Wish I had never,never done rads, DEEP REGRETS

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

    Busgirl, I sent you a private message.

  • Phillipians4
    Phillipians4 Member Posts: 21
    edited July 2016

    ChiSandy - I was actually reading thru all these posts to see if anyone had any issues with rads and skin cancer. So I was glad to (unfortunately for you) to see your post

    I just completed a bilateral NS mastectomy with TE's & an auxillary lymph node dissection. Neo adjuvant chemo completed. I havemt gotten the final path report back yet but the BS indicated I would likely need radiation. My health history also has melanoma twice within the last 6 years that was caught early. I dont want to trade one problem for another, BC for skin cancer, by doing rads so am trying to research as much as I can.

    Another thing that turns me off of rads is that my mother had them after her lumpectomy about 35 years ago and then 20-30 years later she had Stage 4 lung cancer. Now she did smoke so we dont know whether that cancer was from smokinh or radiation. She died 5 years ago from complications of the Lung Cancer. I miss her dearly and wish I could ask her if she would do any of her treatment over again , given the chance.

    I think I may call my dermatologist next week and ask them their thoughts. Anyone else have any knowledge of rads having the skin cancer as a side effect?

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

    Annette, if your mom was a smoker, then that was definitely what caused the lung cancer. Radiation-induced sarcoma is a distinct diagnosis, different from the vast majority of lung cancers, and would have been conspicuously noted in her charts and discussed with her and any loved ones with whom she shared information. Tobacco (cigs and chewing/snuff) is the one product that, if used as directed, will eventually kill its user, be it from cancer, COPD or heart disease.

    As to my back mole, the path report came back “highly atypical, dysplastic but not malignant." It's a stretch to say it was caused by the radiation beam's focal point being at that spot where the table stopped the beam. I don't have the exact diagram of the trajectory of the beams as plotted by my RO and the physicist.

  • Houston2016
    Houston2016 Member Posts: 317
    edited July 2016

    OMG I'm so sorry to hear your story. I have not done rads but it's on the table. I've been asking questions about rads on these boards and this is the type of results that I dreaded is going to happen. Not only that it may even cause heart damage having radiation to the left breast.

    What I wonder is what is the outcome of not having a recurrence for someone to endure this risks. If there is any benefit it may only prevent local recurrence. As someone going through rads may still get distance recurrence. This will definitely make me think twice before anything

    I think you need to sue that hospital because they need to be out of business. It's a terrible thing to have bc and having to go through the torture of rads. Any one has suggestions?

  • Houston2016
    Houston2016 Member Posts: 317
    edited July 2016

    Annette- I have a question for you. Given that you are stage 1 and small size tumor. Why wasn't a lumpectomy being considered? When you do neoadjuvant chemo I immediately thought it's for preceding a lumpectomy. But you have a mastectomy and then radiation? Why it seemed you have a very aggressive treatment. Thanks for sharing.

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

    Hi Annette, Hi Houston2016. Thanks for chiming in to my thread. I am glad I had this posting out there where questions can be raised. Women are still given the message that "That doesn't happen anymore ". Or, other women say it was only my bad luck, that these problems don't happen elsewhere. Look around these boards. There are dozens of bad radiation outcomes stories here like mine. My Left arm, which had no procedures done on it, hurts at the shoulder every single damn day. I fight against the creeping tightness all day long, stretching and stretching. I don't know if the "gains" will ever outweigh the drawbacks. What all this means to me is my suffering is ongoing, never ending till the day I die. And as I have seen before on these boards, many,many many women do these terrible "treatments " and still go on to be Stage 4. I fear that still, and got no peace, just feel like I am in jail.

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

    Things I've learned about radiation:

    First, the radiologists and "breast team" don't tell you about all the side effects that can happen from radiation. The form I signed was definitely lacking in explanation of the side effects and missing some and the statistics of occurring.

    Second, they didn't give me something in writing to refer to and/or look for following treatment in case a side effect should occur, or what to do if it does.

