guesstimate. I would continue to see the oncologist and the third surgery was scheduled.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Biopsy

    Procedure or Surgery

    I received a phone call from the surgeons office. The pathologist looked a my mri films because of the difficulty in clearing my margins. There was a mass in the front of the breast that did not look like cancer. However they wanted a biopsy to confirm it. The biopsy came back no cancer, but the pathologist did not want to hang his hat on it because of my history.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  7. 7
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Emotional and Upset

    Oh No

    When I received the phone call I got very upset. My thought was just to have a masectomy and be done with it. I did not want to deal with going through another lumpectomy only to be told that the margins were still not clear. I went in to see the surgeon the next morning to discuss this. She went over the biopsy with me and felt there was no cancer in the front of the breast and that we should be able to clear the margins this time and get on with the radiation treatments.

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  8. 8
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Lumpectomy

    Procedure or Surgery

    With this third surgery we all agreed that the surgeon should take more tissue than was planned. When I went for my follow up I knew by her face that the news was not what I wanted to hear. To the right of the biopsy site there was more DCIS. Again this did not show up on any testing. The next surgery was to be a masectomy.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  9. 9
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Decision Point

    This person has yet to add any details about this experience.

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  10. 10
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Oh No

    This person has yet to add any details about this experience.

    0 Comments
  11. 11
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  12. 12
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Oh No

    This person has yet to add any details about this experience.

    0 Comments
  13. 13
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  14. 14
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
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    Other

    Oh No

    After the biopsy my Doctor suggested another lumpectomy. I did not want to do this again. My suggestion was a mastectomy. With 2 lumpectomies behind me and still lots of questions about unclear margins I just didn't want to have another lumptectomy only to not have the margins clear. Before making a decision I spoke to my family. My son, who has a medical/phsycological background assured me that my feelings are very normal., Just don't wan't to do this again. Tired of the surgeries.,.....I want my life back. My husband was also on the side of my son and doctor. "What if this time they clear it?" Oh! another decision to be made. OK! We'll do it again.

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  15. 15
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Lumpectomy

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  16. 16
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  17. 17
    • Denise916
    • Experience with Ductal carcinoma in ...
    over 4 years ago
    Denise916's Avatar

    Lumpectomy

    Procedure or Surgery

    The third lumpectomy still did not clear the margins. This is what I thought the results would be. Scheduled the mastectomy. Decided to remove the "healthy" breast also. My husband and doctor tried talking me out of this. Since my cancer did not show up on mamograms, etc. I was not taking any chances of getting cancer in the left breast that doesn't show up on a mamagram. On August 17 I went in for my double mastectomy. I stayed in the hospital for 3 nights. Was glad that I didn't go home before this time. The first week was a little rough but not as bad as I thought it was going to be.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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