mariet's Journey with Breast Cancer

Patient: Breast Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 9 years ago, Female, Age: 58, Stage I, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Decision Point

    Each time I had a mammogram, they had to repeat it, because I had fibrocystic syndrome, so I wasn't surprised when they did that in 12/2008. I met with the breast surgeon and took my sister and mother with me, because I knew I wouldn't take in too much information. The surgeon was really nice, but looking back I don't feel as if I was given choices for care. The tumor was small, and other women I knew had gone through chemo/radiation first to see if it could be reduced, even largely taken care of, but no one offered that. Additionally, whether or not I wanted reconstruction wasn't a choice, either. I was told that with fibrocystic syndrome that I would go through this experience repeatedly; with small tumors showing up. The location made it not viable for a lumpectomy, so the one breast would have to go--no choice at all. The bilateral vs unilateral decision was suggested due to the fibrocystic syndrome. I deferred to the higher experience of the surgeon and agreed to the bilateral mastectomy. I don't have an issue with that, especially because she found more cancer behind the breast. I wasn't given an option on reconstruction--I was told how it would be done, but not if I would want it. However, I was unable to think very well--I was operating on automatic pilot, and probably numb from shock, I guess.

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  2. 2
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Waiting for surgery.....

    Procedure or Surgery

    No one I asked on the medical team--PCP, breast surgeon, oncologist, plastic surgeon--seemed able to answer my questions on what to anticipate. All anyone would say was "each person's experience is different"--which did nothing to help my anxiety pre-surgery. It took over 6 weeks past diagnosis to have the surgery, and that is too long to wait. There was little online as well.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Psychosocial

    Other Care

    I have been so blessed by the psychologist with whom I work; I met her before being diagnosed with breast cancer but while dealing with issues that looked like I had pancreatic cancer instead....she is a two-time breast cancer survivor and gave me so much assistance going through all of the tests and procedures that (thankfully) ended with a diagnosis of acute pancreatitis. I had my gall bladder removed in 1995, but either the surgeon failed to open both ends of the bile duct or it closed because of scar tissue; either way, I had gallstones and underwent 2 ERCPs in 2008, and another one this past January. Pancreatitis causes horrible pain, but it can be treated through diet and medication, and while I know it will continue to come and go, I know the symptoms and don't panic. Largely, that's due to knowledge and being able to discuss what's going on in my life without someone freaking out on me; e.g., family and friends.

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  4. 4
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Double Mastectomy

    Procedure or Surgery

    Like I mentioned before, I had no prep for the surgery--I did research online and asked both surgeons what to expect, but wasn't given too many answers. I was especially concerned about the level of pain that would occur, but kept being told "each person is different". I would have appreciated a comparison point--after all, my breasts were being amputed--isn't that just as bad as losing an arm or leg, or do the "experts" just think that breasts are expendable tissue? I have fibromyalgia, so any surgical pain is amplified and my pain tolerance is extremely low. I knew that anesthesia & surgery create complications for fibromyalgia patients--it's thought that fibro patients still feel every bit of the pain during surgery; what makes that bearable is the medication that creates memory loss--I think the med is versed, or something like that--but the trauma to the body causes fibromyalgia to flare even more. I believe that, after my experiences. The pain post-surgery was horrible; at least I was allowed to stay overnight afterward; the woman in the curtained area next to me had to go home that same day. That's ludicrous! At least, my mom is a nurse, so I had medical care for a week or so after that surgery.

    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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  5. 5
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Surprise--cancer behind the breast

    Oh No

    I am so grateful I had the breast surgeon I did, because due to her experience and the grace of God, when the right breast was removed she saw an area behind it that "caused concern". She sent a tissue sample to pathology and a second type of cancer was found; one that was more aggressive & did not show up on the mammogram at all. The mastectomy was necessary--without it, the 2nd type of cancer would not have been found and would have killed me.

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  6. 6
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Surgery

    Procedure or Surgery

    The 2nd surgery was not as rough as the first, except that the amount of tissue removed from the chest wall has resulted in so many problems--the major one being that there is not enough muscle left to support the right implant, and I've had 2 surgeries (so far) to keep it from sliding. I wish that I knew more about the procedure--I wouldn't even mind seeing the tape of the operation--so I could understand why there is so much more damage on this side.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Problem with doctor

