GetMyLifeBack's Journey with Breast Cancer

Patient: Breast Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 6 years ago, Female, Age: 40, Stage I, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    over 4 years ago
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    Diagnosed

    Oh No

    At 33 I never expected to be diagnosed with Breast Cancer. I went to the doctor for a sinus infection at the behest of my office mate and figured, why not ask about this lump that I felt a couple of months ago and hasn't gone away...I was sure it was nothing. My doctor was sure it was nothing, just a cyst because if felt so round. I was scheduled for an ultrasound and at first they could not see anything. The found it, had the doctor read it immediately as I waited and then sent me to the Mammography clinic. I was the only one in there that didn't have grey hair and they all immediately turned to me as if they knew there is only one reason I could possibly be there. I hated everyone staring at me and just looked at the ground wanting to disappear. They had me take a diagnostic mammogram and take it directly back to my radiologist. After a few minutes he took me back into his office and showed me the mammogram of this white thing that looked like a starburst. I didn't know much about breast cancer at the time but I new that irregular edges was a sign and I was in shock. He told me there would be an ultrasound guided biopsy and I was scheduled to come back in a week. He asked me if I had any questions and I said not yet but I am sure I will after the biopsy.

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  2. 2
    over 4 years ago
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    Ultrasound guided core needle biopsy

    Procedure or Surgery

    This was soooo painful. They put lidocaine in me but it did not go deep enough so when they went to get the sample it hurt so much. I am sure they thought I was going to hit the doctor because the nurse grabbed my hand. While I was getting dressed they left the samples in the room. I am not sure if that was on accident. I peered into this little jar of samples that looked like pink and white pencil lead and thought...this is no cyst. I was terrified as I waited for the results.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    over 4 years ago
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    Decision Point

    So, I wait a week for my results. I am, of course, a wreck and going through this really reveals how people you consider close respond to crisis. Some friends were amazing while others ignored it entirely. I was waiting and waiting for a call and when I did not get one, I called the hospital and they told me I had an appoitnment with general surgery on that day at 10:30. I knew there would be only reason they would schedule an appointment without me so I ran out of work crying and no one knowing what was going on. Thank God I had the kind of job where I could do something like that. I got to the surgeon, who was, by the way, awesome, and with my tear stained face she looked at me and asked me if I knew why I was there. Of course I knew! She went over options and the pros and cons of lumpectomy vs mastectomy vs bilateral mastectomy. My head was spinning as I took notes. She talked about genetic testing, radiation therapy, chemotherapy, answering all of my questions very well. As the days passed, I would e-mail her and call her almost daily with the various minutia of my decision. I had a horrible breast care coordinator but at least she got me the camisole I needed for post op. My general surgeon introduced me to my plastic surgeon who was not only amazing and I had the utmost confidence in, but was extraordinarily HOT. He talked to me about reconstruction options, lumpectomy etc telling me the pros and cons of each. Ultimately, I decided on a bilateral mastectomy with immediate reconstruction and silicone implants.

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  4. 4
    over 4 years ago
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    Sentinel lymph node biopsy

    Procedure or Surgery

    I had a blue radioactive dye injected around my areola so that it could drain into my lymph nodes. The injections were painful but by the time I was at this point I was getting used to pain and people doing painful things to my breast. I was fortunate and it only drained to one lymph node so only one node had to be taken out and biopsied. Thankfully it was negative. I am glad I had this procedure because I am very active and the possibility of never being able to be squeezed, poked, etc on that arm for the rest of my life was incredibly depressing. After the procedure my breast care coordinator told me that I could never lift anything heavy again, etc and defined heavy as over 10-15 pounds. At the time, I was lifting very heavy weights several times per week and I began to cry. She told me "a lot of women stop tending their roses but you can still vacuum." I was 33!!! Good grief!! I then asked her the risk of all this happening and she said since I only had one removed, only 2% chance...I was infuriated that she made it sound like I was going to have all these complications and it was such a low risk. I did not make any changes in my lifestyle and I have had NO complications with lymphedema.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    over 4 years ago
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    Decision Point

    At this point, I knew it had not spread beyond the breast and so the stage depended on the size of the tumor only. I had to decide what time of surgery to have and went with the bilateral mastectomy. I am happy with the results for the most part.

