JVM491955 shared an experience
Radiation (External radiation ): Radiation was a difficult psychological experience for me, as I was about to have radiation on the same side my own mother had her own radiation for lung cancer treatment, but I will address that shortly. The treatment was physically hard also, as my fibromyalgia added to the very significant exhaustion I felt throughout its duration. The very first weekend of treatment I slept for more than 20 hours, and this was only the beginning.
The process leading up to the radiation was fascinating for me (I am a frustrated would be MD) from a scientific perspective. Being photographed, tattooed (which freaked out my husband, as he could not stop thinking about Nazi concentration campus, while it didn't bother me in the slightest since I could barely see them), being positioned on the table (with my right breast in a hole) while having the tattoos line up with the machine's lasers and having a mold made of my breast served to educate me about the process in ways I never imagined before I was diagnosed. Going through the dry run in the actual machine was also interesting to me, but I have to admit that the machine's giant "eye" scared the daylights out of me. All I could think about was my mother. I wondered, "Did Mom feel this way? Was she as scared as I am now?" I knew how she must have felt...I knew that she was terrified and for the first time in the decades that followed her death, I understood it all....the tears, the exhaustion, the depression, etc. I watched her endure.
I was initially scheduled for 6 weeks of radiation treatment but when I told the radiation oncologist that I suffered from fibromyalgia, he immediately reduced my treatment to four weeks. He told me that I would feel the cumulative effects of radiation treatment - monumental fatigue - from the beginning and throughout my treatment, as opposed to at the end of it for those that do not have fibromyalgia. He was right.
I arranged my treatments for 3 p.m. each day to allow me to continue to work, as I didn't want to take more time off and I desperately needed to feel somewhat normal. Although I was on a part time leave to cover the radiation, I slogged into work each day and coped with my very long commute very well considering what I was going through. I typically left the office at 1 p.m. and drove an hour and a half to a Sloan Kettering wing in Northern Westchester County in NY, about 25 minutes from where I resided. Once I was called in for treatment, I went through the required process: Spell my name and date of birth to the nurse that took me into the changing room and then wait with other women to be called. None of the other patients spoke to me, or if they did it was a rare occurrence, as they were as tense as I was.
On the table facing the eye of the machine on my left, I was placed in an awfully uncomfortable position: on my stomach, right breast in a hole, hands holding onto two handle bars in front of me, knees raised and placed at an angle. This adversely affected my fibromyalgia because lying in such a position and remaining still triggered stiffness in my body. I have to move with my fibromyalgia because if I don't I will wind up with a "flare", which causes extreme pain and stiffness throughout the body. But you can't move during the treatment obviously, and I had to stay still while listening to the LOUD noises the machine was making while I was being irradiated.
Because the technicians' were trained not to tell patients when they were starting, halfway through and finished, I felt as if I had no control in the matter and felt as if I was having a panic attack. Luckily enough for me, the treatment had finished and I actually didn't move like I thought I had. Once it was over with, I felt better but wondered if I could get through 4 weeks of it....I really wasn't sure if I could.
Each Tuesday I met with the radiation oncologist, who incidentally was the Chief of Radiation oncology at this branch of Sloan Kettering. He told me that he heard that I had panicked and asked me why I hadn't told him that my mother died from cancer and had also had gone through radiation. I told him that I didn't think it applied.
He asked me what he could do to make my treatment easier and I told him that I needed the technicians to tell me when they were starting, when they were half way through and when they were finished. I said I needed that to feel as if I were in control of the situation even though I knew that I wasn't. I told him that I needed to make the experience a positive one and shared that music would also help me get through what SEEMED to be an endlessly LONG experience, even though it was merely a 7 minute process. He said he would talk to the technician's as if they had done something wrong when they hadn't, so I told him I would talk to them myself as they were great and were doing their jobs well.
For my next treatment and all those that followed, I literally told the technician's to crank up the tunes...I said that they should play some rock music or jazz to distract me AND that I needed them to talk to me, which they did. It really helped me! Not only did I have a bond with all of the technicians because we talked about normal life stuff AND NOT cancer, but because I took control of the matter and did it MY way and on my own terms. I refused to be terrified by the machine's eye and I refused to feel like a patient. I had to feel like ME, a lively and fun loving person - not a patient.
Was I tired? Oh God yes. I was completely drained and worn out from every day of treatment. But I also had other side effects beyond the fatigue and the burned/reddened breast: sometimes I felt vaguely queasy but not enough to get sick; I suffered from constant brain fog throughout the treatment, which I think had more to do with fibromyalgia than the treatment itself. Fibromyalgia makes you feel foggy and unfocused, but radiation treatment worsened it for me. Sometimes the fog was so bad I would forget what I was saying to someone I was conversing with as my thoughts literally fell out of my head, which was embarrassing. The worst part? I had memory loss such that there are periods of my entire cancer experience that I can barely remember at all. I got through it...
