Why do we let these treatments ruin our lives?

LiveWellToday
LiveWellToday Member Posts: 35
edited November 2018 in Managing Side Effects of Breast Cancer and Its Treatment

I am fairly new to the cancer world. Diagnosed with Stage IB on April 27, 2018. I moved quickly. Too quickly. I had bilateral cancer. The surgeon wanted to do a mastectomy on one side since there were two tumors BUT she was willing to spare the right side. I opted for the mastectomy. I wish I didn't do that. No one told me how uncomfortable the tissue expanders would be. No one explained the mastectomny is a major surgery. I moved too quickly. I wish I spared my right breast and did a DIEP for the my other side instead of a TE. My plastic surgeon discouraged me because he makes more money on implants (that is what I now realize). I did well in teh surgery but lots of impact on my body.

Then they scared me into radiation though my surgeon and other doctors said it is overtreatment. I was doing so well after the surgery NOW my immunity is gone. My gut bacteria is gone. I can't sleep. I have acid reflux with anything I eat. I am on anti-depressents. My right arm hurts. I have anxiety.

DOn't get me wrong. I believe in Western medicine BUT I also think we are all overtreated. We should not let cancer scare us so much into doing radical things (which is exactly what I did).

When I look around my cancer center I see such defeated women. I used by active, happy, a warm face and I felt bad for those woman. I now fear I am becoming one of those women. The medical system has defeated me. My RO bullied me into doing the radiation. Normally a strong woman, I was not able to fight back. None of my family protected me or stopped me.

· Share on FacebookShare on Twitter

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2018

    Sorry this happened to you. When I was diagnosed I was so freightened I looked to the doctors. I was given 1 week to chose to do chemo. I said no, glad I did. Radiation was unnecessary for me since I did the mastectomy. Radiation was totally down played no negatives about doing it.

    Hormone therapy was down played as well. I think I would do it again if I went back but now I know quite s bit more.

    I was guided to DIEP by a friend who went through the reconstruction options herself. I am happy with my choices. I also had 2 tumors but there was a suspicious area that turned out to be normal.

    Doctors tend to be very strong in arm twisting measures, I found the best sources were contacts and friends that actually had been through it themselves.

    · Share on FacebookShare on Twitter
  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited October 2018

    glad to hear it works out for you. I made the mistake of talking to family and friends who I now realize don’t care about my quality of life but want me to do everything possible to live. Anyone else feel like me

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2018

    My husband wanted me to do chemo but my Mom understood.

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2018

    We are all raised to listen to the dr and do what the dr tells us. Combine that conditioning with a devastating diagnosis of cancer and it is a recipe for getting pushed into treatments without getting all the facts first. Three facts I want to make sure you walk away with from this thread is that 1) you do not have to have an implant replace those expanders, 2) you do not have to stay with those same docs including the PS that put the expander in, and 3) DIEP can be done successfully after expanders, bilaterally, and with great outcomes. It's important to fully vet the PS who will do your DIEP. Don't just go with the 1st one. Their before and after photos of their work tells quite the story. Make sure youd be happy with the story for yourself (and not just happy considering you've had BC, rads, mx and it could be worse.) Here's a link to what DIEP results should look like:

    www.breastcenter.com

    · Share on FacebookShare on Twitter
  • Leidy222588
    Leidy222588 Member Posts: 18
    edited October 2018

    Hi,

    I just wanted to write in support and say that one of the hardest things is that we have to make so many decisions when we are not "ourselves" because we are so freaked out. With time you will feel stronger again and more empowered about later decisions.

    So sorry,

    Tosca

    · Share on FacebookShare on Twitter
  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited October 2018

    thank you for your inspiration. I need all I can get. I am so sad.

    · Share on FacebookShare on Twitter
  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    @LiveWellToday - I felt like you re: family wanting me to do any treatment to “save my life” but not thinking so much about quality of life or side effects from that treatment. My husband was supportive of any decision I made, it was my parents and siblings and in-laws who “laid the pressure on thick” so to speak.