    Third, they aren't knowledgeable about side effects and we have to do the research that they should have already done. In my case seven weeks have been wasted while they figure it out, so far.

    Fourth they don't tell you that some side effects can turn up months and years later, even ten years later or more. Radiation is necessary evil or is it? It seems to be from the dark ages. If 250,000 men had to deal with new breast cancer each year, you think better ways would be found? And they wouldn't blow off or belittle the fear, the pain, discomfort, lost work time, extra expenses, lost quality of life from radiation side effects that they do now.

    Fifth, radiation can only be used once in each body area. How great is that? Now we get to fear that if the cancer recur or a different one pops up, we have one less recourse.

    I regret that I didn't get a second opinion or find a radiologist that was knowledgeable and honest. Mine was very good at denying that symptoms were from radiation as long as she could. At this point I still would have done the radiation, but who knows how I'll feel if worse symptoms and diseases show up. Look out for recurring lymphedema, recurring non-lactating radiation mastitis also known as delayed breast cellulitis (breast inflammation, infection, tissue damage, breast edema), brachial nerve injury, lung scarring, pneumonitis, heart damage (coronary heart disease, pericarditis, heart muscle damage), loss of hair, sweat glands in axilla, radiation induced cancers (leukopenia).





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

    That's why it's important to choose your rad team carefully. I was given all details of SE, exactly what rads is down to some physics which I don't understand anyway, tips, care in a folder and an RN onsite at all times so if you have questions, she's there as is the ro as well. If at the new pt visit had I felt the team is really not with me and for me then I would have looked for another team. Also looking at reviews helps too. For each and every doc I searched for reviews. Too many bad ones and that person is out.

    At your new pt appt is key. Go in with questions. You have this board here full of info so jot down specifics for the ro to answer and find out what kind of support/care they offer. If you're not satisfied, then don't go forth with them. But don't throw rads out the door based soley for lack of this and that at that clinic. Research the pros and cons specific to your case, as you did with chemo if you had it. The regret posts while unfortunate for the person does provide great insight into what to look for as you go forth in your own journey with rads, or no rads.

  • wallycat
    wallycat Member Posts: 3,227
    edited July 2016

    I am so sorry for anyone dealing with bad experiences on their journey. I did a ton of reading and came with a list. My breast surgeon warned the radiologist that he better be on his best game or I would bolt. I listed my concerns and he was shocked how thorough I was. Although he claimed that "these things rarely happen," I pointed out that every step of my journey went outside the bell curve...from diagnosis to final pathology.

    I am sure that it is really hard to predict outcomes for each of us since we are all so different but I agree that all the risks should be addressed!

    I think my final freak out was when my boss's mom developed lung cancer 20 years after her initial rads. Sometimes, rads are a necessity and we all take treatments that will help keep us alive, but when I read news articles "blaming" women for opting for mastectomy vs. lumpectomy, they clearly do not understand the full picture. (And sadly, some gals will have to have rads even after a mastectomy.) My heart goes out to you all.

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

    Something is eventually going to kill us. For some it’s mets. For others it’s another cancer, either secondary or unrelated. For still others, it’s a malevolent violent intervention, whether accidental, natural disaster or as a result of crime or act of war. If we’re really lucky, it will be something swift & merciful, at the end of our theoretically normal lifespan, such as a major MI or massive stroke--preferably in our sleep.

    Given the choice of getting mets within a very few years or the lower odds of developing a secondary cancer (and not necessarily stage IV) decades hence, I know what I’d choose (and did choose).

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2016

    Chi, one of the citations that Mac pulled has info that relates to you. It's from a book published in 2003 which as you know makes the info old by the time it's published "http://www.ncbi.nlm.nih.gov/books/NBK13999/

    Emphasis mine. Not sure if you picked up on this statement.

