Wish I had never,never done rads, DEEP REGRETS

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  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    Ok, thanks on the age KB - I couldn't remember. I like your hubby!

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2017

    I had the 16-treatment protocol, but my tumor (and therefore the tumor cavity they were radiating) was smaller than yours, runor. It was on the R side, off to the side. My surgery was uneventful and didn’t need reexcision for margins. I was originally scheduled for 4-6 weeks post-op (and had my mapping), but then my SNB incision dehisced and the underlying seroma burst and had to be sutured closed. I didn’t get the go-ahead to start until the stitches were out and the incision healed. And as to AI, my MO is a firm believer in one stressor at a time when possible—thus I didn’t begin letrozole until the redness & swelling had begun to subside.

    Sorry your experience has been much worse.

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

    Hey runor, where there is smoke, there is fire. Or here is another good one "The Lady doth protests Too Much, me thinks" Or as KB870's husband, the man who is a Nuclear Safety Specialist said, "Well WTF else is it, IDIOTS"

    You could stop 100 average people on the street, tell them the chronology of events, and they wouldn't believe the radiation doctors. They obviously have a vested interest in keeping patients poorly informed. I used to ask my RO questions, like, does radiation increase the risk of Lymphedema. She would say I don't know. How the heck could she not know? If they don't keep stats, then it is a form of willful ignorance,of plausible deniability. They even cooked the books. Didn't even write down that I was getting open sores by week 3. Made me go see the RO, now no record, she can just deny the whole thing. Just wrote down that I was "EMOTIONAL" Any of you women Not emotional a time or two? That is a big flaming put down of what awful things were done to me, all in the name of keeping the RO blameless and protected from any possibilities of a lawsuit.
  • macb04
    macb04 Member Posts: 1,433
    edited July 2017
  • macb04
    macb04 Member Posts: 1,433
    edited July 2017

    I wish they all got it. I had so very many who were annoyed, that I wasn't happy with their sh*tty excuse for" treatment" I have not been grateful for one mutilating, burned to a crisp agonizing moment, and I never will be. I think many of them are going to have whopping bad karma.

  • runor
    runor Member Posts: 1,798
    edited July 2017

    I feel like I'm being a big baby.

    KB, I will ask those questions. What do I do with the answers?

    I am positive I have the signs of impending lymphedema. My left arm feels odd. Tight. A little thick at the elbow. Can't tell by looking, barely. Only from some angles. I point this out to everyone I can. No one seems to give much of a shit. Rad onc nods and says there is a 10% chance ... but she does NOT say, go to the pharmacy and get a compression thingy. Nor is she going to dial back the nukes. It's like she's determined to bake this potato!

    Thank you all for being wise and experienced ears.

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2017

    I am one of those people who had Rads with no real side effects and still posts here. I have made friends on one of the links and we talk about lots of other things other than our ailments. Several of us have even met each other up close and personal.

    I was blessed to have a great team of techs and doctors. I had 33 Rads treatments. Redness and fatigue from the Rads but that's pretty much it.

    We deserve the best doctors and I wouldn't settle for less. Clearly you need answers. We pay them for their expertise and they better deliver.

    I would get a second opinion. Your medical team is way too complacent and indifferent. Not acceptable.

    Good luck.

    Dian

  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2017

    Hey runor...do you have a (kinder perhaps) doctor on your team who might refer you to a lymphedema specialist to get checked out? You don't have to be officially diagnosed with it to see someone. They can assess and do some measurements and compare both sides. I get measured every three months as part of an ongoing prevention program (can't really prevent it I guess but at least catch it early if it starts), but don't have lymphedema. Then they can recommend what type of compression to use if they think you need it.

    They really make it sound like radiation doesn't cause any problems, and it's just not true. I don't understand why they do that. That is part of why I'm active on the board, to let other women know that yes, I experienced XYZ (even though they deny it), and yes you'll get through it!

    Just so you know, I had heat and swelling right off the bat, at the end of the first week. It wasn't red though until a couple weeks in. But heat yes, swelling yes. I felt microwaved. It did go away.

