Wish I had never,never done rads, DEEP REGRETS

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

    They definitely want to you to just take their word. So glad I didn't do the recommended chemo.

  • WC3
    WC3 Member Posts: 1,540
    edited September 2018

    I'm avoiding rads if possible but I just thought you all would like a story with ultimately a happy ending.

    My grandmother had mastectomies and rads twice, once for each of her two breast cancers, when she was in her 30s and 40s respectively. One of the mastectomies was botched and she had some problems with that when she was younger, and she either had extensive lymph node involvement when she was dx'd or the rads caused her lymph node problems...I'm not entirely sure but she never showed any signs of lymphedema when I knew her. In fact, by the time I was born, her breast cancer related issues seem to have resolved and she lived in to her mid 70s without any sign of recurrence. She died of unrelated causes.

  • JoE777
    JoE777 Member Posts: 628
    edited September 2018

    Mac I'm interested in your diagnosis and testing results

  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2018

    The person who does the radiation mapping is VERY IMPORTANT! I did my homework on that

    before I settled on a local hospital instead of my large University hospital which was 60 miles away.

  • macb04
    macb04 Member Posts: 1,433
    edited September 2018

    Sorry JoE777, I am too creeped out even discussing that stuff. I am more than just a number/stage. People I know, like my friend Mary were "better" off than me, and did exactly what they were told to do. Mary is gone, and I am still here. People always ask me, am I in remission, or some such crap. I always tell them the truth, they never said. Freaks them out.

    I trusted the bc industry, was brought up to trust them. I wish I had known how dishonest and unreliable the whole stinking mess was. Too much money in it. I am brain damaged to some degree, like pretty much all victims of poisonous chemo. After I had mostly finished, the onco said that I probably didn't need it. WTF??? I hate them all. I will never have back my complete health which the lying, deceitful swine stole from me. There is a special corner of hell for people like that, I am sure.. I don't know how they live with their conscience.

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

    I feel like they purposefully hide what hormone therapy can do. I was totally unprepared for permanent side effects. I will never have my health back either. I guess I consider myself lucky I didn't do chemo or radiation.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2018
  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited October 2018

    I know these are old posts but how are you doing? I also regret radiation. You can read all my prior posts. I have severe acid reflux from it, worry more about side effects of radiation then about cancer recurrences. I did it for my kids but my heart said not to do it.

  • NoteRed
    NoteRed Member Posts: 86
    edited October 2018

    hello to all. For what I 've read and the answers I took from docs radiotherapy must be done (to a new and fully equipped center of course) if you have positive nodes. of course you must check with at least 2 docs.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2018

    Hi Livewelltoday, I am surviving, but find the ongoing side effects from rads and chemo poison damage to be a continuing issue, always to some degree, my chest is too tight still, and I have lung and heart issues that never completely resolve. I have them managed, but I always, always regret letting them destroy my health.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2018

    How are you doing, LiveWellToday?


  • Babymom
    Babymom Member Posts: 4
    edited October 2018

    hi all I am 8 years of cancer free and pray every single day to be free for whole life and I regret chemo everyday by they way life as givessk

  • Babymom
    Babymom Member Posts: 4
    edited October 2018

    hi all I am 8 years of cancer free and pray every single day to be free for whole life and I regret chemo everyday by they way life gived me very beautiful gift my husband and beautiful 4 month daughter I ma so greatfull to my god he has blessed me but I regret chemo but not rads although it had burned me and Scars are shiny and pink in color has enyone had th

  • macb04
    macb04 Member Posts: 1,433
    edited October 2018

    Hi Joanne,

    I am sorry to hear you are in pain. I am glad you seem to be doing well over all. I don't know if I will ever not be angry to some degree. When things go wrong, when I have pain I shouldn't have, I do become angry. I think that is fairly normal. I had extremely substandard, frequently sloppy care st SCCA. I complained and all I got was a form letter saying some BS that they were sorry I wasn't happy with my care. They didn't give a crap what happened to me, it was quite obvious.

    I avoid the whole bc industry now, have nothing to do with them. I see an Oncology trained Naturopath, and just try my best to take care of myself.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2018

    Hi Joanne,

    Sometimes things can be very good, I embrace those beautiful moments when they occur, like noticing my girls growing up and being happy.

    I also save my money for just in cases where I would look outside the box, because I would never trust mainstream care again. Hopefully since I plan ahead, Murphy's Law , I will get to see my girls grown up, my future grandchildren born.

    Blessings on all of you as well.

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

    I have also lost the trust with the medical community. I won't take a prescription without my own investigation luckily my gp understands how I feel.

  • keeshondmom
    keeshondmom Member Posts: 18
    edited October 2018

    wow, I am so sorry to hear this! I am also going to SCCA...I am scheduled for radiation after my lumpectomy, but will now definitely research this more before I consent. My BF tolerated radiation with absolutely no problem, but everyone's different. Thank you for posting

  • Misstic
    Misstic Member Posts: 115
    edited October 2018

    A friend of mine, who is a doctor specialized in AIDS, a life threatening disease like cancer, told me: "You are your best advocate. Check everything they do to you, even a blood test. They do mistakes as everyone does". He was so true! I I saved my life several times during my second cancer journey. My oncologist misread my Petscan (I had a big lump in my colon and he was about to give me an oral chemo). After that first error, he prescribed me a very uncommon regimen I discovered to be discontinued during a clinical trial about women at my stage. My surgeon was about to let me one tumor in my chest wall.