    Skin Cancer

    It has long been recognized that basal cell carcinomas and squamous cell carcinomas (nonmelanotic skin cancer) tend to occur in the same individuals. This represents the impact of sun exposure, a shared risk factor. Thus, those who have nonmelanotic skin cancer should undergo regular surveillance for further skin malignancies and should avoid further sun exposure. Individuals with dysplastic nevi may develop multiple cutaneous melanomas and should undergo regular evaluations by experienced clinicians. Certainly those who survive an initial melanoma are also at elevated risk (> 30-fold according to a recent report) for a second melanoma.

    By agreement with the publisher, this book is accessible by the search feature, but cannot be browsed.

    Copyright © 2003, BC Decker Inc.


  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2016

    Just wanted to chime in on the subject of radiation caused skin cancer. My derm, who I trust absolutely, says that radiation absolutely causes skin cancer, even in areas not directly radiated. A month after my radiation ended, I had an atypical mole cut off my back. Luckily it wasn't cancer yet. She says its vital that I get skin checks every 6 months for the rest of my hopefully natural lifespan. I plan to do so.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2016

    Mac and all that had complications of radiation. Sorry.

    Mac you pulled some decent studies about complications. Consider doin a science thread "Long term Complications of Radiation and or Chemotherapy". It could be a repository resource for the studies you and others have here with the addition of other studies. The difficulty in a thread like that is in the translation.

    I recently did a thread about beta blockers. I have a strong background in beta blockers, thus could facilitate the discussion. Facilitating the radiation discussion would take someone with a strong physists background. But overall, it's a thought. There isn't such a central thread on BCO. Your study on Tamox increasing lung fibrosis in radiation patients was a "no shit" moment.

    Please, keep bumping this thread. The phrase "The good, the bad, and the ugly", this is certainly the bad and the ugly of radiation therapy. In my nursing experience I didn't have many patients with breast complications as I was primarily in different units. I did though over the years have lot's of patients with complications post prostate, GI, Genitourinary. It did convince me that if I were to have cancer, radiation was not high on my list of treatments.

    I was going for a prophy due to family hx when my BC was found. Mammo failure, but I had a MRI b/c of the sequencing to get approval. Likely wouldn't be here if I wasn't in the pipeline.

    The point related to this discussion is radiation wasn't indicated. I didn't have to make a decision. But I would have likely chosen "anything else" b/c of the very negative troubles of patients seen over decades. But truly can't say. I didn't have to cross the decision line..

    It's one thing to deal with statistics, it's another thing to deal with the GI bleeder secondary to prostate radiation of x years ago.

    You and several mentioned that there should be a place that we can get all the info related to each cancer, treatments, and untoward effects. BCO provides allot. BUT so much is left up to us to research on our own. I have an advantage knowing the lingo, nightmare when others don't. perhaps, leaving things as they are as most treatments have threads related to each where discussion occurs re: problems.

    Healthlines is site I've recently started recommending as a source. Previously, it was Mayo, WebMD. But none of them come close to what's been discussed here.

    Mac You may not be able to do anything legally now. But all radiation facilities are regulated by an arm of the Nuclear Regulatory Commission(NRC). The facilities have site inspections and accrediting responsibilities. Think about a complaint to them Please, it will do good and put SCCA(sic?) in a position to explain what happened.

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

    Hi littleblueflowers, thanks for the info from your derm about risks of skin cancers increasing even in areas seemingly not directly affected by radiation paths. That was not something I knew about, wish wasn't true because it is so frightening, and I have already been terribly harmed by radiation "therapy ".

    sas-schatzi, I appreciate your reasoned response to what has been said on this thread of mine. Perhaps I might set up an area like you said, but not sure I could give it the good physics background that might be more helpful. Perhaps someone else will take a go at that. I mainly started this thread so that the real facts, not the sanitized versions the RO and the bc industry tell us, would make it out there for women to read about. I am interested in seeing about talking to the NRC. However, I have extremely strong doubts that they would care, or do anything about it, kind of my word against theirs( SCCA) that anything bad happened at all. I looked at the chart notes the RO wrote once, when waiting at HBOT to see a doctor. The RO never mentioned even one word about my skin breakdown at week 4. I guess she knew it did not even remotely meet Standard Of Care, what happened to me, and decided to prophylactically prevent a lawsuit or sanctions by the state boards by fictionalizing her decription of events into a better outcome. This kind of stuff happens all the time. It is unfortunately the way the world works, especially the bc and medical industry.

