• Anticipatory Anxiety/ alternative treatments/ the book "Radical Remission"

    Asked by AliciaCorinne on Tuesday, March 1, 2016

    Anticipatory Anxiety/ alternative treatments/ the book "Radical Remission"

    I really am my happiest when I don't think of cancer at all. I have anticipatory anxiety around treatments ( and no I don't want drugs). I know this sounds crazy but I am jealous when I see people diagnosed with stage 1 or 2. There is an end to their treatment. I was diagnosed with stage 4 triple negative breast cancer at age 47. My doctor says there is no end to treatment until I choose not to have it anymore. I am not a candidate for surgery. I am tired of having no hair, and no energy and this port. I've only been in treatment 1 year and was wondering what other people's experiences who fall into the category - no end to treatment until the end -have been so far. Has anyone stopped traditional treatment, augmented with alternatives or used only alternative treatments. Has anyone read the book "Radical Remission"? I hope I'm not sounding ungrateful but sometimes I want to scream when people say "you should just try to enjoy every moment as my moods run the gamut. Thoughts...

    18 Answers from the Community

    18 answers
    • TXHills' Avatar
      TXHills

      I had Stage 2 cancer five years ago and am now Stage IV, with at least 20 mets to my liver, as of August of last year. It is disheartening to be in treatment and feel unwell and "different" all the time. Your feelings are true for you, and not wrong. It does help me to realize I am not only my body or my cancer. The cancer is a process happening in my body.
      Radical Remission did not impress me much. Testimonials are not valid, scientifically. The biology of each person's cancer is different and mutating all the time. What works for one person does not translate to others.
      I do think our body is (possibly) in healing mode when we are relaxed, so I do Mindfulness Meditation and it really has helped my anxiety. I'm all for fewer pills and tools that give me the power to help myself feel better, anywhere, any time.
      Jon Kabat-Zinn has several guided meditations on YouTube, if you are interested. I also try to be grateful for the good in my life and the parts of my body which are still working. I can still eat and drink and walk and enjoy the coming spring. Gratitude and music can change my mood the quickest, when I'm feeling in pain or upset. You can notice what takes you to your happy place, and choose more of it.
      Chemo is pretty much my only option, too. If ithe cancer progresses after three types, I will likely stop active treatment. Nearly 50% of people who die from advanced cancer have chemo within 2 weeks of their death, but I don't choose that for myself. I contacted the local hospice, updated my will, completed an Advance Directive and am feeling at peace, most of the time, with whatever happens. I wish the same peace for you.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I will be in treatment for the rest of my life. I am fortunate because my current treatment (since 7/2013) doesn't make me sick and I have very few side effects. Due to those facts, I am able to live my life very much like I did prior to my diagnosis with stage IV lung cancer. I go for treatments every 2 weeks, scans every 3 months, and continue life otherwise.

      If I was super sick throughout, I probably would have a completely different stance. I was getting depressed when I was on traditional chemo, knowing I was making myself so sick every 3 weeks by submitting to the chemo.

      almost 4 years ago
    • lujos' Avatar
      lujos

      TXHills, your approach sounds like what I'd choose

      almost 4 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I surely do know how you feel. Even though I don't h ave stage IV and hope that never happens, I do know what it is to be jealous of other caner patients who had an easier time of it. I go to church with a lady whonever needed chemo and took herself off Tamoxifen, and is doing great ... over 5 years out with no recurrance. I, on the other hand, had chemo, still have to take Tamoxifen until 2019, and still get nervous when the oncologist wants additional blood tests like I reported last week. While I was on chemo, I hated the idea of delilberately making myslef sick every 3 weeks; I wanted to be my healthy energetic self again so badly I could taste it. It seemed that summer, just about every commercial on TV was something to do with hair; then when mine started growing back, the commercials changed. What I am trying to say here is your feelings are normal, and we can't all be little positive princessess 24/7. We have our good days and our bad days, and none of us wanted a membership in this terrible club. Just know our feelings are normal, and if you need to, please talk to a pastor or therapist or both about how you are feeling. HUGS and God bless.