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

    I don't think anyone goes through rads their entire course without getting red, feeling heat, some swelling and such. That's a given. Just like with chemo feeling like shit to some degree will be a given. Once you are done with rads it does take awhile for things to subside and hopefully go away. As with anything we are doing, who knows if it will work and who knows what se we may have or what may stay with us. We are all so different.

  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    Just because it went away for some does not mean it went away for all. If that were the truth there would be no call for all these radiation topics, especially this one. And it may take ten years to know for sure what the risks actually were for each person

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

    I didn't say it's the same for everyone, hence my we are all different comment. Everything we do is a risk, bottom line- or don't do..

  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    Here's another radiation risk:

    Increased risk of developing lung cancer after radiotherapy for breast cancer

    Date:
    April 6, 2014
    Source:
    ESTRO
    Summary:
    Women who have radiotherapy for breast cancer have a small but significantly increased risk of subsequently developing a primary lung tumor, and now research has shown that this risk increases with the amount of radiation absorbed by the tissue.

    More at www.sciencedaily.com



  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    I have tears for what people have gone through and the sometimes futility of this process to remain alive. I quote Runor - "Cancer is not the big picture. Cancer muddies the big picture. Cancer is the trees and not the forest and in the middle of it, we do not think straight. We DO NOT grasp the big picture because the medical community largely also does not grasp the big picture. I hate this. I hate not knowing what to do."

    My story is for those with lupus or have lupus-like symptoms or mixed connective tissue disease (MCTD). I hope I can help you know what you might be getting yourself into if no doctor has forewarned you or considered it at all.

    My story is different and I am trying to figure out where I am now. I wasn't told that rads were not for lupus patients. Why? Because no one has actually diagnosed lupus though I have lived it since 1994. And though I tested positive for Mixed connective tissue disease in Oct 2016, no one cared to check that fact before sending me to rads because I couldn't breathe properly and could not stop coughing.

    First I was undiagnosed with reoccurrence and then the Ibrance stopped working for me and so there were lymph node masses closing off my superior vena cava vein to the heart - the right bronchials to the lung - and two masses of them closing the main airway. Those came on during radiation of the bronchial ones, swiftly and horribly.

    I was treated with 5 second zaps twice each day for 15 days then the second for the airway was to the broad basin above the collarbone to reduce the two masses of nodes, huge things. That was 5 second zaps three times for 10 days.

    But I had to breathe.

    Hindsight is I would have gone on Xeloda months prior to avoid this.

    Four days after the first rads started I began to have a different breathing problem when getting into bed, I was gasping and soooo unconfortable from the abdomen and seemed like the front but maybe the back. Soon had to sleep sitting up, still do half the time but getting better it seems some nights.

    I did not know but already I was into one hell of a lupus flare induced by the radiation. That became worse and worse. I reported it from the beginning and kept doing so, no one thought it was the rads. ugh By the time the second rads started three weeks from that day, I was unable to lay back on the table without suffering, it was like training to deep sea dive, the panic of no oxygen and it took me a long time to get down and stay down. I asked my tech if I had that before and she said no, I had been fine until she saw me again.

    Back tracking, the first rads were done, two weeks were between them and the second rads and I did one cycle of low Xeloda, testing the waters on tolerance. And during that time the flare spiraled into the familiar I have had mayne 20 times in 25 years - Marlar rash on my face was ugly this time and lumpy instead of the usual smooth, (I have photos of both ways on me) the joint pain so I could barely walk or move my arms or even write, the fever daily, hot and cold intolerance huge! the sheer exhaustion, not able to get out of bed even for two weeks, but I did get up and go because we have to keep going. I was shaking from even trying to make dinner and had to let Hubby do it all for awhile. My hands still shake. The short time I was on the deck IN THE SHADE I got a worse flare and learned my lesson, the daytime is not to be trusted after rads if one has lupus, not even the shade.

    Now one could blame the Xeloda but I knew what I was living. Lupus flare. The regularlly experienced flare quit after two weeks, just turned off. No explanation. The rads induced whopper that was before also continued.