    It wasn't possible for me to separate fact from fiction at the time I was choosing a bc team. I was basically hounded into care, first by my family, and then was told SCCA was Wonderfullllllll. Hoped they were, but didn't have time to research better because of all the awful pressure on me. I regret I listened to all those people, they don't have to live with my perpetually aching, messed up arm, but I do.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2016

    Mac. next week HOUND ME. I have a contact at the NRC. Haven't talked to him since 2014. Maybe he's retired or whatever. But it's worth a shot to change things. I can try to pick his brain as to who to contact.

    Your not going to believe this, it is so serendipity. After posting here, I had a member contact me about something else. She's a physicist(sic). I told her about this discussion. But it will be awhile before she's available. Surgery upcoming. Can't predict the future, but who would think that when I said we need a physicist(sic), the next person I talk to is one.

    Talk about Las Vegas odds.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2016

    I've only meet one Physisist(sic) in my life. He gave me a clue what it meant to the hospital facility to have him on staff. Big. Still shaking my head at the wonder. Hope all this works to a change, cuz she's pissed too about the radiation stuff.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    Hi everyone,

    I'm the physicist  mentioned by Sas-Schatzi. I can try explaining certain aspects of radioactivity and radiation, but I'm just a physicist, so I do not know much about the interaction of x-rays used for radiation treatment with biological matter on cellular or molecular level, or how body physiologically reacts to the damage done by radiation. When I looked in the biological response of breast tissues to rads, I noticed a few conflicting papers: some mentioned that rads stimulate the immune response because they injure tissues, and some - that they also suppress immunity over a long period of time. As I remember, they did not observed a meaningful recovery of the immune system over a period of 3-6 months. I have to go on Pubmed and do a good research,  so , please, do not rely on the  info that I just posted.

    Also, I was troubled by the fact that rads are prescribed so casually, and looked at numerous posts about self-reported SEs of rads. The picture looks like a classic radiation poisoning even when the treatment is given only to the breast. ROs keep telling that's the treatment is external, and is different from other cases when the internal organs are irradiated. The thing is, no one cancelled laws of physics, and the general mechanism of the interaction of  the x-ray beam with any type of matter (lead of human tissue) produced scattered radiation that goes everywhere. There is no way to avoid it or shield from it. The amount of scattering may not be as much for human tissue as for lead simply because the density of human tissue is much lower, and the probability of interaction of x-ray photons with molecules is not that high (hence the usage of high-intensity beams).

    All this needs to be researched, and this is not exactly my area, but I'll do my best  to answer your questions, if any.


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

    dragonsnake, it seems everyone given rads is told they will experience a little fatigue. But four days in I felt nauseas and ill all over like the flu and that continued thru the 33 days of treatment and after. The RO and the head nurse tried to tell me that never happens with radiation. However, I have never complained of nausea and knew that could not be true. I finally figured out that radiation is toxic - poisoning as you say. All the dead cells the body is trying to remove as it gets hit over and over. Our bodies are working hard to detox.

    I agree with what you said about it being prescribed so casually. Like take this it's for your own good. What's in it, oh don't worry. Somehow they are like used car salesmen, don't want to tell you that the car you're buying is a piece of junk. They don't explain what is going to happen on a cellular level. And hide the fact that side effects can turn up long after you think you're done. "Oh just seven weeks and then a month or two of fatigue afterwards, everything else that might happen is less than 1%". No wonder that the NRC is in charge of this. I was told 66% lowered chance of recurrance but given no formula of how that is determined, pretty general BS I think.

    Many of us take the treatment because of pressure from family members. And family members don't have a clue what they're pushing. We have to make a decision at the worst time, usually after surgery. I was started even before I was healed from surgery, should have said no to that. They don't even tell you it will lower your immune system and to be careful about being around sick people. I suppose that's common sense. What about the ladies that go to work each day? ( I still say 60,000 men would not put up with this). Oh, and they don't really follow up, as soon as you're done there is one more appointment for a "skin check". Anything bad that happens is left out of their notes.