JVM491955 shared an experience
Procedure or Surgery (Lumpectomy): My lumpectomy surgery went extremely well! In fact, I actually woke up laughing because I had dreamt about an old high school boyfriend that had contacted me a month before - literally days before I was diagnosed - and after 35 years of not speaking to each other. The nurses and my surgeon were giggling along with me, as I was giggling and babbling about him almost incoherently through the fog of the anesthesia. Once I fully awakened, I felt fine...no nausea (I always ask for anti-emetic drugs)...minimal discomfort...just fatigue.
I had taken a two month medical leave to cover the diagnostic procedures and the surgery, so during that time I can honestly say that I had minimal pain. Occasionally, I did feel twinges of pain but it was nothing that required me to take pain killers. In fact, I took no pain killers whatsoever during any of my surgeries that year. However, I could not drive; I could not lift anything over 10 lbs (including my cats), could not do my regular chores, and I had to make sure that I protected my breast from my cats, as they liked to sleep on me at night. (Imagine 6 cats sleeping ON you at night and during the day - they were taking care of me in their own ways, but surely didn't understand why walking on Mommy's right breast would hurt her. Pillows helped.)
All in all, I felt fine....was a bit stir crazy from not being able to do much given that I am a "doer", but I felt pretty good.
JVM491955 shared an experience
Oh No (Diagnosed): On March 25th, 2008, after three weeks of testing that included two mammograms and one exceedingly painful stereotactic biopsy on my right breast, I was diagnosed with Stage 0 Ductal Carcinoma in Situ breast cancer. I was shell-shocked and stunned, as it appeared from out of the blue because there was absolutely NO incidence of breast cancer in my family. While cancer HAD struck my family hard - my father survived testicular cancer when I was 10, but my mother succumbed to stage IV lung and bone cancer when I was 19 - I never expected that breast cancer would ever affect me. (If anything I thought that lung cancer might get me, as I had been a lifelong smoker long after my mother died, as I was foolishly rebelling against the cancer that took my mother from me far too soon.) Thus, the shock completely overwhelmed me, especially given that I was diagnosed with cancer the same age - 52 - my own mother died from it and on the same side, even though it was a different location.
To this day I recall that I pretty much left my body the instant I heard that I had cancer. I am normally an exceedingly detailed and focused individual; the kind of person who has the ability to recall facts or conversations with accuracy. But when I heard my diagnosis, I felt as if my mind and ability to focus drifted away. While the doctor spoke about the cancer and my future prognosis, which ultimately was good, all I heard in my head was my own scream: "I have cancer, I have cancer, I have cancer!!!!!" I heard absolutely nothing else and felt as if the floor beneath my seat had collapsed under me. I was falling through space, caught in a vise of terror so monumental I was adrift in mid air.
My doctor, a lovely young woman, didn't quite see that while I was present in body, I was not there in mind. Instead of giving me a moment to take it in, she kept babbling at a pace I couldn't keep up with, all while twisting a candy wrapper to stave off her own anxiety, which annoyed me. Through the haze of my horror and the din of my inner scream, I could only hear snippets of what she said, which pretty much sounded like this, "You have breast cancer but it's good! Yes, it is really, really good!" In effect, I heard but didn't hear; I understood but couldn't comprehend; I couldn't take it in, could not receive it, could not digest it. I wanted to run away. I wanted to hide. I wanted to disappear....I wanted my mother...I wanted my husband....I wanted to scream and cry and throw things. I wanted it to go away. I wanted to be anywhere but there in my MD's office.
Suddenly, my brain returned to me so when the doctor continued to babble on about how good a diagnosis I had, I snapped at her and said, "Could you just STOP for a minute, okay? Did you just tell me that I have breast cancer but that it was good?" She said "Yes, I did.." I hissed and said, "Well, I don't think so...", which I think scared her. I was angry and needed the doctor to be calm and help me digest the news that hit me like a ton of bricks, as opposed to sharing her own anxiety and need for constant pats on the back. (Yes! The MD needed me to pat her on the back and give her accolades about finding my cancer! While sharing my diagnosis, the MD constantly told me that she found my cancer...that if it weren't for her insistence that I get a mammogram (which I had not gotten in 19 months, with all due credit to my own rampant stupidity) I would have had invasive breast cancer...blah blah blah. I kept wanting to say,"REALLY? You need a pat on the back to stroke your ego while I am dealing with a cancer diagnosis." I never said that of course, but still, I never expected a doctor would need her ego stroked.) Once I calmed myself, I asked her to s-l-o-w-l-y explain what it all meant, which she did.