    Oh No

    The plastic surgeon recommended to me was a cold man. He would not provide information about procedures; I was supposed to know instinctively what questions to ask. Nor would he ever talk about possible problems with the surgery; when I asked what to expect he told me "the normal". How was I supposed to know what "the normal" was? I'd never had breast cancer or reconstruction before--he was supposed to be the expert, wasn't he? He didn't even show for the 2nd surgery (to remove the 2nd cancer), with the result that there was more damage than should have been. He was supposed to be there to rebuild the chest wall so that it would support the expander and final implant more securely, as well as clean up the scars from the incisions made. He "forgot" the date, he said; "sorry about that". Due to his not showing for the 2nd surgery, there have been multiple problems with the implant and several extra surgeries. He never returned any calls I would make to ask about any problems, nor did anyone on his staff. I doubt that he could even describe what I look like, because he never looked at anything except for my implants. In fact, I'm a volunteer in the hospital in which I work and have passed many of my doctors in the hallways. All of them say hello, ask how I'm doing, except him--he never makes eye contact with anyone, actually, and its an extremely friendly hospital. The staff especially appreciate the volunteers, and our jackets clearly identify us. I've worked there from more that 2500 hours over the past 4 years. Even with all of the XXX he put me through, the worst was his attempt of performing the nipple reconstruction. Even before the surgery, there were problems. He came in to use his sharpie pen to mark the placement, and didn't even bother to take measurements or have me stand up. I could tell they were not even, and asked him about that, and was told "I'm the surgeon; don't you dare question my judgment." Post surgery, even wrapped in several yards of ace bandages, I saw how bad the results were. The other doctors tried to reassure me and said perhaps they would "adjust" in the next several weeks. I went to the doctors I trusted before I went to the surgery follow up with the plastic surgeon. I wanted confirmation & documentation of the horrible job he did. The nipples were at least 2 inches apart in placement--perhaps if I leaned over to one side or another, I might make them even, but I couldn't do anything about the difference in direction given--one pointed up toward the ceiling and the other down to the floor. At the follow up with him, he downplayed the differences, telling me my results were "above average". At that, I said that he must suck as a surgeon, then. He told me to "get over it; you're just being a hysterical female". At that, I told him to leave the exam room, and fired him; saying he was not going to touch me again. He had the gall to call my PCP & the breast surgeon and tell them I was mentally ill and possibly a danger to myself or others. When they asked him why he felt that way but did not have me admitted to a psych hospital, he said he just felt sorry for me. I received a call later that day from the psychiatrist I was seeing through all of this, telling me that he had to see me immediately. I'd never experienced anything like that, but I went out of curiosity. That's when I found out about the plastic surgeon's calls to the other practitioners, and their ultimate calls to the psychiatrist out of concern. I was referred to another plastic surgeon, who seems good; it took 4 extra surgeries to fix the damage from the first one's ineptitude, and the effects on my fibromyalgia have been horrible. The implant on the one side still is sliding out of place, and both hurt constantly--it feels raw around them, similar to a bad rug burn, but inside the skin. I have asked to have them removed, but it seems that they are not really part of me, as the 2 surgeons have said they "wouldn't want to destroy their fine work".

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  8. 8
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I was initially told I would be "let off easy" on chemo because I had the radical mastectomy; in addition, I was a young breast cancer victim as I was pre-menopausal and less than 50, so there were minimal drugs that I could take. In fact, there was only one for oral chemotherapy--tamoxifen. Oh my goodness, were the side effects horrible! The two worst ones were the headaches--I had a history of migraines, and these were migraines tripled, with nothing to treat them with. The only medication that I'd ever had that treated my old migraines cost over $500 for 9 pills; my insurance would not pay for it, and because it was due to go to generic form in a few years the manufacturer quit giving samples to any physicians, which had been the only way I could get them prior to the cancer diagnosis. The one other side effect that was tough to tolerate was the weight GAIN. Its an urban myth that people lose weight on chemo--some are really, really nauseated and don't want to eat, so may lose weight, but tamoxifen causes you to gain weight. I gained 40 pounds the first month--and I could not handle how emotionally devastating that was to me. In 2005, I had reached the horrible weight of over 250 pounds. By 2008, I lost 130 pounds, with a great deal of hard work on my part. I was able to fit into a size 10 pair of jeans--I wasn't that small in high school! I looked and felt so good; then came cancer and tamoxifen. There was no indication the tamoxifen was helpful, so eventually it was discontinued. A few months later, another medication was approved for pre-menopausal breast cancer patients; instead of migraine headaches this one gave my entire body a migraine. It took me several weeks to realize it was caused by the medication; within an hour after taking the medication I would hurt deep into the bones; even after living with fibromyalgia for 25 years, and learning to live with constant pain, this was so horrible that it made me sick. I even went to the ER a couple of times to get pain shots, even though (at the time) I had access to morphine tablets. Even what they gave me in the ER only pushed the pain back a point--it was 20 on a 10-point scale, and the shots made it a 19.5 (but did help me go to sleep and get away from the pain a little). However, I couldn't afford to keep going to the ER--I live on my own, and you aren't allowed to go drive yourself home from the ER after a shot like that. When that medication had to be discontinued, there was nothing left to use for preventive care; since I had 3 kinds of cancer (skin, 2 different breast), the probability of getting it again is extremely high unless I'm on preventive care. Even so, I would rather take that risk than deal with the side effects that chemo created.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Physical Therapy

    Other Care

    All of the surgeries and loss of muscle caused me to pull forward, so that I began to experience horrible pain from the bad posture. Many breast cancer patients who have surgeries have this problem, and it gets aggravated when one can't exercise post-surgery for a long time due to the drains, incisions, etc. I've developed cervical scoliosis of the spine; have worked with 3 different PT clinics--I'd work with one, then have another surgery, so stop. My insurance denied continued care (its very limited) at the same agency, but would approve it somewhere else. I also gave up for a while; the pain made it too difficult to exercise...I've restarted just now and hope I can get some help with the muscular tightness and hunchback I've developed.

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  10. 10
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Psychosocial

    Other Care

    I also go to two groups that are led by my therapist, and to another one at Gilda's club. The two groups led by my therapist are DBT and Pain Management; the original group at Gilda's Club was called LAT (Life After Treatment) even though I haven't yet stopped dealing with problems from the surgeries and reconstruction. I'm so grateful to Gilda's Club; I don't know what I would have done without all of the support--from their staff and from other patients. I tell anyone I meet who is taking the cancer journey to get in touch with Gilda's Club. There are programs for cancer patients, their families and friends, and some just fun activities that probably provide the greatest therapeutic benefit. While a group sits around doing some sort of craft, our stories and issues are shared, and resources provided, and its nice not to feel so alone.

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  11. 11
    • mariet
    • Experience with Breast Cancer
    almost 6 years ago
    mariet's Avatar

    Physical Therapy--part 3

    Other Care

    I am going through physical therapy right now, and I am finally receiving some pain relief! The PT does myofascial massage, which is the most incredible thing. While it hardly feels as if she is doing anything, I feel my muscles relax and the pain drain out for a short while. If I could, I would have this type of massage done daily.

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