    Yes, there should be a place where all the information is gathered, the truth is in the details. Why do we have to search for it? Why don't they want us to know

    Thanks for being here, dragonsnake.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    What I meant under radiation poisoning is what its known as radiation syndrome or radiation sickness. Nausea and vomiting, dizziness, fatigue, metallic taste, diarrhea, leukopenia, burns to the skin - these are common when the whole body is radiated. It makes sense to me when ROs insist that rads induce mostly the local effects of skin burning, but it bothers me when they dismiss the effects of scattered radiation on the whole body. GI tract is the most sensitive organ, and hence certain people experience the metallic taste because the taste buds are very sensitive to radiation. Lining of the stomach and intestines is also very sensitive, hence diarrhea (bloody diarrhea in case of high doses). Bone marrow also sensitive, hence leukopenia and immune system impairment. If I remember it correctly, radiation affects fast-dividing cells more than others, just like chemo. Hair loss is also taking place at high doses. Now, about doses. A standard dose for the breast is 50 Gray given at in 2 Gray fractions. Gray is energy in joules per 1 kg of mass. Say, if the breast is 0.5 kg it will cumulatively be exposed to the total 25 Joules of energy in 1 joule fractions (50 gray for 1 kg breast is equal to the total of 50 Joules ) . A dose of 2 to 10 Gray over the whole body delivered in a couple of hours is lethal. If the body weight is 75 kg (165 pounds) the total is 150 to 750 Joules (compared to 25-50 Joules locally). You may start feeling the effects of radiation at 1 Gray delivered to the whole body, i.e. 75 Joules for a 165-pound person. In this case, 25 Joules is only tree times less than that, but 50 Joules is quite comparable, and I bet its effect is not negligible. The flaw in these calculations is that the lethal dose is usually delivered within hours, whereas radiation treatment is given in fractions, over the lengthy period of time, giving human body a chance to repair the damage. This damage is two-fold: DNA damage and ionization, or production of ions in the cells. I believe, ionization triggers a cascade of different reactions, none of which I'm qualified to explain.

    Below is an excerpt from a Wikipedia entry about radiotherapy. Wiki is a good source because it's usually unbiased. Please refer to the whole entry for references. The only point I would like to make is that even if the breast radiation is local, scattering affects the whole body, and thus all SEs listed below may manifest themselves. Each individual is unique in his/her response to radiation, hence a big range for the lethal dose, and the severity SEs in each case. Why shielding is impractical, I can explain in a separate entry, if somebody is interested.

    Radiation therapy

    Side effects

    Radiation therapy is in itself painless. Many low-dose palliative treatments (for example, radiation therapy to bony metastases) cause minimal or no side effects, although short-term pain flare-up can be experienced in the days following treatment due to oedema compressing nerves in the treated area. Higher doses can cause varying side effects during treatment (acute side effects), in the months or years following treatment (long-term side effects), or after re-treatment (cumulative side effects). The nature, severity, and longevity of side effects depends on the organs that receive the radiation, the treatment itself (type of radiation, dose, fractionation, concurrent chemotherapy), and the patient.

    Most side effects are predictable and expected. Side effects from radiation are usually limited to the area of the patient's body that is under treatment.

    The main side effects reported are fatigue and skin irritation, like a mild to moderate sun burn. The fatigue often sets in during the middle of a course of treatment and can last for weeks after treatment ends. The irritated skin will heal, but may not be as elastic as it was before.

    Acute side effects


    Nausea and vomiting
    This is not a general side effect of radiation therapy, and mechanistically is associated only with treatment of the stomach or abdomen (which commonly react a few hours after treatment), or with radiation therapy to certain nausea-producing structures in the head during treatment of certain head and neck tumors, most commonly the vestibules of the inner ears.[As with any distressing treatment, some patients vomit immediately during radiotherapy, or even in anticipation of it, but this is considered a psychological response. Nausea for any reason can be treated with antiemetics.

