cinnamonsmile's Journey:

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

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 48, HER2 Positive: Don't Know

  1. 1
    over 5 years ago
    cinnamonsmile's Avatar

    Mastectomy

    Procedure or Surgery

    I had a bilateral mastectomy with snb and alnd. I awoke in terrible terrible gut wrenching pain. What I did not know, is that I had a severe case of post mastectomy pain syndrome, which a year later I still suffer from and receive care from a pain clinic. After only two months, I acquired severe scar tissue adhesions across the entire chest area. It wasn't until I found two occupational therapists five months after the initial surgery, that I began to find relief. It took just shy of 6 months to release the scar tissue. I still have problems with that as well.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  2. 2
    over 5 years ago
    cinnamonsmile'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
  3. 3
    over 5 years ago
    cinnamonsmile's Avatar

    Lumpectomy

    Procedure or Surgery

    I had a ultra sounded guided, vacuum assisted biopsy of the breast in November 2010, which showed ADH. The radiologist was not convinced there was not cancer lurking somewhere in the large lump (mine was the size of a breakfast sausage link). I had a lumpectomy the day after Thanksgiving 2010. It was very painful afterwards. Pressure and ice packs helped a lot. I was unable to afford a sports bra and looking back, it would have been wonderful to have one, as the pressure on breast while bending hurt like the dickens. Had I had a sports bra, it would have held the breast in place (I was a D almost a DD).

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    over 5 years ago
    cinnamonsmile's Avatar

    Pain

    Side Effects

    I live with severe post mastectomy pain syndrome/neuropathy from the SNB and ALND. I am on several medications and receive IV lidocaine infusions every 6-9 weeks for pain management. I also utilizied a pain counselor who helped me learn to live and do activities to decrease pain. There is actually a pattern we follow at first of not feeling good, not doing much, feeling better, overdoing it, then not do much. Life is continually a learning lesson in what and how much activity I can do. The left arm has really calmed down over the past 15 months. Pain is not totally gone, but improved. The right side is still a bugger...And I still get those wonderful shocks...Some of those shocks actually feel like I am being stung be a bee!

    0 Comments
  5. 5
    over 5 years ago
    cinnamonsmile's Avatar

    Decision Point

    The decision to have a mastectomy was very easy for me. The surgeon drew a picture of my breast and milk ducts on the white board after the lumpectomy. I was riddled with ADH, another type of precancer (can't remember the name) and DCIS and that it would be in one spot, skip a spot, etc. I likened it to tornado damage..hits here, misses there. She gave me the two options lumpectomy plus rads or mastectomy. I knew right away I wanted a mastectomy. I thought about it over night but never changed my mind. I also wanted the least chance of it coming back. Based on my cancer profile, I figured my breast was a breeding ground for ADH and DCIS. I did not trust that a lumpectomy plus rads would give me the best chance. I was given a presurgery MRI. I had said that if they even SUSPECTED anything in the other breast I would skip the biopsy, lumpectomy and just get that taken off as well. The MRI showed a spot. It turned out to be PASH, a benign tumor whose only treatment is surgery anyway.

    0 Comments
  6. 6
    over 5 years ago
    cinnamonsmile's Avatar

    Problem with doctor

    Oh No

    Unfortunately, I was victim to many horrible doctors and staff. Not just for cancer. I now have no problem telling doctors they are fired and why. In 2007, I saw a breast surgeon for a green discharge in what later became the cancerous breast. Because on that day he could not get the discharge to come out he rudely dismissed me. I had told him when my boyfriend at the time would play or squeeze the breast the green discharge would emerge. His words.."well, tell your bf to stop it." I truly believe that had he done a duct biopsy he would have found precancer..... That is the just the first in a line of rotten doctors. REMEMBER THEY WORK FOR YOU!!!

    0 Comments
  7. 7
    over 4 years ago
    cinnamonsmile's Avatar

    Double Mastectomy

    Procedure or Surgery

    I had a vaccuum assisted core biopsy, lumpectomy, BMX with node removal.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  8. 8
    over 4 years ago
    cinnamonsmile'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