javert2's Journey with Breast Cancer

Survivor: Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 7 years ago, Female, Age: 54, Stage IIB, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
    javert2's Avatar

    Diagnosed

    Oh No

    The doctor who did my surgical biopsy was Vietnamese and spoke perfect English but with a beautiful, lilting accent. I guess I was in deep denial, because I had somehow convinced myself - as I awoke from that procedure - that everything was okay now...they had removed the "problem" and I was back to normal. My family, who I found out later had already been informed of the diagnosis, were cracking jokes with me as we waited for the doctor to come around. When he came in, some of his first words were: "It is a cancer...". He said the word "cancer" in such a beautiful voice that I was having trouble grasping it. He continued with more information - the tumor was much larger than expected and he hadn't removed it....and the rest was lost. The next couple hours were a blur - the nurse was putting me in a wheelchair so I could go home. She was looking at me sadly and she patted my shoulder. My family walked behind, no longer laughing. The shock was severe and it took me days - or weeks even - to get my mind around the reality that I HAD CANCER. My only thought was getting this thing OUT of my body and the waiting that followed in the next few weeks was agony.

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  2. 2
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
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    Deciding about surgery options

    Decision Point

    After what seemed like an eternity (but was actually about 4 weeks) we met with a team of doctors at UAB Breast Center - including a surgeon, oncologist, and radiologist. They said I had invasive lobular carcinoma - a breast cancer that only 15% of women get. It is called the "sneaky" cancer because you can have it a long time without detecting it. It did NOT show up on any mammogram. Of course, this added to my fear that by now it must've spread to my entire body. They gave me their recommendation - a mastectomy followed by an undetermined course of treatment. They were giving us so much information that my husband and I were both furiously writing. They said I could opt to have both sides done or just the affected side. They said their team also included a plastic surgeon who could do reconstruction in the same surgery and they set up my appointment with him. I was so overwhelmed by all the information and decisions that my head was spinning for DAYS. I later met with the plastic surgeon and there was more choices: which kind of reconstruction. This whole process of meeting with doctors and discussing options took about a month. During this time, I had all kinds of tests: MRI's, CT scans, and bone scans. I finally made the decision to keep the unaffected breast and to have a latissamus dorsi reconstruction (using an implant and tissue from the back). I was told that treatment would be discussed after the surgery - when we had all our information.

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  3. 3
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
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    Mastectomy

    Procedure or Surgery

    In April, 2010 I went into surgery at UAB medical center, surrounded by my family and friends. The procedure I had included a sentinal node biopsy, mastectomy and reconstruction, and took about 9 hours. When I began to wake up, I was sick and threw up a few times. I was in and out of it for the next few hours but was aware that my mom and sister were at my bedside. I was told that NO lymph nodes were involved, they got the entire tumor and I had clean margins. By early the next morning, I was in the shower - with mom's help - and over the next few days, I walked the halls regularly, trying to build up my strength. My 10-year old son had given me a little pink bear that had a breast cancer shirt on and I clung to it every night., missing my sons. I had to stay for 3 days, during which the worst part was these horrible, painful shots they gave me in my thighs every 3-4 hours and lugging the IV everywhere I went. Once I got home, I had plenty of time and space to recover at my own pace and lots of support from my family. I had about a month to recover before they hit me with the treatment plan.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
    javert2's Avatar

    Avastin

    Clinical Trial

    In conjunction with my chemo treatments, I was offered a clinical trial of Avastin. I was told that the theory was that it would increase the effectiveness of chemo and my odds of survival. I signed on. After every chemo session, I would go to a different location in the hospital for a round of Avastin via IV that took another hour or hour and a half. During the trial, all I knew was I was in either group A, B, or C. Group A was receiving Avastin and when chemo ended, they would continue to receive it for 6 more months. Group B was receiving Avastin and it would end when chemo ended. Group C was receiving a placebo. Even my doctors didn't know which group I was in. We all found out the week before chemo ended that I was in group B. The only side effect of Avastin was a nose bleed. My nose was constantly full of blood and I had to blow my nose all the time.

