jasperjoan's Journey with Breast Cancer

Patient: Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 10 years ago, Female, Age: 69, Stage III, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    about 6 years ago
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    Oh No

    Breast Cancer! It's not in my family.....we have Alzheimer's and Osteoporosis!

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  2. 2
    about 6 years ago
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    Lumpectomy

    Procedure or Surgery

    The hardest part of my surgery was the anethesia. I was told I would have the opportunity to talk w/the Anethesiologist BEFORE my surgery....I did not have this. He introduced himself to me and immediately put me under. Because of my family history of Alzheimer's and Dementia, I have been told not to have Lorazapam (sp), Atavan (sp), or (I can't recall the 3rd one.....it'll come eventually). I was given the drug I was NOT supposed to have by the anethesiologist. I did talk w/him after I recovered and he says that the drug was ok.....it wasn't. I do not remember how I got from the surgery room to my car; I do not remember my sister helping my husband walk me to the car; I do not remember making a phone call to a friend when I came home. I am more afraid of the Alzheimer's than I am of the cancer. This really upset me that my medical team did not seem to want to include me in the team....just the object of the surgery. The actual breast surgery was fine.....my surgeon inserted a tube into my breast that was connected to a "ball" of medicine about the size of a hardball/baseball. I wore the ball in a "bellybag" around my waist. The medicine was controlled by the tubing and the long very thin needle that was inserted just under the skin of my breast. I did not experience pain. I wore the belly bag for about 3 days....don't remember the exact #. I have a small divit in the side of my right breast. I have not experienced any problems from the surgery. All my mammograms and checks have been good.

    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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  3. 3
    about 6 years ago
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    External radiation

    Radiation

    Radiation was the hardest part of my cancer journey emotionally. I followed all care instructions and I was NOT burned. However, the emotional trauma threw me into PTSD. I did go through counselling for this experience. The first day I went to the radiation center there was no one in the office area. After a 15-20 min. wait people started gathering in the office. No one came to me or to the window to acknoledge me. I fianlly went to the window and asked if I was in the correct place. A lady hollored over to me that she didn't recognize me, so she thought I was with one of their patients friends. She brought me a clipboard and told me to read the consent, sign it, and leave it at the window. I did NOT want to have tatoos or pictures made of my breast. The office personnel were sitting on the desks and in chairs laughing and chatting away. I finally went to the window to ask about how I could sign that I didn't want those procedures. The receptionist hollored over to me just to sign it and leave it at the window. I realize now that because of the unprofessional way this office was conducted and my own uncertainties about cancer and radiation, I had already slipped into PTSD. I went back to my husband and told him that I didn't want to sign it since there wasn't anywhere on the form to mark yes or no for the tatoos and pictures. Since we thought that the delay was because I didn't sign the form, he told me to sign it and then tell the dr. when I got to the exam room. I signed it. When I was taken to the exam room, a gentleman took my vital signs and chatted with me for a while. Then he left the clipboard with me and left the room. After a long wait, the dr. came in. She talked with me about her personal life, but she never really explained the radiation procedure. She told me I would have X number of treatments, 5 days a week for X weeks. I would need to go in on a certain day and they would align me for the treatments. I kept thinking that there was something I wanted to talke with her about, but as I didn't have the consent form with me, I didn't remember what it was. When I came back for the alignment, I was not offered a dressing room or area. I had to undress in front of the techs and remain stripped from the waist up for the alignment process. They told me that when I came back they would tatoo me where the colored marks were. I told them that I would not be tatooed. They told me I had to be. I said I did not have to be, that God tells me not to have tatoos, and I won't have them. They told me that I wouldn't be able to keep my marks....I would be tatooed. I came back the next week with my Bible marked with the Lev. passage where God tells His people not to be tatooed. A man argued with me about this decision. I later learned he was the director of the center. I told him that I would be able to keep my marks, but that I would not disobey God and have tatoos. I did not wear a bra while I was going through radiation....I wore loose, soft clothing, took baths instead of showers, so that my marks would not wash off. Radiation was the most humiliating part of my cancer journey. I have since talked with other ladies who have had radiation. They all had dressing rooms; robes; only had to bare the area being treated. My insurance company told me that the facility violated several HIPPA laws. They asked me what I wanted to do. I knew that I was not emotionally stable enough to drag this through court. I did not want to sue. I just wanted to be treated fairly, kindly, and with dignity. Although I had said that I did not want trainees involved with my treatment and my paperwork had NO TRAINEES written across the top of the first page, 2 were. When the office mgr. asked me how I knew they were trainees, I told him because they were dressed in green uniforms. He then said "They didn't touch you, did they?". I said no, but that they and their insturctors were in the computer room in front of the radiation room, very much involved with my treatments. The brunette was in the room with me at least 3, maybe 4 times. Once she practially had her nose in my rt. breast, then she stood at my feet, then at my left side. The blonde did not come in the treatment room, but stayed in the front room with the techs and the computers. It wasn't until I was almost halfway through my treatments that I learned they had a camera on me so that all who were in the computer room could see me. When I said I didn't know that they had a camera on me, one of the techs told me that she had told me they could see me. I said that I thought just she was watching me through a window. Her comment was "Oh, I forgot that your generation doesn't know about computers." In talking with other cancer survivors, I have not found anyone who was treated as callously and rudely as I was. Should I have another cancer and have radiation treatments, I now know what to expect; questions to ask; etc. I would never go back to this center or to the one that this dr. has since joined....if I were to see the office manager at another center, I would not go there either. Fortunately, other ladies I have talked with have had kinder, professional treatment from their radiation centers. I believe this center is the exception rather than the rule. My advice to anyone going through radiation would be to talk with someone who has had a similar cancer to yours and have them talk you through their experience. Have one of them go with you to your initial radiation visit. I would also advise cancer survivors to talk about their experiences so that they can be encouragers and informers.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    about 6 years ago
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    Drug or Chemo Therapy

