Wish I had never,never done rads, DEEP REGRETS

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

    I saw my RO once after it was done, 2 weeks later. Since I'm being followed by my plastic surgeon (still have TEs in but will be out on 12/9) as well as my onc every 3 mo and bc surgeon every 6 mo, they d/c me. If I feel I want to be seen then I can always make an appt. I figure I'm getting enough looks that any of my docs could see if something looks off. So I'm not upset that I was d/c 2 weeks later despite some burning sensations and such that sometimes comes and goes. I know this is normal and may never go away fully.

  • marijen
    marijen Member Posts: 3,731
    edited November 2016

    It sounds like you blew his cover and he doesn't know what he's doing. Have you checked his credentials and reviews? Did you know that complications can arise ten years later from radiation? You are wise to think it over

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

    kb870 glad you got away before the buffoon caused you grievous bodily harm.

  • marijen
    marijen Member Posts: 3,731
    edited December 2016

    Radiation induced breast angiosarcoma - a case report

    http://ecancer.org/journal/10/full/697-radiation-i...

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited December 2016

    I hope and pray these forum posts help educate women, especially the newly diagnosed. I believe breast cancer is often over-treated and when I read of a doctor recommending a double MX and chemo for a Stage 0, it hurts me. Like, physically hurts me. When I read about women who are suffering excruciating pain from side effects from preventive medicine (AI's) and are terrified of stopping the medicine ... (sigh) ... so much pain. These are not small prices to pay.

    My spine was radiated in two places -- it was recommended "for pain relief." I said, "But I'm not hurting in my upper spine. Why radiate there?" I was told that the upper spine tumor was the same size as the one in my lower spine, which was causing pain, so better to prevent the upper spine pain from even happening. I asked if I would still be able to run. Yes. Not, maybe. Not, it varies. But, Yes. The upper spine radiation caused esophagitis for a year (not the two weeks the RO said). Damaged my windpipe and surrounding tissue so badly I can't inhale/exhale properly during exertion. Can not run, nor will I ever be able to.

    I don't care if I'm labeled cranky, difficult, obstinate and non-compliant. I'm also educated, intelligent, skeptical and alive

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2016

    Tarheelmichelle, Sorry you had that horrible experience. I too have found my RO to be , by far, the least forthcoming of all my docs about side effects. They are also the least responsive to dealing with them. In many places, like here, there is zero long term follow from rads to deal with the long term effects. I think as a whole, the radiation oncology profession needs to do a better job of communicating.

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

    The problem is that we all are different in our experience with anything. It's like what do you do. Unless it's pretty obvious that a stage 0 DCIS really doesn't need chemo or rads, for the rest of us it's not so clear cut. There's always the fear of all you need is for 1 cell to escape txs. I see in a few profiles here someone stage 1 with 0 nodes involved a few years later are stage IV. Baffles my mind. They tend to go by lymph node involvement in order to decide chemo and rads. Size of tumour plays a part too but not as much as lymph node. So it's really a tough what to do. I said it before that with my #s I wasn't on the fence what to do. It was clear I needed chemo and rads. But those who it's iffy, how to decide--esp since there are the shitty SEs that may not go away. I still have some doozies.

    I agree that providers need to spill it all. I find that they are on tight schedules with all the pts they see and can't say it all. Mine has 1:1 class for chemo and rads so I was educated well. Wherever I can I post the link to this site for the best source of all kinds of info. Even with the classes, I got so much more from here than anywhere else. This site should come up on the top of google with someone types in bc.

  • marijen
    marijen Member Posts: 3,731
    edited December 2016

    If RO's communicated better, it would mean they have to tell the truth. Mine was very non-forthcoming. Even after I had supposedly unusual sides. I ran into another patient of hers who also had the same side effects. And I was told it rarely happens. Delayed breast cellulitis, lymphedema, and nausea.

  • Pinkwashmenot
    Pinkwashmenot Member Posts: 13
    edited December 2016

    TY for your post. My doc is pulling a new one on me. I have stage 2a invasive lobular breast cancer (no node involvement only 2.3 cm cancer). He first said only chemo now that I am done and he has a new radiology partner now he things I might be better off with radiation. HA! I do not feel good about this and after reading your post I will be very very careful about my decision. Matter of fact it has decided me - I am getting a second opinion.