      almost 4 years ago
    • savingrace's Avatar
      savingrace

      Even though I'm not on any treatments or meds now but when I was taking chemo and back and forth to the doctor's office for blood work, etc. I felt HOW MUCH LONGER. So for one to be diagnosed at a stage that the treatments don't look like they will end can have a very powerful impact. Everyone is different with feelings and handling situations but turning to positive people, things and activities can be a good start to having a better outlook. Even though the condition is what it is, being involved in uplifting things can make a difference in how you feel. I'm reading a book now entitled The Power of I Am. It talks about how being more positive with the words we say can turn things around for us. Not saying that it will take away the diagnoses but when we speak life, our life can be more uplifted. When I was going through treatments, I did alternative medicine along with the conventional things ordered by my oncologist and it did wonders for me. If you can find that along with a support group that may be a start. Remember to keep looking up and not at the situation at hand. True like I said, it is what it is but learn to control it and not it control you. I pray the best for you.

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      Talk to your Dr. about "integrative" treatment. This is treatment that addresses the whole person. It involves diet, spiritual guidance and supplemental treatments (meditation acupuncture etc.) Some places even have comfort dogs. Our Chemo suite had visits from a comfort dog. You might want to discuss this with your PCP.
      On my last visit to my oncologist. There was a Lady in the office who was as bald as a newborn baby and she was happy and smiling like a baby also. After talking with her I found out that she was a four year survivor of stage !V cancer (I don't remember what variety) She was in her late 50's and had young grandchildren that she talked about all the things they did together.
      Remember the decision is totally up to you. But do think it over carefully.

      almost 4 years ago
    • gpgirl70's Avatar
      gpgirl70

      I am stage IIIc and my mom has been stage IV for 10 years now. When she went to the radiologist after the stage IV diagnosis, he said "I don't know why we're doing this you are going to die." She switched radiologists and never looked back. She has never had chemo as her original staging was stage I 23 years ago. I have had chemo and radiation and we recently discussed whether she would go through chemo if her disease progressed. She recently tried Ibrance but her neutrophil count went too low. She has has other infusion therapy but nothing that has decreased her quality of life. We went to Europe to see family 3 years ago and were gone for two months. I had trouble keeping up with her in Paris.

      I am trying to be proactive, seeing a naturopath taking lots of supplements (beta glucan, green tea, vitamin D3, heart plus, B12, selenium, barley power), eating a mainly plant-based diet (meat rarely), very limited alcohol (maybe one glass of red wine every few weeks), and I do take Anastrozole. I walk at least 3 miles a day 5+ days a week and go to "old lady" yoga 3x a week. In addition, I practice mindfulness. I also recommend Jon Kabat Zinn.

      almost 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      AliciaCorinne, I am Stage IV and will take a daily chemo pill until I die. I have some bad days with side effects, but prefer that to the alternative (death). I'm thankful for my good days and have good times then.

      With all due respect, I believe your problem is depression and/or anxiety, which are very common in cancer patients, and you need to talk to your doctor about medicine and a professional counselor specializing in cancer patients. If your oncologist is not receptive, talk to your PCP or find another oncologist---your mental health is just as important as your physical health, especially if you are considering life-changing decisions.

      Studies show that a combination of counseling and medicine work faster than either one by itself. Call your doctor without delay!

      almost 4 years ago
    • geekling's Avatar
      geekling

      An acquaintance of mine, Rita H, no longer has breast cancer. Apologies but I do not know the typw or stage but any cancer is heaet stopping. She decided to pay her luck & determination forward with the Personal Development Community Organization, Inc. I dont know what she can do for you in that She is in Palm Beach, FL but you can check her website www.thelivingcourse.org to see if you have interest. She is one of those non existent untracked breast cancer survivors who stepped away from the system and disappeared alive & well.

      Best wishes

      almost 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Since you said yourself that your moods run the gamut, please don't make decisions about stopping your traditional treatment until you get your moods treated. Best wishes!

      almost 4 years ago
    • barbdee's Avatar
      barbdee

      I hear what you are saying.....we've all been there at some point. There are no extra points for going medicine free. Why suffer needlessly? Your disease is enough. It is rare to not be down, depressed, have insomnia, anger, or anxiety! Speak with your team, someone you have a good Dr./patient relationship with, tell them & get the prescriptions filled. I have scan type anxiety. A half of the lowest dose Xanax knocks it to the curb! Live your life & care less what others think about medicines you may take. This is about you! Hugs

