cinnamonsmile's Journey:

Survivor: Breast Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 6 years ago, Female, Age: 48, Stage 0, HER2 Positive: No

  1. 1
    over 5 years ago
    cinnamonsmile's Avatar

    Double Mastectomy

    Procedure or Surgery

    I had a bilateral mastectomy with node dissection on 1/11/11 for DCIS. Since it was contained within the milk ducts, I didn't need rads or chemo. But, I woke up in severe pain, lasted for months. I began taking Gabapentin for nerve damage /neuropathy/PMPS. I saw a physical therapist for about 4 weeks but she was not experienced with this. Finally, I received a referral to see a wonderful pain clinic. I began getting nerve block shots in the neck, occasional cortisone shots for the areas that the nerve blocks missed and I saw marked improvement. They also increased my Gabapentin to 1800 mg/ day and added amitriptolyne, 25 mg at bedtime, to help with pain, depression, and sleep. I was finding sleep even more difficult even six months post surgery because the pain would wake me up when I'd roll over (my partner also hear me moan/groan when I'd roll over in my sleep)I also found two therapists who job share who are working on my scar tissue and pain issues. The pain clinic also has a superb pain counselor who is helpig me learn to live with the pain, minimize it, etc. One of the physical therapists also not only works on the physical aspect of my pain, but mentally as well. It took six or seven months to get this wonderful pain team. At this point (August 2011), I still don't feel that I, personally am in charge of my pain, but I take comfort in knowing they do. I may be cancer free, but not totally pain free. I still need to modify and limit daily activities, but I can see a light in the tunnel.

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

    Deciding Lumpectomy vs. Mastectomy

    Decision Point

    After my lumpectomy in November 2010, the surgeon drew a picture of my right breast's milk ducts. I was full of two types of precancerous cells and DCIS. It looked like to me that my body was a good growing ground for all three. I had a gut feeling that I would not get clear margins the second time around either, so I pretty much decided right there in the office that I wanted a unilateral mastectomy. I did think about it over night, but I knew what to do. Prior to the mastectomy, the surgeon ordered an mri of both breasts. While we were waiting in her office for the test results, I told my partner that if anything was even SUSPECTED in the left breast, I did not want to go through another biopsy, lumpectomy ( mined was painful and took me 6 weeks to fully feel better, but even the actual site was tender three months later), I would just choose a bilateral mastectomy. The surgeon came in and told us that there was a suspicious area deep in the left breast that the mammogram didn't pick up. I was ok with that. However, it turned out to be PASH, a benign tumor. The only cure for PASH is surgical excision or it will just continue to grow. My decisons were easy for me to make. But the recovery was not. I learned not every breezes thru surgeries. Some are fast healers, some are slow. So I am hesitant to tell anyone that they will breeze thru surgery...you never know...

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  3. 3
    over 3 years ago
    cinnamonsmile's Avatar

    Post Mastectomy Pain Syndrome and LE

    Oh No

    I woke up with severe PMPS on 1/11/11 after my BMX with sentinel node and 1 axially node removed. I have had extensive pain treatments since the summer of 2011 at a pain clinic; have had and still have to some extent severe scar tissue adhesions; and finally got the dianoses of LE in October 2012 (after living with it for about a year). My pain is so bad it prevents me from living normally even after 2.5 years.

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  4. 4
    over 3 years ago
    cinnamonsmile's Avatar

    Lymphedema

    Side Effects

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

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  5. 5
    over 3 years ago
    cinnamonsmile's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

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

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