    I tried to be as informed as possible about countering side effects, and ended up insisting on an Oncotype DX test which came out low and gave me (thankfully!) a reason to say no to chemo and not have my family pressure me to do chemo as now I had stats to back it up. I also said no to a bigger axillary node surgery, again I did the research myself and found a study that showed those who had cancer in their lymph nodes but did just the sentinel node biopsy fared on par with or even slightly better than those who did the full axillary node dissection. So while the docs wanted to do a bigger surgery I do feel justified saying no to it, and it’s not an arbitrary decision, there are good stats backing up that decision. I will do the radiation treatment though, my own risk/benefit analysis I think the radiation will benefit me and I’m trying to get through it with minimal to no side effects if I can.

    Where are you at in your journey now? Are you done with treatment? Other stuff still ahead? All I can offer is be your own best advocate, there’s no one size fits all, and even doctors have different opinions. And if you’re done with treatments and feeling side effects, there’s a lot of nutrition and exercise stuff that I’ve heard can help manage, lessen, sometimes even cure the side effects entirely! The good news is we live in a day and age where we can google search everything now and that’s what I’ve been doing.

    Hope to see you find your way back to the healthy, active woman you were before.
    · Share on FacebookShare on Twitter
  • star2017
    star2017 Member Posts: 827
    edited November 2018

    please listen to lula, she’s right. None of the decisions you made regarding reconstruction are binding. Wishing you well as you heal and find your new normal.

    I’m still adjusting and it’s been over a year since diagnosis (tho only ten days since my last surgery). It takes time to start feeling like yourself and not constantly struggling in reaction to diagnosis and treatment.



    · Share on FacebookShare on Twitter
  • dtad
    dtad Member Posts: 2,323
    edited November 2018

    Hi everyone. We all have to remember that it is our bodies and our decisions. Of course we should respect what our docs say but ultimately we have to make the right choices for our own circumstances. I'm in the medical profession so it is probably a little easier for me to not to take what our docs tell us as gospel. However we are all intelligent enough to do our own research before making our final choices for our treatment plan. In general IMO we are mostly over treated and I think the professionals are starting to think that also. We all have to keep in mind that QOL matters too. Too many times MOs are not forth coming about the side effects of treatment, which is just not fair. I believe we have to be well informed. There are many excellent resources available to us. Those in combination with our docs opinions should be considered. Breast cancer is a very complicated disease and different for everyone. I really cannot think of another cancer that has so many factors. So do homework! Good luck to all.

    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    dtad - that’s verbatim what my MO said - women have been over treated for years which is why she ordered the Oncotype test for me. I dodged chemo because of my low score.

    I also agree as a general rule we take our doctors advice/orders as gospel and quite frankly are afraid not to. I know I was. I did radiation and took Arimidex(1year) and then Tamoxifen(4 years). I was fortunate however not to experience any debilitating side effects. It would have been a different story if I had. I’m 7 years out last August.

    QOL is paramount. Who wants to prolong your life - if it comes to that - for months all the while sick and unable to do what you want? I can promise you I wouldn’t and won’t.

    Diane

    · Share on FacebookShare on Twitter
  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited November 2018

    Hi friends, Thank you for responding and continuing this conversation. I am doing much better than I was before. My stomach doesn't burn (2 weeks after radiation, it would burn after I ate anything). I am sleeping better (often without any medication) and I am have more positive moments than negative moments. I am slowing getting back to work, which really has been a life-saver for me. Its the only time I can forget about my symptoms (I still have acid reflux and my throat is so so sore and my arm hurts). I am seeing a GI, ENT, and had a heart test and lung test done. I am still sad that I did such a broad radiation (all lymph nodes and chest wall even after mastectomy). It was really hard to ignore the advice of the radiation oncloists -- I saw the head of rational oncology at 3 major cancer centers who said to radiate though my surgeon and MO said not to. I am worried about long term impacts of radiation but really trying to just be present now for my kids.