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  5. 5
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
    javert2's Avatar

    Treatment plan

    Decision Point

    About two weeks post surgery, I once again, I met with my oncologist. He told me that my tumor was ER/PR positive and HER2 negative. He said it was much, much larger than expected: 17 cm (or about 6 1/2 inches!) I couldn't understand how a tumor of that size (basically my entire breast) had not metasticized. He said it was very random....he had seen huge tumors like mine which had not and then 1/2 cm tumors that had spread. Because of the size, he told me I would have to have intense treatment in three stages: chemo, radiation, and then hormone therapy. The course he laid out was 16 rounds of chemo, 38 rounds of radiation, and 5 years of Tamoxifen. It was too much to even contemplate and I broke down in his office. This was actually the first time of many that I broke down in front of him or his assistant. Lucky for me, they are both extremly kind and encouraging and every time it happened, they embraced me and kept me going. My kindly Italian doctor told me firmly that I did not have a choice. I WOULD do the treatment and it would save my life. I learned then that human beings truly do have a survival instinct and will do whatever is necessary to live. So many times through this experience, people have told me how brave I am - but it isn't bravery. It is survival instinct. You have no choice so you do it.

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  6. 6
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    After surgery and hearing my treatment plan, I began to try and mentally prepare myself for chemo. You hear horror stories and that's all I could think of. One of my paramount concerns was my hair. I have always had long hair, almost to the waist, and it's always been my best feature. I felt totally petty and vain because my hair was all I could think about. I took pictures of it and I basically had to sit and "grieve" over losing it. I did this mostly in private because I felt foolish. It just felt like cancer had already taken so much from me....I still had so much to go through. Why did I have to also lose the hair I loved?? It didn't seem fair to me and I was a little XXX about it. During this time - and at many other moments during this journey - I felt totally alone. The people who loved me the most: my husband, my mom, kids, best friend - as well-intentioned as they were and as much as they tried, they just COULD NOT understand all these feelings and fears. I did have friends who were survivors and they helped the most. I also had a firm faith in Christ, which was the only thing that kept me sane and moving forward. I began chemo on May 25, 2010. My husband and one of my survivor friends went with me. The first four rounds would be Adamycin/Cytoxin - aka the "red devil", followed by 12 rounds of Taxol. I went every 2 weeks. I sat in a room that first day surrounded by bald people in reclining chairs and was giving a crash course in chemo. They showed me a DVD about what to expect. I fought back tears and they said it was ok to cry. I kept thinking that the next time I came for chemo, I'd be bald too. They give you some anti-nausea and other drugs before chemo so after I got my IV, I got those first. For the AC drugs, a nurse has to sit with you and slowly "push" the medicine in your IV. I kept staring at this huge red vial that she was pushing in my veins, thinking..."she's poisoining me right now." The nurses are very sweet in chemo. They offer you warm blankets and snacks. It really helps if you stay very well hydrated - particularly in the day or two before treatment - so they can get the IV in easier. (I had "good veins" before chemo so they said I didn't need a port. My veins held out - barely - through all of it. But I no longer have "good veins.") I've also heard that if you munch on ice during the treatment, it makes you less likely to develop the mouth sores a lot of patients get. I don't know if that's true, but I never got them. After that first treatment, I felt weak. I got up to go to the bathroom and my pee was red. They gave us a prescription for nausea and I waited in a chair while my husband got it at the on site pharmacy. It seemed to take a really long time and I wanted to lie down really bad. By the time we got a few miles away, I began to feel weird and told him I thought I was hungry. We stopped at a Subway and I gobbled my sandwich down and felt better. We live about an hour and a half away and I went to sleep on the way home. I awoke about 20 minutes from home, sweating, pulse racing, really sick. My parents were standing in my driveway when we pulled up, worried looks on their faces. I hopped out of the car and threw up in the yard. I then went in and threw up in the bathroom. It was violent, projectile vomiting - like nothing I'd ever experienced. My mom was there with a wet cloth, just like when I was little. Over the next two days, I pretty much did nothing but vomit. I was out of my mind with the nausea. I couldn't get a second's relief and I thought I was dying. I have never known such misery. I just kept thinking.... there is NO WAY I can go through this every two weeks! The next morning was my son's "awards day" at school and I tried to go. I took my anti-nausea and somehow made it through the short ceremony before having to run out and back home. After the second day, I called my oncology asst. and she assured me that they would get the nausea under control with stronger meds. I was so afraid to trust that but knew I had to have the treatment. I felt better on the third day and slowly improved to "almost" normal by the next treatment. I had been told that my hair would come out on Day 14 after that first treatment. I could not bear the thought of seeing those long strands on my pillow or pulling them out in my hand. Instead, I opted to get rid of it myself. It made me feel like I was in control instead of the cancer. On Memorial Day, 2010, my hairdresser, who's also a good friend, came over to my house. The plan was to shave it off. We took a chair out of the porch. She put in up into dozens of tiny pigtails and cut each one off. She, my husband, and I laughed and cried through the whole thing. My kids chose to stay upstairs until it was done. When it came down to it, she said she couldn't stand to cut it all off and instead just cut it really short. My husband loved the new cut but we only got to admire it another week or so. Then my head got itchy and it began to come out. Pretty soon, it just looked all "patchy" and I got annoyed with that. I sat and just pulled the little tufts out until it was all gone. True to the assistant's word, the next treatments were better. They began to give me Zofran for nausea (by IV). After each treatment, I felt weak, sleepy, and slightly nauseous - but the violent sickness blessedly did not return. The timing was good because - since I'm a teacher - it was the time of year when I wasn't working. Usually summers are when I get all my big projects and closet-cleaning done, but that summer, the couch was my best friend and I did basically nothing. I started back teaching in the fall and was only absent once every couple weeks for chemo. My employers were so awesome and my coworkers were extremly loving and supportive. When I began classes in August, as I saw each new class, I went ahead and confronted the "elephant in the room" and just said, Yes, I'm going through chemo and I'm bald. Then, I'd take off my wig and show them and that was that. Kids are great that way. In July, my family took their annual trip to the beach. I had just finished my last AC treatment and was taking an extra week break before beginning Taxol. It was nice but different than our other trips. I was really weak and found it difficult just to make the trip out to the beach and once there, I easily tired. I also had to put sunblock on my head. Not that was just weird. Everything went fair through the rest of treatment with a couple exceptions. Once they started giving me Zofran, I got instantly and severely constipated. No one warned me that would happen and by the time I realized how bad it was, I had a bowel impaction. I will spare details but it happened twice, and was actually worse that the chemo itself. It was a nightmare. Then, in September, I awoke one morning with a swollen eye. I thought I must be having an allergic reaction to something and went on to work. It continued to get worse and by the end of the day, was completly swollen shut. I went to the doctor and was admitted to the hospital but initially they didn't know what was causing it. I was transferred the next day - by now it was swollen the size of a softball - to a eye hospital where they diagnosed me with MRSA (staph) infection. I had somehow contracted it due to my low immunity. It was by now very serious and potentially life-threatening. I was given strong antibiotics, via IV around the clock for the next week. I missed my next two chemo treatments - which just delayed the end of that. It took weeks for the swelling to go down and I joked that I looked like the hunchback of Notre Dame with my bald head and swollen eye. I had to joke or it would've been too depressing. The remaining treatments of Taxol were easier than the AC treatments. The one side effect that bothered me the most was that it caused me to develop neurothopy in my fingertips and feet. Sometimes, I'd be holding a paper or something and just drop it because my fingers were numb. And the toes were worse....all tingly and uncomfortable. I had restless legs at night and I couldn't stand any contact with my feet. Like walking barefoot was awful. It felt like little shocks were shooting up my leg with every step. I was told this side effect might or might not go away after treatment. It's now been two years and I still have it - though not as severe. I finished chemo on November 2, 2010 - five months after it began.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
    javert2's Avatar