While my prognosis ultimately was good, chiefly because my cancer was at its earliest stage, the jury was still out on whether or not my cancer had estrogen and progesterone positive or negative receptors on its cells. Thus, we still had to wait for the pathology report before my treatment and the ultimate outcome could be determined. The MD explained that if my cancer was estrogen and progesterone positive, treatment options were available to me, as they would know the origin of my cancer, But if the cells had negative receptors, my treatment options would be more complicated as the origin would be unknown. I immediately understood what she was talking about and I asked her to call my husband to share the news. After that, she arranged an appointment with an hematologist/oncologist for the next day, as well as an MRI/biopsy on my left breast for the following Friday, and I left to go home. Normally a 10 minute walk to Grand Central Station from her office, my walk took more than a half an hour, as I frequently stopped and cried in the corners of each building I passed. I was in a haze, and felt like I was in a surrealistic movie: the sun was out, the air was warm (ironically, it had snowed that morning), people were talking and laughing, but my world was dark cloud. When I finally got home 2 hours later, I collapsed in my husband's arms and wept for hours, furious that cancer had touched our lives.
The next day:
The first words the oncologist said was that I needed to have a total hysterectomy and oophrectomy, or at the very least, an oophrectomy to remove my ovaries, as this was the absolute ONLY way I could prevent a breast cancer recurrence. I could not take Tamoxifen or Arimidex, as these drugs would actually cause a recurrence in me rather than preventing one. They are potent hormone/antihormones that would affect someone that suffered from severe hormonal problems like I had for decades on end, so a hysterectomy and an oophrectomy were my only options. The reason why I needed a hysterectomy: Estrogen dominance, a severe hormonal condition I was diagnosed with a mere 4 months before the cancer diagnosis.
4 months earlier I read that estrogen dominance causes endometriosis (which I suffered from since I was 24 and for which I took potent menopause inducing drugs, as well as endured 7 laparscopic surgeries to remove the endo lesions, to no avail since I was still getting my periods even when I was 52), chronic ovarian cyst production (which started when I was 12 and got my first period, although the types of cysts I had ultimately increased in severity every year) and uterine fibroids - later, a type known as intramural fibroids, which were in the walls of my uterus as opposed to being in my uterus - which arrived on my gynecological scene when I was in my mid -40's. What I failed to see or perhaps acknowledge was the fact that estrogen dominance also causes uterine, ovarian and breast cancer. Now, with the oncologist telling me what was up, I knew that my lifelong gynecological and hormone problems - plus my use of potent fertility drugs to get pregnant (to no avail, mind you) in my 30's - were the root cause of my problems and the cancer diagnosis. I was livid - I had asked my former endometriosis MD for a hysterectomy and oophrectomy when I was 39, but he told me I was too young. When I had gone to a noted fertility specialist in my early 30's, there was NO mention that the use of potent infertility drugs could cause breast or uterine cancer. I was told that they could cause ovarian cancer, so I was hypervigilant about my gynecological check ups in the years that followed. But honestly, had I known any of this, I would never have used the drugs to begin with. Had I been able to get that hysterectomy when I asked, I might not have gotten breast cancer.
That day I told this oncologist that I wanted to get a lumpectomy first and go through whatever treatment I needed (e.g. radiation) before I had the hysterectomy. I wanted the cancer gone from my body. Period.
Friday: I went to a women's radiology center in mid town Manattan to meet with a noted female radiologist to discuss the results of my breast cancer diagnosis and bring her my existing films. She told me that she wanted to make sure that I didn't have cancer in my left breast, so she advised me that she wanted me to have an MRI/biopsy on my left breast, which I scheduled for the following week. She told me that IF I also had cancer in my left breast, I would DEFINITELY require a double mastectomy. My husband and I were stunned...I went from DCIS cancer that would have required a lumpectomy but now, IF I had cancer in my left breast, I would need both breasts removed??? I was horrified and scared out of my mind. That night he and I spent hours looking at before and after photos of women who had double mastectomies and subsequent reconstructive surgery.
The next week I went in for that MRI/biopsy on my left breast and it was a horror show for more than 2 hours. Forget the use of Lidocaine to stave off the pain - 4 shots of the drug DID NOTHING to alleviate the pain, and in fact I truly felt as if I were in a torture chamber. The radiologist was NOT gentle at all, even though she supposedly knew what she was doing. (She charged enormous fees also; she and her facility were considered to be top notch and "female" centered, but I beg to differ. If I had money, I would have sued her.) By the time it was overwith, I was exhausted and then, days later, my breast was so bruised and battered it looked like it was a victim of domestic violence. It took weeks to go away because I also had an enormous hematoma in that breast, which was confirmed by the female breast surgeon I was now seeing. The only positive result of that biopsy was that I did not have cancer in the left breast AND had found a fabulous female surgeon who specialized in breast surgery.