    What has helped me is to not do so much Internet research on my symptoms and not do so much blogging. When I do that my mind stays stuck. Its time for me to feel like a survivor and not a cancer patient. I just have my exchange surgery left and I also avoided chemo with low oncotype scores.

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited November 2018

    LWT, I know how difficult it is when we are in the throes of cancer. The fear, the feeling of a need of urgency and immediate action. I hope you can continue to heal and begin a journey of good self-care.

    Just to put it out there for any newcomers, read, research, ask and get second and third opinions. As cancer patients, that is our job. The biggest, most important job we will have in our lifetime. If someone's skill-set isn't medicine or research, find someone who can navigate for you and with you. Talk to other cancer patients who have gone through this and compare experiences. Not all of us will have poor outcomes from "modern medicine," just as not all of us will have great outcomes even if we do all we can.

    Remember you are allowed to fire your doctors if they aren't forthcoming or helpful. Trust your gut. Ask questions and don't allow anyone to dismiss them until you get the response that either comforts your decisions or allows you to move to a different choice.

    I am fortunate that I am a medical librarian and did a lot of reading and research. I met with a radiologist and asked him specific questions. My breast surgeon warned him to be ready to deal with big questions. Both of those doctors were honest and kind. My first oncologist treated me like a helpless, uninformed child. I fired him. My second oncologist allowed me to bring research and even though I felt like I was doing his job, his degree allowed test orders and comments I could not have done alone. I interviewed a plastic surgeon on the advice of my breast surgeon so I could understand (and maybe change my mind) the recon process. My doctors weren't all thrilled with some of the choices I made, but I made it clear it was my body and their job was to help me get to my goals, not theirs.

    Learn, talk, re-learn, discuss, meet with others.....even with all of that, some of us may get nasty side effects or think back and wish we'd done things differently. The goal is to feel empowered and comfortable with the decisions with the current knowledge we have...then we move into the world as our new best-selves and try not to relive our horror-that-is-cancer.

    Best to you all.



    · Share on FacebookShare on Twitter
  • dtad
    dtad Member Posts: 2,323
    edited November 2018

    wallycat...great post!

    · Share on FacebookShare on Twitter
  • GrannyK
    GrannyK Member Posts: 4
    edited November 2018

    What a great topic title! I had a 6mm DCIS tumor in left breast. It was removed on October 2nd and I have been going through radiation. I have a history of heart problems and 2 weeks into the radiation I started having very scary arrhythmia that required an emergency room trip. We have since been trying to get my heart rhythm under control and I have taken 5 days off from rads. On the 4th day off my heart returned to normal and I feel great now. They want me to go back to radiation and I am scared that I will have another episode of heart problems. I had a very small tumor, clean margins, no lymph node problems and a score of 4 on the genome testing. I am 63 and my instinct tells me I'll be ok with the treatment I have had, but the doctors want to do three more weeks of rads. They are making me feel so guilty about choosing to not go back. I have one more day to decide. I love what people said on this post about it's your body your decision. I am feeling bullied into it. I am usually so compliant with what my doctors tell me to do, but this time it feels so wrong.

    · Share on FacebookShare on Twitter
  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited November 2018

    GrannyK, Please don't go back to radiation. First, studies are now showing for older people benefits may outweigh costs of radiation. You only had DCIS which also Weighs against it. And a low oncotype score to boot. Second, I personally went against my own gut to quit radiation after one week and had a breakdown. With months of therapy, acupuncture, yoga, hypnosis, books, church, etc. I a my back to myself. But will never Be the same physically. I should have quit radiation but listened to a few doctors and family and kept doing it. I will never forgive myself and have learned about myself.

    · Share on FacebookShare on Twitter

Categories