Wish I had never,never done rads, DEEP REGRETS

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  • macb04
    macb04 Member Posts: 1,433
    edited April 2016

    Thanks sas-schatzi. I wanted to comment so that this gets bumped up, so that other women know what to ask and don't blindly trust the md's to be honest, and have their best interests at heart.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited April 2016

    Macb04,

    SO sorry...

    Although my rads tx problem is different from yours in that with mine, there wasn't any initial obvious problem until over a year had passed, the complete lack of honest effort to acknowledge it and try to address the reality of it IS the same. How many of us have serious problems afterward is never dealt with or openly counted for the next patients to know.

    I was not treated at SCCA. My rads was done in a northern California valley rads center.

    My initial diagnosis was done in Alaska. I share your feelings about the difficulty of dealing "appropriately" with any of this as a patient at the "right time". The surgeon "breast cancer specialist" that I saw in Alaska ignored the first BIRADS level 4 recommendation for biopsy. She ignored a second BIRADS level 4 recommendation for biopsy 3 months later. She failed entirely to schedule a third ultrasound/mammogram at all for me, and I scheduled myself for that. It also returned as a BIRADS 4 recommendation for biopsy. NO ONE WAS MINDING THE STORE. I called the surgeon's office, which is affiliated with the hospital, and they said the surgeon was "on vacation in Europe". As soon as she got back I was biopsied, FINALLY. All of that resulted in 6 months of growth of the cancer. A "hospital-based investigation" was done and hushed up. I wrote a letter to the hospital, asking that the hospital board put in place practices to avoid having this happen to anyone else. That never was presented to the board that I could determine. Instead I was given an interview with an administrator only.

    After completing my entire treatments, within the required time-frame, I consulted an attorney and filed. (This of course did not even have anything to do with the completely separate California rads damages.) The system of legal recourse did not work. My original Alaskan "surgeon" eventually left the community. At the time she was authorized by the hospital to treat me, she was on probation in the State of Alaska for dispensing drugs to her significant other, AND she was under review in Arizona for 3 separate cases of questionable practice.

    A.A.

  • dtad
    dtad Member Posts: 2,323
    edited April 2016

    macb04....Agreed!! This is one of my pet peeves. We should always ask and they should always inform us about possible adverse reactions. This is the one way we can make informed decisions. Good luck to all...

  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2016

    Yes. I am so sorry that happened to you. It sure seems like you could get a lawyer...

  • macb04
    macb04 Member Posts: 1,433
    edited April 2016

    Well I spoke to a lawyer about the 5 useless mammograms I had that all said I was fine. I was never told how wildly inaccurate they are. I wish I had done/known about Thermograms. I asked if I could sue for that, asked two lawyers. Was told i was past the 1 year statute of limitations. I haven't even bothered trying to sue for the long term damage, or the lack of full disclosure. It is a racket for sure.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited April 2016

    Macb

    Just want to say hi and tell you you are not alone with the whole collateral-damage-from-rads, mess. My friend is still dealing w residual injury to her lungs from radiation after 3 years and her RO absolutely refuses to acknowledge the relationship between the two. She's gotten second and third opinions from The Mayo Clinic in Minnesota who has confirmed radiation pneumonitis. When given a copy of the dx, the RO pretty much threw the papers back at my friend and said well they're wrong!

    As I said before, what happened to you should never happen to anyone. I do think yours is such an awful case, however if you don't have photos and documentation of the burns, you probably cannot be successful in persuing a malpractice claim. I hope you continue to heal. I also want to thank you for reporting your situation. I believe you are helping others to question radiation or at least be aware of side-effects as terrible as yours.

    Amy

  • abigail48
    abigail48 Member Posts: 1,699
    edited April 2016

    re malpratice. my friend, a painter, cut her hand n some glass, had a dr at the hospital repair it. ha. she can no longer use that hand her right. sued for malpractice, was told no one in this area had ever won a malpractice case and so it was

  • macb04
    macb04 Member Posts: 1,433
    edited April 2016

    Thanks Amy. Yes, I didn't take pictures. I was too horrified. Now my skin has healed, so the damage is under my skin. Still tight, better thanks to Hyperbaric Oxygen Therapy, but just barely got through getting an implant for reconstruction. I wish I could sue for emotional distress and lack of full disclosure of long term side effects. I don't trust any doctors now, feel like they are extremely dishonest and patronizing, as a profession. They would not answer my questions at SCCA, the RO would tilt her head and say I don't know to pretty much every question I asked. I know there are some decent ones, but I don't have much good to say about them.

    http://m.jnci.oxfordjournals.org/content/88/13/918

  • macb04
    macb04 Member Posts: 1,433
    edited May 2016
  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2016

    My trust in doctors is limited, I feel that so many don't really listen. I think as far as cancer goes you really can't rely on doctors advice alone. This BCO and the wonderful people have provided so much information for me. I know much more now than from mo's office.