    Thank you so much.

  • Pinkwashmenot
    Pinkwashmenot Member Posts: 13
    edited December 2016

    TY for your post. My doc is pulling a new one on me. I have stage 2a invasive lobular breast cancer (no node involvement only 2.3 cm cancer). He first said only chemo now that I am done and he has a new radiology partner now he things I might be better off with radiation. HA! I do not feel good about this and after reading your post I will be very very careful about my decision. Matter of fact it has decided me - I am getting a second opinion.

    Thank you so much.

  • marijen
    marijen Member Posts: 3,731
    edited December 2016

    Great, get a second opinion and find out everything you can about the complications of radiation, even years later which includes secondary cancers, heart problems, lung problems. Glad to help

  • Kamsgram
    Kamsgram Member Posts: 3
    edited January 2017

    I can verify the radiation SE's are very specific to the person but people need to know the chance they are taking. Dx'd 2006 with DCIS>2cm L breast directly center behind the nipple. Had lumpectomy, no reconstruction, 38 Rad treatments. Skin stuck to my clothing, to the bandages. It peeled off every time I changed a shirt or a dressing. Tried 2 different hormone therapies but quit after 6 months due to the horrendous sweating and hair growth. Had to have another surgery within 2 yrs, 2+ cm mass L upper quadrant near the armpit. Per path B9 fibrotic tumor due to radiation. Started having severe L chest wall muscle cramps that felt like an acute MI. Same time started having severe asthmatic type symptoms. Got tossed between a pulmonalogist & cardiologist until it was decided I have radiation induced interstitial lung dz. Mammo found a Christmas tree of micro calcifications exactly where the DCIS had been a year after finding out about the ILD. So another 2 cm chunk removed. At this point I requested a mastectomy but the surgeon didn't think it was in my best interest. So now I live with painful scar tissue. So much so, I've given up on mammograms. The last mammo was 13 takes, it was excruciating. They wanted more views-I refused...haven't been back. Now I'm on prednisone, inhalers and nebulizer treatments. Perfumes and aerosols can induce severe coughing attacks. So severe I am unable to breathe until I cough up phlegm choking me. This can happen anywhere and frightens those who witness them. Due to my severe breathing problems I have to work from home and am becoming housebound. My husband does all the shopping. My PMD relates it to having a severe allergic reactions. My suggestion to anyone who starts having radiation "burns" stop the treatment. Try something else. I also ended up with osteoarthritis "possibly" due to the hormone therapy. Had both knees replaced, need hips and shoulder done but I've given up on surgery. I've had pulmonary embolisms that put me in cardiac ICU for 3 days because the only way you pass a L lung embolism is thru the heart. The embolism went thru the septal wall, so I now technically have a PFO. Docs tell me it's an easy fix except my cardiologist just hugs me does echos now and then because my heart was also radiated and the friable heart tissue is probably why the embolism was able to make a hole. And if that isn't enough to deal with, I also have shingles that only break out on the radiated skin. My advise. If you get severe sunburns do your research. Sorry for the Long post. This is probably worst case scenario but these are all part of the risks. I just got the gift that kept on giving now I've given up

    If anyone has any information on how to deal with radiation induced interstitial lung disease I would appreciate it.

  • macb04
    macb04 Member Posts: 1,433
    edited January 2017

    Hi Kamsgram. This is my post, and I started it so people would realize how horrific rad therapy can be. People are going into it blindly most of the time. Or people live with the fiction that these bad things don't happen any more. Well your story is a terrible warning about what disasters still happen to women all the time. I still regret it every single day because my chest feels tight.

    Two things to look into for your Pulmonary Fibrosis are Pentoxifylline and Vitamin and also Stem Cell Therapy

    https://lungdiseasenews.com/2016/09/01/stem-cell-therapy-for-pulmonary-fibrosis-debate-heats-up-as-fda-hearings-near/

    I really hope you find something soon to help you.