    Except for the breathing. And then the polymyositis started - or became apparent that is what it was - no central strength. *See full definition below, you need to know if you could have lupus. I could not even get a breath to blow my nose, it was hard to breathe. And the constipation (blamed on Xeloda then, but not now) because my intestines have temporarily I hope lost the ability to contract. I commented to my husband, "It is weird that I feel no power to go to the bathroom. I cannot blow my nose right. I can only take three swallows of water and am breathless. I cannot lay down at night now. And I was going through that time when I couldn't use my right shoulder and that was before the regular flare," I said. That was about three weeks past the last rad. It just accumulated. The "regular-type lupus flare" had come and gone while the powerlessness and breathing problem continued.

    I saw the RO and he said the breathing problem could be scarring from the first rads on the bronchial. But the deal had been before I started that he did not expect there to be any scarring or problems. But now he thought that could be it. But now I know better.

    Nine days ago the pain started that is more of this lupus flare from hell. And how I know I have polymyositis. It started in my abdomen below breast over the liver and spleen areas, tenderness in front on both sides, then around my sides equally. By fifth day it spread up my back. The coughing was unbearable and uncontrollable, so we wanted to blame that. I had a chest xray which was clear. But that reading led to the **next problem.

    Today I have pain in the sides, abdomen and back to the bra line - like a terrible sunburn that won't quit and that also feels like I have been beaten across the back. I am waiting for this cycle to end.

    **Next problem. Shrinking lung disease with lupus. I have all criteria of this. Dx with COPD, clea lung xray, elevated hemidiaphrams, very low oxygen volumes, dyspnea and orthopynea (both breathless, last when reclining which started with the first rads, remember)

    I have the chronic cough still to the point of gagging and cannot eat without coughing. That has been going on for a long time but the cancer placement I had was blamed - now we see it is still there and worse. I choke on food and water and cannot even swallow my saliva quite right.

    Shuffled from one doctor to the other - and then this beautiful oncologist that replaced my oncologist (mine went to Alaska to study holistic practices to add to his practice) the new one say with me for an hour going over the overlap of lupus and cancer, he defined it and explained which was which and how to test to see what will help and he got me into a new rheumatologist in a hurry since the last one sucks.

    Anyway, I wait for help and for hope. But I would not do the rads again after knowing what I know. I would wait for the Xeloda to work, even if it took two more months for me to breathe right.

    I hope this helps someone who does a "lupus" search. I really do.

    Diane

    *Myositis

    Polymyositis is a connective tissue disease that triggers inflammation and muscular weakness. The cause is unknown, but polymyositis is thought to be an autoimmune disorder, possibly triggered by a viral infection of muscle tissue.

    The disease is more common in women than men and tends to develop between the ages of 50 to 70 years, although anyone of any age or either sex can be affected. Usually, the muscle weakness develops gradually over the course of a few weeks or months. The inflammation may spread to other areas of the body including the heart.

    Since symptoms differ between individuals, polymyositis is hard to diagnose and may be mistaken for muscular dystrophy. In many cases, polymyositis is associated with other autoimmune disorders of connective tissue such as scleroderma, systemic lupus erythematosus, rheumatoid arthritis and Sjogren's syndrome.

    The symptoms include: (I insert, we can see how cancer and drugs can overlap so you don't know what you are going through for sure).

    The shoulders and hips usually affected first

    Muscular weakness

    Muscle wastage

    Muscle pain

    Fatigue

    Breathlessness

    Swallowing difficulties

    Tremors, particularly of the hands

    Wide-footed stance and walking style

    Clumsiness

    Tendency to fall over.

    Polymyositis develops gradually over weeks or months. By the time the person experiences symptoms, they have already lost around half of their muscle fibres to the disease. The head, hands and feet are usually untouched by the disease. Difficulties may include:

    Profound muscular weakness in affected body parts, such as being unable to lift the arms above shoulder height or lift the head off a pillow

    Voice changes, if the muscles of the larynx are affected

    Problems with swallowing if the oesophagus is affected, with a tendency to regurgitate food

    Peristalsis (the muscular contractions of the bowel) may falter, leading to constipation

    In its later stages, abnormal shortening of muscles (contracture).