  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2016

    OMG how horrible for you Macb04. I had 33 Rads treatments but luckily for me I had minor discomfort from burning and a bit of fatigue halfway through the process.

    I was informed side effects like lung scarring could show up years later. I am almost 5 years out. I also had the A team at the Cancer Center where I had my treatments.

    I have heard other horror treatments from women who had Rads treatments. It is criminal that doctors are not upfront with information that is absolutely vital to your treatment plan and recovery. No excuse for that. I'll just bet lawyers don't want to take on the medical profession. They are a brotherhood.

    There was a lady on this forum who died from a misdiagnosis. Had the dr DX her condition correctly from the getgo she would be alive today. She went from a manageable UTI to Stage IV bladder cancer. She consulted an attorney who pretty much brushed her off mainly because she was an older woman. Reprehensible.

    Doctors are not infallible and we have to be our own advocates. It's our bodies and our lives. If your dr is dismissive of your concerns then it's time to find another one.

    Diane

  • macb04
    macb04 Member Posts: 1,433
    edited May 2016

    I think you are right again Diane, they should behave ethically and competently and I doubt either of those values was on evidence by the doctors at SCCA that I dealt with. I am still tight in my arm, shoulder and chest, and I think I have a rotator cuff tear because of trying to stretch out my perpetually uncomfortable. shoulder. I do wish I could sue, I am broke and in debt, trying to fix what they wrecked. I will be starting a new job in June, but I will have to try and make deals with hospitals where I had HBOT and procedures/surgeries to pay in installments as I don't have the money now. I was layed off in January and get a bit each week from unemployment. Otherwise they send you to collections, which I think is wreaking my credit. Uuuuggggg.

  • macb04
    macb04 Member Posts: 1,433
    edited May 2016

    I hope to keep this post front and center to the Rads forum. I feel that a worst case scenario like mine needs to be known to other women, so they have a truly realistic expectation of what might happen, not the Pollyanna whitewash that is usually given by doctors.

  • Artista928
    Artista928 Member Posts: 2,753
    edited May 2016

    It seems to me that it was more the place/people that dealt with your case than rads itself. While of course there are some who have issues, most seem to not have big issues. Everyone should of course do their research and decide on their own, and that goes for chemo too where there are cases of "hell" as well. Seems imo you should putting the word out more about the team in Seattle that screwed up than about how terrible rads is-- imo.

  • dtad
    dtad Member Posts: 2,323
    edited May 2016

    Artista928.....Dont really understand why you would have a problem with macb04 sharing her horrible experience with radiation. She has the right to be angry and if she can't be understood here then where? We are here to support each other. Of course most don't have these issues but she certainly is NOT the only one. This should be a safe place to vent. Good luck to all...

  • Artista928
    Artista928 Member Posts: 2,753
    edited May 2016

    I certainly don't have a problem sharing bad experience, but from what I'm reading it's the center that screwed it up or the docs making the decision. Sure there are side effects to it but what she had isn't common. Just don't want to scare folks away if it is in their best interest as this is sure not the norm as rads go.

  • macb04
    macb04 Member Posts: 1,433
    edited May 2016

    Thank you dtad, for your support. I feel as you do, that this is supposed to be a safe place to vent, and that I am not alone in my experience of horrible side effects. Would that this was true. Just here in the Radiation section of this board there is a post about Long Term Radiation Effects, and I doubt all of those women had the misfortune to be seen at SCCA, like me. I would say incompetence lives in many places.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2016

    There is no other avenue to provide real-life outcomes for others to take into consideration at time of treatment recommendations. There is no nice agency out there that keeps track for us all, that would result in providing an accurate picture that caregivers would provide to us at the same time they are presenting their recommendations.

    This is particularly gruesome and tragic because these are recommendations that are being made to populations that include those who have been classified as "early stage", with a particularly large number of humans who likely get no benefit at all from the treatments.

    At 14 years out from early stage bc with stage 1 lumpectomy and SNB, I am dealing with being a freak with two entirely different-sized breasts, with one perky and one sagging. I had near-perfect breasts at time of diagnosis and treatment. I have not had recurrence.

    However, as a direct result of treatment for early stage bc I have been genderless ever since completion of treatment. As a direct result of rads, I have radiation necrosis and the breast has hardened to the point that mammograms have become intolerably painful. When I told this to my BS' nurse on the phone, she actually laughed and told me to "just take a pain pill before the mammogram". I took her advice, which proved to be absolutely useless and insensitive. To make matters worse, the only way that the mammographer deals with this situation is to tighten down the paddle onto the painful breast even more because the hardened breast tissue will not compress adequately for getting a clear enough image for the radiologist to see well. I do my best to handle that. The reward I get for doing that is to then be told they need additional views. Their answer to the problem is to then tighten the pressure even further. They have become part of the machine, and the machine is all they know. I am no longer a person to them.