    I was initially on Arimidex, then Aromasin. I experienced much confusion with both drugs. The worst thing I did was throw away my diamond earrings that my wonderful husband had given me for Christmas several years ago.....I thought they were rhinestones.. After I was off the Aromasin for some time, I began to remember things. when I remembered the earrings I cried for days. My husband was so very kind. He told me that I am more important than the $ or the studs. He has offered to buy me more, but I said no. I still forget directions to places....although that is getting better. The longer I am off the chemo pill, the better I am mentally. A friend who lives in another state told me that the friends she has who took the pill are having the same confusion issues that I have had. She says that they don't seem to be getting better. My oncologist finally told me at my last visit that some other patients are experiencing the same confusion I have had with the chemo pills. Until then, it was my understanding that she did not believe the confusion was connected to the pill. My emotions were all over the place while I was taking the pill. My husband had my GP check my for Alzheimer's.....I scored 30 out of 30, but it was after I had stopped taking the chemo pill. She said that she now has a baseline to check me against should I ever have concerns in the future. She also said that of all the patients she has given this test to, I am the only one who answered one question the way I did......She held up an object and asked me what it was. I answered "ballpoint pen".....everyone else says "pen".....I told her I grew up with fountain pens and ballpoint pens.....that is a ballpoint pen. She assured me that my mind is ok. Because I do not have good report with my oncologist, and because she sent me to a radiology group that my insurance company told me violated several HIPPA laws, I am changing oncologist.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  5. 5
    about 6 years ago
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    Radiation

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

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    almost 6 years ago
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    Confusion

    Side Effects

    The arimidex and aromasin caused me to have a great deal of confusion and memory loss. Now that I have refused to con't taking either or try a 3rd, my memory is improving. My husband says I am better and that he was really worried about me when I was on the meds.

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  7. 7
    almost 6 years ago
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    Decision Point

    I was diagnosed with breast cancer after an annual mammogram. The breast surgeon gave me the option of lumpectomy or masectomy. Because my tumor was less than a cm and all markers prior to surgery indicated that it was treatable, I chose lumpectomy. There were no cancer cells in the margins or lymph nodes....the tumor was slightly less than a cm., I do NOT have cancer in my family. All mammograms, etc. since my surgery have been "good"....nothing has shown itself, no tenderness, no changes in bloodwork, etc.

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  8. 8
    about 3 years ago
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    Radiation

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

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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