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

    Oh dear, Bluebird, rads are a terrible thing for many of us, and so much worse for you. My heart goes out to you.

    Thanks Marijen for all the info. RUNOR, as has been said by some others, you deserve to be seen for this swelling in your arm. Early signs of Lymphedema are strange sensations, a feeling of tightness in the affected arm. It is CRUCIAL that you get seen for this ASAP. This is an example of the expression "A Stitch in time saves Nine" It is much easier to reign possible Lymphedema in in the early stages when the swelling is only minimal. Treatment at this point would be pretty easy, - measurements, Manual Lymph Drainage Therapy and a prescription for a Compression Sleeve, if necessary. The compression sleeves are relatively expensive, so using a prescription for one means your insurance has to pay for it, is required to pay for it. Change doctors if they are dismissive of your concerns, you are paying them for a service. If they don't want to take care of people properly, then they should get out of healthcare.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    Thanks MacB - I don't know worse by any means just different and avoidable. if only I had known or been told.

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

    Bluebird, your situation is an example of cookie cutter medicine, still the miserable standard in the bc industry. Makes me sick, I should never have had their frying done, and neither should you. I worry they have damaged my heart and my thyroid gland. They didn't even try and protect my thryoid, as if it wasn't important at all. I started having this episode of feeling I was almost choking, a weekend after 2 weeks of "frying treatment " I had to sleep sitting up for days because I felt like I couldn't swallow my own saliva, felt like I was choking and drowning when I layed flat. I saw the stupid RO who told me "We didn't expect that to happen for another week " Another f*cking week, WTF???!!! She didn't TELL me that was even a possibility. That stupid woman at Seattle Cancer Care Alliance (SCCA), completely blindsided me. You know, the initials, SCCA, I always say jokingly none of those C's stand for CAREFUL or COMPETENT, although in actuality, I am not kidding.

  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    Thyroid shield: I read here on BCO somewhere that they don't use a shield because the radiation can go through the thickness of cement at whatever it's pointed at. That's why some people get redness on their backs. I have lung fibrosis on radiation side (I don't know how much) and thyroid nodules they may or may not be cancerous due to the radiation. There are many studies and articles regarding breast cancer patients are more likely to have thyroid cancer. Apparently the nodules have to be at least 1 cm for Medicare approval of biopsy. Medicare refused to cover the thyroid specialist. Even though one is covered with calcification and if it's "lighting up" with Ultrasound, they don't know. AND two months after radiation I had Delayed Breast Cellulitis (DBC) which caused breast edema/angioedema that required many extra office visits, antibiotics, IBC biopsy, prednisone treatment, and 20 LEPT visits. All because they didn't have a clue. This further aggravation has been going on for over a year now. Still wearing a Jovi-pak (compression device). I didn't get scalded, that I'm grateful for, but I was not informed that the risks may play out for ten years.

  • pingpong1953
    pingpong1953 Member Posts: 362
    edited July 2017

    Bluebird, I am so sorry about all of the misery you've been going through! Autoimmune diseases are so frustrating and hit so many parts of the body that it's hard to tell where one problem ends and another one begins. I've had lupus for over 30 years (I'm 64) and at my first meeting with the RO he told me that he STRONGLY advises against radiation therapy because of the lupus. He didn't say he would refuse to do it, and since I still had chemo to go through I had plenty of time to think about it, but I basically decided during my drive home that he was right and I would skip it. I'm perfectly OK with the decision, even with having a mastectomy (except for those d**n drains!) My sister, who is an RN, was happy with my decision, because she feels that radiation in general is too unpredictable, even without lupus.

    My main concern, and I may be borrowing trouble here, is that if I were to develop brain or bone mets I wouldn't be able to have them treated with radiation, which seems to be the most common treatment option.