    I had my most recent mammogram in 2014 and skipped last year but did a breast MRI. My BS continues to insist that I alternate a mammogram 6 months after annual MRI.

    I have been scheduled for a mammogram in early July. They offer no alternative. I am not the one who burned the breast so badly with excess radiation. The net of all of this is to be treated as if I am not cooperative. This stinks.

    A.A.

  • muh
    muh Member Posts: 15
    edited June 2016

    Hi macb04 and everyone else. I appreciate you (all) sharing your experience. I just joined the forum a few days ago, adding my story that I really had wanted a mastectomy but I was first told the hospital didn't do it for my cancer and later that my insurance wouldn't cover it (I'm in Europe). My gynecologist later said it can definitely be covered if they just write a justification (if only I had asked her first), but the concern now is that I have already had 2 weeks (of 6) of radiation. If I were to stop now, I don't know how long I would have to wait for the surgery and because the tumor was close to the chest wall (though small) if radiation would have been recommended anyway. I don't know. I had clean margins.

    My cancer was on the left. I'm concerned about long-term radiation effects to the heart and lung, some of which won't even begin to be a risk for 10 more years, but will then increase (I'm 49). Though I'm doing the breath hold, the beam does go through my lung since the cancer was near the chest wall. To top it off, I'm now worried that I have a bit of a fever and a cough for 5 weeks. What started as such a good prognosis is more and more scary. I feel like early morning is the best. Sometimes I still wake up and think that I just had a bad dream about having cancer. A second later, it's all there again. I think it's important to share. I appreciate your real life experience. I have been pretty isolated and most of the information I have received has been from reading studies on the internet, which can be terrifying. Thank You!

  • JustJean
    JustJean Member Posts: 327
    edited June 2016

    A.A. - You may have to pay for it if insurance doesn't cover it but please check into thermography. Much kinder to someone like those of us with radiation damage. And nowhere near as expensive as a mammo.


    Good luck to you.


    JJ

  • macb04
    macb04 Member Posts: 1,433
    edited June 2016

    Wow, Alaska Angel , it sound like they are insensitive jackasses. I don't ever get mammograms anymore. I HAVE HAD ENOUGH. Those mammograms, 5 of them, completely missed bc, I had dense breasts. It is well known that the fibrotic changes that occur secondary to radiation fibrosis increase the density of breast tissue, making mammograms AND MRI's highly inaccurate. It is also well known that mammograms can increase chances of breast cancer because all radiation exposure is cumulative in toxicity. So here is an exerpt from an article discussing this very thing. I doubt that your onco doc discussed the ambiguity of doing these screening tests with you, which can be highly inaccurate, and are extremely painful for you. Have you thought about skipping the mammograms and MRI's, and doing Thermograms like was mentioned above? Your onco Doc will say they are inaccurate, well this study,and scores of studies just like it, show that so are the mammograms. The choice is YOURS, not theirs. They don't have to live with the side effects or complications of "accepted treatments "

    However, after breast-conserving therapy, posttherapeutic changes may interfere with an accurate interpretation of clinical examination findings, as well as of conventional imaging studies. Interpretation of posttherapeutic mammograms may be impaired due to a diffusely increased density of the breast parenchyma (edema in the early period and fibrosis in the later period after radiation therapy). As many as 19%–45% of all recurrences are invisible or misinterpreted on mammograms obtained after radiation therapy (5,2025). On the other hand, architectural distortion owing to scarring, dystrophic calcifications, and stellate or masslike lesions may mimic tumor recurrence and may cause diagnostic difficulties and unnecessary biopsies.

    http://pubs.rsna.org/doi/full/10.1148/radiol.2293020167

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    I had very little difficulty post-rads (16 partial-breast treatments) except for enlargement of the tumor-bed seroma and fibrosis over it--which have both pretty much resolved. BUT I am a bit shaken that three weeks ago, at a baseline skin-mapping exam my derm noticed a 2 mm “atypical mole” on my back that looked very suspicious for melanoma--irregular border, asymmetrical, tan-and-brown. Took two biopsies (shave and deep-punch with sutures) to get clean margins and determine it was a pre-cancerous dysplastic nevus in situ. My PCP had looked at my back a few weeks post-rads to evaluate a large sebaceous cyst (aka the Headless Zit From Hell) elsewhere on my back and never mentioned a mole (and he notices everything). I mentioned to my derm that I’d never encountered a mole there before, and asked if it was possible that it could be a side effect of rads--the trajectory of the double-strength beams to my tumor bed would have exited my body at that precise spot had I not been lying on a hard table. She said it was theoretically possible, but there’s no research yet to support or disprove it. I don’t think it was something my RO had previously encountered, either. All in all, though, the mole was safely and completely removed, and (hopefully) any remaining tumor cells in my breast were killed. Skipping rads would have been more dangerous, IMHO.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2016

    Sandy, I noticed a mole on my rads side awhile back and now I wonder, though I can't say it popped up during rads. I'm down 21 with 7 to go. I'll have it looked at. Thanks for the post. Never clicked to have it checked on as I'm just focusing on the areas being radiated.