    Damage to the epithelial surfaces
    Epithelial surfaces may sustain damage from radiation therapy. Depending on the area being treated, this may include the skin, oral mucosa, pharyngeal, bowel mucosa and ureter. The rates of onset of damage and recovery from it depend upon the turnover rate of epithelial cells. Typically the skin starts to become pink and sore several weeks into treatment. The reaction may become more severe during the treatment and for up to about one week following the end of radiation therapy, and the skin may break down. Although this moist desquamation is uncomfortable, recovery is usually quick. Skin reactions tend to be worse in areas where there are natural folds in the skin, such as underneath the female breast, behind the ear, and in the groin.

    Mouth, throat and stomach sores
    If the head and neck area is treated, temporary soreness and ulceration commonly occur in the mouth and throat. If severe, this can affect swallowing, and the patient may need painkillers and nutritional support/food supplements. The esophagus can also become sore if it is treated directly, or if, as commonly occurs, it receives a dose of collateral radiation during treatment of lung cancer. When treating liver malignancies and metastases, it is possible for collateral radiation to cause gastric, stomach or duodenal ulcers This collateral radiation is commonly caused by non-targeted delivery (reflux) of the radioactive agents being infused. Methods, techniques and devices are available to lower the occurrence of this type of adverse side effect.

    Intestinal discomfort
    The lower bowel may be treated directly with radiation (treatment of rectal or anal cancer) or be exposed by radiation therapy to other pelvic structures (prostate, bladder, female genital tract). Typical symptoms are soreness, diarrhoea, and nausea.

    Swelling
    As part of the general inflammation that occurs, swelling of soft tissues may cause problems during radiation therapy. This is a concern during treatment of brain tumors and brain metastases, especially where there is pre-existing raised intracranial pressure or where the tumor is causing near-total obstruction of a lumen (e.g., trachea or main bronchus). Surgical intervention may be considered prior to treatment with radiation. If surgery is deemed unnecessary or inappropriate, the patient may receive steroids during radiation therapy to reduce swelling.

    Infertility
    The gonads (ovaries and testicles) are very sensitive to radiation. They may be unable to produce gametes following direct exposure to most normal treatment doses of radiation. Treatment planning for all body sites is designed to minimize, if not completely exclude dose to the gonads if they are not the primary area of treatment. Infertility can be efficiently avoided by sparing at least one gonad from radiation.


    Late side effects

    Late side effects occur months to years after treatment and are generally limited to the area that has been treated. They are often due to damage of blood vessels and connective tissue cells. Many late effects are reduced by fractionating treatment into smaller parts.


    Fibrosis
    Tissues which have been irradiated tend to become less elastic over time due to a diffuse scarring process.

    Epilation
    Epilation (hair loss) may occur on any hair bearing skin with doses above 1 Gy. It only occurs within the radiation field/s. Hair loss may be permanent with a single dose of 10 Gy, but if the dose is fractionated permanent hair loss may not occur until dose exceeds 45 Gy.

    Dryness
    The salivary glands and tear glands have a radiation tolerance of about 30 Gy in 2 Gy fractions, a dose which is exceeded by most radical head and neck cancer treatments. Dry mouth (xerostomia) and dry eyes (xerophthalmia) can become irritating long-term problems and severely reduce the patient's quality of life. Similarly, sweat glands in treated skin (such as the armpit) tend to stop working, and the naturally moist vaginal mucosa is often dry following pelvic irradiation.

    Lymphedema
    Lymphedema, a condition of localized fluid retention and tissue swelling, can result from damage to the lymphatic system sustained during radiation therapy. It is the most commonly reported complication in breast radiation therapy patients who receive adjuvant axillary radiotherapy following surgery to clear the axillary lymph nodes .