    During every session of rads, I count the number of seconds of every shot they bomb me. I have alternate sessions (because of internal mammary chain rads), so I report every type of session I have.

    Doctors do mistakes. Doctors lie. Doctors cover their ass. Never lower your guard.

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

    About blood tests never being wrong, my 16 year old son was having hip surgery and right before starting the procedure the surgeon came out and said my son had a rare blood disease. I said "I don't think so" his regular doctor that had treated him since birth never mentioned it. The surgeon was hestitate but agree to redo the blood test. Guess what, he didn't have the rare blood condition. I hear this all the time "the labs never have mistakes". I wonder about the oncodx test why are some people getting vastly different results from pathology. Maybe since cancer tumors are usually heterogeneous. I won't bet the bank on one test or even pathology. My biopsy and pathology from mastectomy matched fairly closely, so I feel pretty certain with the diagnosis.

  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2018

    I had radiation too- 33 treatments in all in 2011. I guess I was blessed and lucky because I had zero issues except for slight burning and fatigue halfway through. Thing is I didn't do my homework about the possible side effects. My MO ordered the Oncotype test to see if chemo would be beneficial. I had a micromet in my SN. My score came back@11 so I dodged chemo. I guess I was so relieved I didn't have to do chemo I didn't question radiation. I know the long term effects can be lung scarring and heart issues. Time will tell if that happens to me.

    One thing I did learn from the BC process is to be your own advocate at least in my case pre-radiation. Gone are the days when your doctor's opinion is gospel. I had to question my MO about taking Arimidex because I had osteopenia and it attacks the bones. Seriously shouldn't she have known that? She switched me to Tamoxifen when I called her on it. I have osteoporosis now. Not saying it's due to Arimidex but it didn't help.

    I would have seriously regretted my decision to do radiation if I had had the serious issues you ladies have had. So sorry you were subjected to pain that was preventable.

    Diane

  • sherrmue
    sherrmue Member Posts: 25
    edited October 2018

    I’m so sorry you continue to be miserable. I understand some of your experience.

    I had both breasts removed x2. During the second surgery my surgeon was trying to find clean margins. There were none. He cut away a great deal of skin and tissue, enough that my wounds were difficult to close and so a wonderful plastic surgeon was there to close. She pulled my chest muscles down towards my stomach as much as possible, then sewed the muscle down to abdominal muscle with a mesh. My small amount of remain skin was shaved as thin as possible to remove as much cancer as possible. In the end she still had difficulty closing my chest. All worked out well. They both did an incredible job.

    Clearly there was little tissue between skin and bone. Really, none. I can feel all the ribs on my chest and sometimes I think it will all fall apart. Especially after rads.

    I required full chest rads from my collar bone to lower ribs, as well as axillary irradiation. I had some open wounds in my axilla, however the wounds were not the major problem. I kept feeling sicker and sicker as treatment went on. It felt worse than when on chemo.

    • I began having severe sternal pain and my heart was acting crazy. The sternal pain became so severe, It prevented me from inhaling properly and my oxygen saturation decreased to a dangerous level. I was hospitalized. I was found to also have a burned spot on my heart, which explained the irregular and erratic things my heart was doing. I refused to take the last two treatment and wanted to stop at four treatments before completion, but I felt I should continue despite feeling miserable because my cancer was so widespread.

    Eventually I recovered. My radiologist told me “I’m sorry, I went too deep”. One of her nurses told me “ this is your new normal”. I don’t advocate violence of any kind and have never hit another person nor want to, but in that moment I wanted to punch her in the nose.

    I was really never a candidate for reconstruction except as a possible A cup, because I have very little and tight chest skin even 8 years on. After rads there was no chance. My skin is severely damaged. It remains hyperpigmented and is covered with weird spots and discolorations. I wear a soft bra and even with that I can’t wait to take it off as it feels like it’s made of metal. I must constantly stretch several times a day as my chest wants to contract. The axillary rads produced about the same, I must constantly stretch or lose my ability to lift my arms over my head.

    I advocate for women and men with breast cancer to get the treatment they need, including rads. For all other treatment I drive 100 miles to a well respected cancer institute. For rads I chose to have treatment at my small town cancer center. That was the mistake. I do not believe I would have had the same outcome at the institute.

    Lesson: choose your providers carefully. Receive treatment of any kind at the best cancer treatmentprovider you can get to.

  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2018

    Good advice about selecting your providers. I had radiation at the Baptist Cancer Center which is one of the best in town. The RO and techs were awesome.