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  6. 6
    over 4 years ago
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    Breast Reconstruction (Implant)

    Procedure or Surgery

    I had my first surgery on December 14, 2010 less than two months since my diagnosis. It was so scary and my first major surgery. I used a guided imagery for surgery MP3 I found on itunes for weeks before my surgery and it really helped me calm my nerves and make peace with the procedure. I also spoke with the anethesiologist about using music therapy and guided imagery duing my surgery. During pre-op he was very supportive of the idea and thought everyone should do this but also told me that it wa up to the anesthesiologist on the day of my surgery. I was so happy to see him when he came in to prep me for surgery on the day of my mastectomy. I reminded him of my request and he was of course willing to let me listen to my guided imagery and music throughout the surgery. I definitely recommend this to anyone anxious about ther surgery. I went with the implants which meant months of saline injections and these massive, hard expanders which my roomate called "robo boobs...you never know when they are going to shoot out lazers or something." They were massively uncomfortable. I could feel them against my chest wall and when I started exercising again they made push ups and pull ups very akward and I could feel blood coursing over them when I ran. I couldn't have a good night's sleep until they were out. They were painful for a fewdays after each injection. I had lost a lot of weight (by choice not by treatment) prior to the surgery and when you lose that much weigh your boobs suffer (sadly) so I took this opportunity to have the boob job I want and went bigger than I was originally. I think this surprised and tickled my surgeons since most women getting my operation are older and were not as concerned about getting a boob job during cancer treatment. I figured, why not if I have to get them taken from me, the replacements better be what I want them to be!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  7. 7
    over 4 years ago
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    Decision Point

    I asked my oncologist for an Oncotype score. This was not done automatically and I highly recommend having it done. I was fortunate to have a low score (14) and was spared chemotherapy although my first oncologist wanted to do chemotherapy regardless. Fortunately I had already read up on oncotyping and knew this was not a good choice for me.

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  8. 8
    over 4 years ago
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    Breast Reconstruction (Implant)

    Procedure or Surgery

    I had my silicone implants placed in June of 2010. The procedure was easy and I was out the same day. I discussed and read up on the silicone before my surgery and I knew that they would provide the look and feel I wanted. I had a nipple sparing mastectomy but they could only save the nipple on my right (non-cancer) side because there were pre-cancerous cells under the nipple of my left side and given my age and the fact that cancer in young women tends to be more aggressive, they could not save it. I knew that I would not want the reconstructed nipple or the areola tattoo because it would never match my existing nipple (which by the way is now constantly erect). I chose to have a fairly large tattoo that covers all of my scars from the initial core needle biopsy to the sentinal lymph node biopsy to the final scar across my chest. I am very happy with the result but I still miss my nipple.

    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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  9. 9
    over 4 years ago
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    Hormone therapy

    Drug or Chemo Therapy

    Nothing really prepared me for menopause. Before my diagnosis I was doing brazilian jiu jitsu, running, lifting weights, doing Muay Thai, and surfing. I had ridiculous energy and never got tired. After starting my medications, I had hot flashes, night sweats, was sleepless (although this may also be due to the expanders in part...XXX are they uncomfortable). I have gained 30 pounds and I am struggling to get any of it off. My trainer thinks I am not working hard enough or not eating right but I am doing the best I can and it just isn't working. I shouldn't complain too much...I mean I didn't have to do chemotherapy due to my low Oncotype score.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  10. 10
    over 4 years ago
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    Bone strengthening drugs

    Drug or Chemo Therapy

    I am taking Zometa to offset risk of osteoporosis from Zolodex for the first two years of treatment. I experienced bone pain after the first infusion and it was horrible but did not last long.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  11. 11
    over 4 years ago
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    Healthy Weight Loss

    Celebration

    As predicted by fellow survivors, after my hormones balanced, I started losing weight...effortlessly. Not that I don't eat healthy and exercise but still....I was doing that all along and it didn't help. Finally things are going in the right direction and that is very motivating.

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  12. 12
    over 3 years ago
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    Other Care

    I feel like I have lost motivation. I am in remission and when this all started I told myself and any one who would listen that I wanted to get through this and go back to living my life like nothing ever happened...but I kind of feel that if I do that, I would have missed the point entirely.

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  13. 13
    over 4 years ago
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    Making Meaning

    Celebration

    I am so excited! I have made a career shift because of my journey and I am working as an oncology social worker. Next week I start a support group for cancer survivors under 40 and I am networking like crazy to make things happen at my hospital. I get frustrated that it will be a long road until things are how I want them to be but it is definitely giving meaning to my experience.

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  14. 14
    over 4 years ago
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    Weight gain

    Side Effects

    I really hope I lose weight again. My other side effects have been managed through my diet and I can tolerate them. My fatigue is awful but I am working on that.

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