  • Lily55
    Lily55 Member Posts: 3,534
    edited January 2017

    I too bitterly regret doing rads, i was not given accurate info and have had constant pain and chest tightness every day since, I have lung problems and heart doctor told me radiation would definitely have affected my heart even though it was on the other side "as the beams are not that accurate"

  • macb04
    macb04 Member Posts: 1,433
    edited January 2017

    I think it is a crime, to not give complete information. They are required to make sure all care is given only after fully informed choice. They DID NOT! have the right to decide for me what was an acceptable side effect of daily suffering. I am not a child, none of us are and we deserved honesty from the lying dogs who Caledonia themselves our caregivers. MD stands for morally deficient in my book, yes I know they are not all like that, but the majority are. They know it too, that's why they have such high levels of suicide, the guilt does them in.

  • abigail48
    abigail48 Member Posts: 1,699
    edited January 2017

    I have all the trauma just not the extra from the conventional no cording or radio necrosis or post surgery pain etc. probably a lot I still don't know. I knew nothing about lymohoma before I came on this site, the other day there was a photo of how bad it can get, but early on a woman posted that she had lymohoma and had done no conventional. three words I thought never to use: nipple, tumor, itch. can you use all three in a sentence? for the latter, very hot shallow bath with various oils, epsom, then some kind of geranium oil after you've dried off, then some kind of soothing lotion. this can work for quite a while

  • JulieG7
    JulieG7 Member Posts: 2
    edited January 2017

    How are you doing now? I was diagnosed with stage 4 BC. 11-2016, I have it in a lot of my bones, and liver. Had 26 rounds of Radiation, am taking Letrozole. I just got finished with Radiation on January 12th of 2017. My question to you is did the Radiation itself make you tired for a long time? I tire so easily. Please let me know. Thank you, Julie in Flagstaff, Arizona.

  • Artista928
    Artista928 Member Posts: 2,753
    edited January 2017

    JulieG7- I'm sure rads contribute to fatigue. I went in right after chemo so I still had a lot of fatigue from it. I think a combo of things as your body is always in fight mode if cancer is present. Best to you.

  • macb04
    macb04 Member Posts: 1,433
    edited January 2017

    Hi Julie,

    I am doing okay. The tightness of my chest bothers me every day. I just try not to think of it, although that is not really possible completely. I still hate the medical morons and what they did to me. That will never change. I don't go in for any BC industry nonsense any more, I have had enough. I do take a natural approach to maintaining my health. I take Vitamin D3 10,000iu per day, I get IV Vitamin C 50 grams per month along with 5 grams by mouth every day at a Naturopath. I take Ashwaganda and Meriva Curcumin by Thorne Research. I also take Vitamin K2 to help keep my bones strong. I think you should especially look into a large daily dose of CoQ10, that one I take is also by Thorne Research. It made a huge difference in my fatigue level after they fried me. I still take it daily because it helps maintain energy, and is anticancer. There are other things I take, I would recommend you see a Naturopath, one specifically trained in oncology like I used to see. She helped me a lot. I never see an onco doc or any of those morally deficient BC industry hacks.

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    My heart goes out to everyone who has experience such debilitating side effects from radiation and I share your concern that risks are downplayed as "rare" without information about frequency. One thing I talked to my MO about is that RO's don't see their patients for ten years as she will if I'm lucky enough to survive that long. I think it skews their perspective that they typically only see the short-term impact of treatment, mostly skin issues.

    My dilemma as I face the radiation decision is how to balance those risks against a 20 year study showing that radiation after lumpectomy reduces my risk of local recurrence from 39℅ to 14℅, especially since my tumor was on the left, I developed cellulitis when my seroma was drained and I already have an encapsulated shoulder and lymphedema, the latter thanks to an ER nurse ignoring me when I told her that arm was at risk and she used it for an IV line anyway. As I understand it, a local recurrence after lumpectomy will automatically result in a mastectomy recommendation with that surgery presenting its own set of risks. I try to be rational in my decision making, but there are so many unknowns with cancer treatment that it often feels like a total crapshoot, especially with triple negative cancer. :-(