      almost 4 years ago
    • AliciaCorinne's Avatar
      AliciaCorinne

      So thanks for all the responses. I want to live my life and be positive but I'm realistic too. Should I take a new job now, should I work more because I want to save door the things I want in the future? Should I make long- term goals? Should I divorce my husband and move knowing it would be a huge financial strain and difficult on my boys Or should I throw in the towel, stick with a husband that no longer wants to be with me and has told me so - but stays for whatever reasons, the kids, guilt, convenience - I don't know - the fear of getting sicker and short prognosis rules my life - I want to be optimistic but I want to be rational - I ahould be anxious, depressed - it's normal with my stressors- I don't want more drugs with more side effects - I want positive stories, hope, people telling me they can work with stage 4 and have been doing it for years - I'want a miracle I guess - like Geekling says or the lady whose mom is doing great going on 10 years or live with cancer whose side effects seem minimal - I want to live my life as if I don't have cancer

      almost 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      AliciaCorinne, I understand what you are saying and feel even stronger that you would be helped by going to a counselor to discuss and learn how to handle your situation.

      I've been Stage IV for 3 years, take an antidepressant, and have no side effects. Hormone therapy given to breast cancer patients depletes the chemicals in your brain that control sleep, pain, and depression. It's a chemical problem---not just your emotions. When someone is chemically depressed, difficulty making decisions and feeling hopeless are symptoms. (Your depression is a side effect of the hormone therapy.)

      Please at least ask your doctor's opinion about all the above, and remember if you want to feel better, you need to try something different---you can always stop if you don't like it. Many cancer patients take antidepressants, and you would be surprised at how much better you can feel. Best wishes to you. Please update and let us know how you are.

      Call your Primary Care doctor today and ask his or her opinion. You CAN feel better.

      almost 4 years ago
    • AliciaCorinne's Avatar
      AliciaCorinne

      Barbarhain Bam - I don't take hormones. I see a counselor and I don't think I am clinically depressed. I'm just struggling. I do think I must leave my husband and this will be rough. I can't expect to be happy through through this and don't want to really spend my precious time mourning the loss of 20 years together but living with someone who is dismissive and resentful who says he is "trapped" is not my idea of a good time either. It's just so hard to let go. I thought he might actually show me some love under the circumstances. Ivan sad. I am angrt. I stilll love him and this hurts. I feel like I will not have the chance to find love again. I t is making me unhappy and it is unhealthy for the children because I either need to accept the situation for what it is or move on. I am so scares to move on. It is not depression but fear that makes me indecisive. I am afraid of getting sicker and not being able to take card of the boys or having this be to emotionally draining on them to live alone with me or financially not being able to so for them. It is fear that keeps me indecisive -

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer (Best Answer!)

      AliciaCorinne, you might feel so empowered and frr after leaving that SOB that you won't mourn nearly as much as you think. I think you are enduring horrible mental abuse from him. Your kids are probably well aware of the bad situation and will support your decision to go. They will be a great emotional support as you build a new and happier life.

      I am going to be praying for you. You are in a situation I would hate to be in, but I think you can do this and that you will be much happier for it. Find some new groups to join and make a new life away from that cruel man.

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      Alicia you mentioned that you see a counselor, is this a marriage counselor? Has your husband refused to see a counselor? Even if the marriage is definitely going to end you both need to see a marriage counselor together. As for yourself, you have admitted what needs to be done. You are gathering strength to do it. You do not need to burden yourself with the need to maintain a positive attitude.
      Many prayers for you.

      almost 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Alicia, I was referring to ANTI-hormone drugs (or removal of ovaries, etc.) that breast cancer patients take to deplete estrogen---they deplete chemicals in your brain effecting depression, difficulties with sleep, and pain perception. (I would encourage you to confirm that with your doctor.)

      I understand your marital situation is stressful on its own. Many years ago before my breast cancer, I went through a very difficult divorce and had similar fears about leaving and raising my 6-year-old daughter alone. Although I had counseling and took an antidepressant for only about a year, I was helped through the roughest part of my decisions and separation. It helped me function at work, etc.

      I wish you the best and hope you will at least ask your Primary Care doctor for his or her opinion, since a PCP is concerned with your total health.

      almost 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      P.S. As LivewithCancer said, you and your boys are enduring a lot of stress with your husband, and you (and they) deserve better than a verbally abusive husband. Look ahead to what you would do for pleasure if he was gone. . . . I've had lots of fun since my 15 yrs with my ex---no regrets!

      almost 4 years ago

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