    Diane

  • JosieO
    JosieO Member Posts: 314
    edited October 2018

    sherrmue,

    What a story, I was both frightened and saddened as I read your post, knowing how everything was so very hard. I wish that had never happened to you. You are a woman of tremendous courage to endure all of this and still reach out to share and educate others. I wish you nothing but the best going forward

  • macb04
    macb04 Member Posts: 1,433
    edited October 2018

    keeshondmom, watch them at scca. They did a terrible job, really I think they are overall money grubbing and backwards ( why else all the billboards advertising?) . When the Onco Hannah Linden was nasty and mean, I complained and they didn't care. When she got angry and told me " if your cancer comes back, they will cut off your arm!" I complained and they sent me a Form Letter telling me they were "sorry I didn't like her care". scca, none of those c's stand for caring or competent in my opinion. You never forget a betrayal of trust like that.

    Mystic and Meow13, you are so right to be cautious and double check everything.

    Sherrmue, I am sorry to read your story. I was at a "world famous " cancer center, scca. Didn't help. I still got abominally incompetent care. Please look into Pentoxifylline and Vitamin E for help with the Radiation Fibrosis. Even years later it seems to have a benefit. I take it , prescribed by my doctor, and that plus Hyperbaric Oxygen Therapy(HBOT) seemed to reverse the most of the insane tightness in my chest. I got HBOT at a Wound Care Center of my local hospital. Took months, but I couldn't stand the tightness in my chest. I would stretch, and stretch and stretch, got really aggressive PT. Nothing helped till the Pentoxifylline and Vitamin E plus the HBOT. They have to cover Soft Tissue Radionecrosis ( otherwise known as radiation fibrosis). Even Medicaid covers that as a Diagnosis for HBOT. I self referred to the Wound Care Center. I was so bad that they immediately qualified me for HBOT. Then it was a tooth and nail fight with Insurance to cover it. I was extremely persistant, got it covered. Made an enormous difference, now I only have a little tightness, not so severe anymore. No thanks to anyone in the bc industry at scca, they all pretended it wasn't happening and were too much in guilty denial to be of any use. I basically researched my way to some improvement.


  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    I wish I never rads. Mistake.......

  • Artista964
    Artista964 Member Posts: 530
    edited November 2018

    sounds more like the facility was incompetent and not having rads itself.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Thank you for keeping this bumped. I would probably have missed it otherwise. I am meeting my radiation oncologist and medical oncologist for the first time next Friday and I have a lot of questions now that I might not have had before.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Actually, I have more questions. I am trying to do my own research on the mortality impact of radiation and finding it nearly impossible.

    I see studies that compare lumpectomy+radiation to mastectomy, but nothing that compares lumpectomy to lumpectomy+radiation. The closest I found was a study that compared local radiation to whole breast radiation (for early stage cancer). That study found that local radiation had more local recurrence, but did not make any finding about short or long term mortality.

    Are the studies about radiation itself just so old that they're not coming up anymore? No one bothers citing them?

    Anyone who can point me at anything would be much appreciated!

    Thank you!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    I am keeping a document of my research here in case anyone wants to see.

    Where I have pullouts, it's usually applicable to my scenario (stage 1 ER+) but often the articles have info for others too.

    It's still in progress. I set it so anyone with the link can comment/suggest - so please do if you have things to add or thoughts!

    This is my summed up version so far, that I posted elsewhere on the boards:

    As far as long term outcomes like overall survival and distant recurrence/metastasis, radiation does not make a big impact for early stage breast cancer. They had to meta analyze hundreds of studies before they could make a claim that it actually has a statistical significance at all because in each individual study, the benefit was too small to be considered significant. That said, overall they say that there is an 87% chance that radiation will have a positive impact on long term outcomes for early breast cancer, and they think that for every 4-6 local reoccurrences prevented, 1 breast cancer related death is prevented. And radiation has proven very good at preventing local recurrences. On top of the (limited but likely real) long term mortality benefit of radiation, reducing local recurrence can save a while lot of stress, time, and money, for patients. This is all weighed against the short and long term risks of radiation. We still don't have a good grasp of the long term risks because of how long it takes to know and techniques have improved so much in the last 25 years.

    This is all based on my own reading of studies, and I am not a doctor or scientist, just a patient with a way too long wait between diagnosis and meeting my radiation oncologist (Friday will be the day!) and too much impatience not to at least try to look for answers in the mean time.

    From what I can see, studies so far show that whole breast radiation is better at reducing local recurrences and better in terms of cosmetic outcomes. There isn't evidence yet for whether it has lower long term risks. I am leaning towards whole breast radiation.

    On the other hand, I am very keen to ask my doctor about minimal acceptable dose and fractionated treatment to shorten it as much as possible. I also have lots of other questions in terms of how it actually works and lifetime limits on radiation.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    Hmm. I just finished 11 out of 33 treatments this morning. When I had my initial meeting with the RO, I was told 22 treatments but that it could change. It changed, all right, and I was angry about it, but apparently they don't know until the set-up results. The type of radiation is based on things that can't be determined until they know the tissue density, composition (basically fat/flesh ratio), depth of tumor bed vs. depth of breast, node location if involved, and all kinds of other things that only appear through imaging. It's not like a buffet of radiation options where the patient can walk in and pick one, but based on your personal set-up results.

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