  • macb04
    macb04 Member Posts: 1,433
    edited June 2016

    Sorry to hear of your having that precancerous mole on your back ChiSandy. Glad they seemed to get it all. Yeah Arista 928, keep an eye on any new spots that pop up.

    Hey muh, I get it. Sometimes for a moment I forget the disaster that has befallen all of us. I would like to tell you it willget a bit better with time. It does and it doesn't. I am still fine tuning my reconstruction, when that is done I hope I have more moments with no thought of bc. 4 years out still waiting for that.

    http://www.ncbi.nlm.nih.gov/pubmed/23932152/

    http://www.ncbi.nlm.nih.gov/books/NBK13999/

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3546788/

  • Suz-Q
    Suz-Q Member Posts: 205
    edited June 2016

    My MO gave me a script for Pentoxifilne. It's really helping in just twe weeks time! My muscle in the radiation field area is much, much better and my skin and breast tissue is feeling less tight also. Glad something is working. I'm getting fat grafting in early August in hopes that it will help heal the radiation damage

  • macb04
    macb04 Member Posts: 1,433
    edited June 2016

    Hi Suz-Q, so glad to hear that the Pentoxifylline is helping you. Are you pairing it with Vitamin E like in all the studies? I take both, and cross my fingers that my breast implant and surrounding skin stay soft. Have you thought about Hyperbaric Oxygen Therapy (HBOT )?? That is a known treatment for radiation fibrosis damage. I did HBOT and benefited hugely, although I did a large number of sessions. Even smaller numbers of sessions are proven to help heal skin damage.

  • Suz-Q
    Suz-Q Member Posts: 205
    edited June 2016

    I would probably love to do HBOT, however there are no centers close to where I live, I'm guessing I might have to pay out of pocket, and the time to commit would be a problem as well since I work full time. So far I'm very pleased with how well I'm doing on the Pentoxifilne and vitamin E regimen. Muscle damage is nearly gone! My skin was not an issue for me even though it feels a bit thicker, it's the inside of my breast that's really firm. I'm having fat transfer in early August to help with everything too

  • macb04
    macb04 Member Posts: 1,433
    edited June 2016

    Hi Suz-Q, sorry I repeated about HBOT, then checked later and saw a few months back we had talked about it, that you couldn't do it cause of work. Very glad Pentoxifylline and Vitamin E are helping you so much. I am also taking it aling with a Prescription Compounded Pentoxifylline and Vitamin E topical cream. I use both Oral meds and Topical Cream every day. That helped my skin tightness so much. Also really glad about your upcoming fat grafting. Is it part of any reconstruction, or hust for alleviation of your muscular tightness? Sorry if you already answered that.

  • Suz-Q
    Suz-Q Member Posts: 205
    edited June 2016

    The fat grafting will be for both, restoration and healing. Fat has a lot of stem cells in it. It should help soften the breast and help with the muscle tightness. The fat will fill the lumpectomy divot and lift the incision scars.

  • Busgirl406
    Busgirl406 Member Posts: 12
    edited June 2016

    WOW..so I just started yesterday and I asked my Dr about all these so called extreme reactions He actually wanted to make a monetary bet that none of these BAD things will happen. From the first simulation to the pre exray/,first day did not go well. Simulation took an hour and a half. Then after 8 days the supposed day of my first radiation was a horrible experience. I laid on that cold morgue table in a frigid room for 1.5 hr's. I am by nature not a patient person, so I was complaing about the cold, but almost stood up and walked out. After the 1.5 hrs they finally sat me up and said we can not line you up. We will consult the Dr and call you tomorrow.

    Yesterday it was about 45 mind. I was dressed in clothes meant for cold weather including a sweatshirt cut down the middle that my mom made for me. It was a lot warmer. I felt nothing and they said your done. After arriving home I began to feel the FATIGUE. I had asked a lot about this Fatigue because I board dogs in my home and can not nap. At 5 pm I was so tired I had to lay down and by 7:30 I was a sleep and slept until 7 am. I am getting very concerned.

    I am very afraid of lymphedema and my thyroid.

    Am I doing this because the Dr says so.

    I need advice

    Please respond to me at my email address with any advice.

    busgirl406@sbcglobal.net.


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