    Cancer
    Radiation is a potential cause of cancer, and secondary malignancies are seen in a very small minority of patients – usually less than 1/1000. It usually occurs 20 – 30 years following treatment, although some haematological malignancies may develop within 5 – 10 years. In the vast majority of cases, this risk is greatly outweighed by the reduction in risk conferred by treating the primary cancer. The cancer occurs within the treated area of the patient.

    Heart disease
    Radiation has potentially excess risk of death from heart disease seen after some past breast cancer RT regimens.

    Cognitive decline
    In cases of radiation applied to the head radiation therapy may cause cognitive decline. Cognitive decline was especially apparent in young children, between the ages of 5 to 11. Studies found, for example, that the IQ of 5 year old children declined each year after treatment by several IQ points.

    Radiation enteropathy
    The gastrointestinal tract can be damaged following abdominal and pelvic radiotherapy. Atrophy, fibrosis and vascular changes produce malabsorption, diarrhea, steatorrhea and bleeding with bile acid diarrhea and vitamin B12 malabsorption commonly found due to ileal involvement. Pelvic radiation disease includes radiation proctitis, producing bleeding, diarrhoea and urgency, and can also cause radiation cystitis when the bladder is affected.


    Cumulative side effects

    Cumulative effects from this process should not be confused with long-term effects—when short-term effects have disappeared and long-term effects are subclinical, reirradiation can still be problematic.


    Effects on reproduction

    During the first two weeks after fertilization, radiation therapy is lethal but not teratogenic. High doses of radiation during pregnancy induce anomalies, impaired growth and intellectual disability, and there may be an increased risk of childhood leukemia and other tumours in the offspring.

    In males previously having undergone radiotherapy, there appears to be no increase in genetic defects or congenital malformations in their children conceived after therapy.However, the use of assisted reproductive technologies and micromanipulation techniques might increase this risk.


    Effects on pituitary system

    Hypopituitarism commonly develops after radiation therapy for sellar and parasellar neoplasms, extrasellar brain tumours, head and neck tumours, and following whole body irradiation for systemic malignancies.Radiation-induced hypopituitarism mainly affects growth hormone and gonadal hormones.In contrast, adrenocorticotrophic hormone (ACTH) and thyroid stimulating hormone (TSH) deficiencies are the least common among people with radiation-induced hypopituitarism.Changes in prolactin-secretion is usually mild, and vasopressin deficiency appears to be very rare as a consequence of radiation.


  • DaraB
    DaraB Member Posts: 945
    edited July 2016

    Wallycat, (or anyone...) you mentioned that you went in to your RO with a list of questions. Would you mind sharing some of the ones you felt were most beneficial to ask? Thanks!

  • Mom4four
    Mom4four Member Posts: 117
    edited July 2016

    I had radiation in 2008, I was burned and sore and very tired. The effects were not horrific but I would not do it again. My cancer came back and they cannot do radiation again, I didn't know that, plus the changes in my breast continued for years

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    Shielding during radiation treatment.

    Shielding is used to lessen the intensity or to block the radiation beam. Sources used for radiation treatment of cancer vary, but breast cancer is treated with high-energy x-rays. X-rays are highly penetrable, this means that they are not readily absorbed by human tissues and can go through without much interaction with it. How effective the material in absorbing x-rays is characterized by a half-value layer (HVL) : this is the thickness of any given material where 1/2 of the incident energy has been attenuated. Attenuation is exponential, but the steepness of the curve depends on the material and the energy of photons used for radiation. An x-ray beam is a stream of photons. The energy of x-ray photons depends the x-ray machine. Usually x-ray machines emit photons with a variety of energies ( a spectrum of energies), unless special filters are used . The usual shielding material for all types of radiation is lead. It is needed 1.2 cm (about 0.5 inch) of lead to decrease the intensity of the x-ray beam in half (HVL=1.2 cm for lead) . HVL for breast tissue is about 50 cm (about 1.5 feet) thus the x-ray beam shoots through the breast without a significant attenuation. (When doing these calculations I referred to the maximum energy applied to the x-ray tubes listed by manufacturers and assumed that all photons have the energy of 1MeV (info for specialists).Technically, such energetic x-rays should be classified as gamma-rays, but there is no clear distinction between them.)) I do not know the intensity of the beams used for radiation treatment but suspect they are pretty high, because the breast tissue is not very effective in attenuating x-rays. (High intensity is needed to increase the probability of photons hitting the atoms or molecules). In this case, you probably need meters of lead or concrete to block the beam completely, thus putting on lead aprons or laying on lead tables will not shield you anyways. What protects your other parts is that the beam is not fanning out over a big angle, and thus does not hit other parts of the body. The fanning angle can be decreased via a technique called collimation. I do not know how effective is collimation and my RO did not tell me anything about the angle. The intensity is not uniform within this angle. ROs are using at least two beams in an attempt to uniformly irradiate the breast and the adjacent areas up to the clavicle bone, ribs and auxiliary lymph nodes under the armpit. It's a big area. Scattered photons will go inside your body , but the beams themselves will not hit any other parts , hence shielding of other parts is impractical.