    External radiation

    Radiation

    After chemo, I got about a month "off" before beginning radiation. I was very fortunate because we have a cancer treatment center in my small town. That meant that I could get my treatment there instead of traveling the hour and half that I had had to go for chemo. I would get up an hour earlier than usual and while my children slept, drive over and get my treatment. It usually only took 20-30 minutes and then I'd return to get ready for work and get kids to school. The treatment itself is completly painless but the fatigue it caused was progressive - getting worse with every treatment. By the time radiation concluded on Jan. 25, 2011, I was so weary, I could barely put one foot in front of the other. I was easily winded and had to stop a couple times, just going up one set of stairs. I felt like a 90-year old woman. This side effect took a long, long time to get over and even today, I don't feel I'll ever be the same.

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  8. 8
    • javert2
    • Experience with Breast Cancer
    over 4 years ago
    javert2's Avatar

    Finished treatment

    Celebration

    When I finished treatment in Jan., 2011, my friends threw me a big party and we celebrated! I got a pet scan that March and was told it was all clear! To celebrate, I did something I thought I'd never do....I got a tattoo! Every day is a gift and yes, I worry that it'll come back. But I made it through and I know I can do it again if I had to. Right now, I'm just trying to live my life, enjoy my family and every day I'm given, and help everyone I can along the way.

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