    Lyn


  • roche
    roche Member Posts: 61
    edited January 2017

    To group members

    Because I am in a gray area as far as lumpectomy follow up "standard care" treatments, the decision to choose radiation or hormone or both is being left up to me. I am extremely thankful of my diagnosis and prognosis, but this decision being placed on my shoulders is paralyzing. All my concerns and questions about the possible side effects, both present and future that are being brought up on these posts were either denied or minimalized by the RO. I don't know if these doctors are being honest and forthright. I am told if I do nothing, chance of reoccurance is 20-35%. And then there is the mastectomy if there is a reoccurance. I'm on overload reading, researching and fluctuating between going forth or rejecting radiation. My other poisonous choice is a hormone. I have to make a decision within one week if I am to choose radiation and I don't know if I will regret whichever decision I will be forced to make. In my case, a little knowledge is dangerous.

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    I feel your pain, Roche, although I don't have to wrestle with the hormone issue.

    Lyn

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Roche - can you discuss the options with your MO if your RO is discounting your fears? or maybe you have a Gyn who you trust? Good luck.

  • Kamsgram
    Kamsgram Member Posts: 3
    edited January 2017

    My suggestion to anyone thinking about radiation just remember you can stop the treatments at any time. You don't have to finish them. My 1st txmnt I sat next to a woman who was doing her last. For her it was a breeze. Never even got fatigued. No SE. By the time I was on my 6th I was barely able to make it to work. By the 9th my clothes/bandage stuck to my skin. Skin didn't grow back until it was over. It went downhill from there. We all react differently but if you start to have reactions look into your other options. SE of radiation are noncurable and can be worse than the cancer itself. I wish I would have chosen a mastectomy. May good fortune smile upon you all

  • Siciliana
    Siciliana Member Posts: 127
    edited January 2017

    Reading about the side effects of radiation is really starting to freak me out. I found a couple of articles the other night that were interesting. The most recent one was published online on May 18, 2015 by the Journal of Clinical Oncology. The gist is that "some older women treated with hormonal therapy may not need radiation therapy." It says "women older than sixty who have surgery to remove a relatively lower risk type of invasive breast cancer--luminal A breast cancer--and who get hormonal therapy after surgery may be able to skip radiation therapy after surgery." Luminal A is defined as cancer that is ER positive and/or PR positive, HER2 negative, and has low levels of Ki-67.

    Have any of you heard of this? I don't mean to hijack the thread but it seems like a good place to at least ask the question. I have a pre-op appointment with my BS on Wednesday and would like to more about this before I talk to him. (He said the team will be meeting to discuss my case right before my appointment). I'm apprehensive, needless to say.


  • ShareTheLight
    ShareTheLight Member Posts: 14
    edited January 2017

    Roche, I'm going to keep u in my prayers that you're able to come to a decision that's right for YOU. Ultimately, no matter what decision any of us take (whether its our own or by doc recommendation), we are taking a risk and that's scary! Your comment stood out to me because I'm just a step behind you and I pray for the wisdom to do what's right for ME when it's time to decide. Would be interested to hear what u end up deciding. Best wishes to all!

  • gracie22
    gracie22 Member Posts: 229
    edited January 2017

    Siciliana, here is a link from a an article here on BC.org discussing a study indicating that that radiation does not increase overall survival for women over 55 based on a (relatively small) study done in Italy. Prior to that, researchers had indicated that radiation was not statistically helpful in overall survival for those over 70 years old following early stage lumpectomy.

    http://www.breastcancer.org/research-news/20130628-4

  • Artista928
    Artista928 Member Posts: 2,753
    edited January 2017

    Whoa, 35 sounds way too much. Good to get another RO.

  • dtad
    dtad Member Posts: 2,323
    edited January 2017

    macb04....so sorry you are suffering. I also understand that your situation may not be common. However we should all know the risks of treatment so we can make informed decisions. Docs that don't make us aware of the risks are IMO negligent. Good luck and keep us posted.

  • abigail48
    abigail48 Member Posts: 1,699
    edited January 2017

    things I never know before the cyst in my rt breast began to show red. that there was more than one type of bc, that surgery could cause lymphoma (what was that?), that it could cause cording (or is that radiation?, that radiation could cause radionecrosis. and what will I learn next after these going on seven years?

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