  • macb04
    macb04 Member Posts: 1,433
    edited July 2017
  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2017

    Sadly, not all insurance companies cover compression garments, whether or not prescribed. (Medicare doesn't cover them at all). Mine was prescribed, and my insurance before Medicaid covered it…but the boutique where I bought my set did not take my insurance. My LE doc, who helped draft the bipartisan Lymphedema Treatment Act (stuck in committee forever), included language to compel coverage for compression garments under insurance, Medicare & Medicaid. Ironically, even if you had only a lumpectomy, it's considered a “partial mastectomy" entitling you (if you have Medicare) to one free prosthesis every two years and two mastectomy bras a year! But one sleeve and gauntlet? Nope. Not yet.

    Get measured precisely and accurately and then go online to LympheDivas.com or CompressionSale.com. They have discontinued sizes, strengths, colors and patterns on sale at deep discounts (barely more than the cost of a pair of compression stockings).

  • sdianel
    sdianel Member Posts: 49
    edited August 2017

    update - it is now 9 weeks and breast still red, hot, swollen and painful. Doctor doing nothing. GI doc put me on antibiotics which helped breast but radiologist refused to prescribe them. Tomorrow going to Infectious Disease Nurse Practitioner after insisting something be done or they should tell me what it is and that I'll have to live with it. Radiologist just keeps saying he never sees this! I found many cases online. In 9 weeks other than antibiotics and Silvadine cream when open sores, no diagnosis and only advice now that sores closed up, is moisturizer and take pain meds. Offered hyperbaric chamber again. Since I no longer have open wound don't see how that would help. I do want to say that all my other team members have been awesome. Just not happy with Rad. The office called today to schedule a follow up appt in 6 weeks!! I said no thanks!!

  • sdianel
    sdianel Member Posts: 49
    edited August 2017

    Infectitious Disease Nurse Practitioner diagnosed cellulitis! 2 antibiotics 10 days. On day 5 and slight improvement. Worried will have to get IV antibiotics. If your breast is swollen, hot, red and sore, insist on 2nd opinion!! Cellulitis can become sepsis!

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

    I've been through that a couple times, once in my non rad implant side. Try not to worry. Abx works very well. Just keep an eye on it and if it starts going backwards then let that doc know to try a different abx.

  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    There is one post at BCO where someone actually went to bed ok and woke up with a fever and sepsis. So pls be very vigilant. Some symptoms are fever or chills, racing heart, feeling ill like with the flu. Be careful.

    7 symptoms of sepsis

    http://health.facty.com/conditions/sepsis/7-sympto...


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

    That's a stage IV lady who is having issues with her mets right now. Not saying not to be on the look out, but stage IV are more compromised than the rest of us and have a lot more things that go wrong than other stages in general.

  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    That depends on what other morbitities you might have and you don't have to have cancer to get sepsis

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

    That is true however the way your wrote it sounded like it's highly likely in that person's case and we don't know that. If it were me I'd be immediately scared. I felt it was important to point out that the person who quickly got sepsis is stage IV with other stuff going on as well. One should always be alert esp with this lousy diagnosis.

  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    I don't think I wrote it that way but what is true is even doctors and nurses miss it. I won't say what happens then because that is truly scary.

    Wasn't it great what Beesie and Barred Owl did for us?

    Have a good evening Artist

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

    I just wanted to bump this thread up. I want to make sure the horrific experience I went through with the rads doesn't get buried. Like they completely fried my Thyroid, that's why I am having so many issues with my metabolism. They cause Thyroid cancers, because weren't they careful with their irresponsible radiation "treatment "

    https://www.sciencedaily.com/releases/2015/03/150307095938.htm

    After breast cancer diagnosis, risk of thyroid cancer goes up

    Date:
    March 7, 2015
    Source:
    The Endocrine Society
    Summary:
    Breast cancer survivors are at increased risk of developing thyroid cancer, especially within five years of their breast cancer diagnosis, according to a new analysis of a large national database.
    Share:

    FULL STORY

    Breast cancer survivors are at increased risk of developing thyroid cancer, especially within five years of their breast cancer diagnosis, according to a new analysis of a large national database. The study results will be presented Thursday at the Endocrine Society's 97th annual meeting in San Diego.

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

    Still have tightness under my arm from RADS which I hate. Have to keep stretching. Wish I had listened t myself and never done their stupid frying.

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