    How much dose can you get from scattered radiation? It's a good question. From reading medical papers I found that the heart receives 5 Grays when 50 Grays are given to the left breast, and 2 Grays - when it's given to the right, which makes about 5-10% of the total dose.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    Why radiation treatment?

    It's an experimental fact that radiation decreases the local recurrence rates for several years after the treatment. There are several studies that show 50% decrease in the recurrence rates for DCIS; I haven't looked at IDC or ILC cases. I haven't seen too many papers describing why 50%, it's just an experimental fact. The mechanism may be killing off a significant number of cancer cells (all cannot be killed because of the low probability of interaction, but a significant number can be damaged. The damaged cancer cells a diminished capacity for repair. The immune system may then take care of the ones that were not hit by radiation) and/or the immune response to trauma to the tissues. This 50% rate was found experimentally, by comparing the number of recurrences in cases treated with and without rads. If the recurrence rate is low, say 2%, it decreases it (mathematically) to 1%, which is not statistically significant. If the recurrence rate is estimated to be about 60% (6 out of 10 chance) , then the decrease to 30% (3 out of 10 chance) may be meaningful ( although it is always nice to know the uncertainty range). All these percentages are statistical, and mean very little when it comes to each specific case. We are unique individuals, although doctors treat us as part of statistics.

    According to Wikipedia, "the effect of radiotherapy on control of cancer has been shown to be limited to the first five years after surgery, particularly for breast cancer. The difference between breast cancer recurrence in patients who receive radiotherapy vs. those who don't is seen mostly in the first 2–3 years and no difference is seen after 5 years.[6] This is explained in detail here".

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

    Hi sas-schatzi, yes, I will bug you. I had thought it was fairly hopeless to get any real attention paid to what happened to me from SCCA 's sloppy "care". I like the idea of trying your contact. Thank you.

    Hi dragonsnake. Glad you can join our little party, but sorry if your circumstances bring you here. I think you can bring a needed critical thought process to this discussion that will help us all understand better. I would like more information gathered on how radiation does not seem to affect cancer stem cells, that radiation seems to make less aggressive bc cells into more aggressive cells. That is scary beyond belief.

    I left it in, but I strongly dispute the researcher 's assertion that radiation is the "safest,most effective treatment " I think it is a huge money maker, that is certainly true. I do not ever feel the long list of problems I was not told about, didn't ever think could happen, make it worth it. For me it is so, so not worth it. I always feel cheated, never safe.



    http://onlinelibrary.wiley.com/doi/10.1002/cncr.27701/full

    Radiation treatment generates therapy-resistant cancer stem cells from less aggressive breast cancer cells

    Carrie Printz

    Version of Record online: 18 JUN 2012

    DOI: 10.1002/cncr.27701

    Copyright © 2012 American Cancer Society

    Issue

    Cancer

    Volume 118, Issue 13, page 3225|

    AbstractArticleReferencesCited By

    Enhanced Article (HTML) Get PDF (1624K)

    Researchers from the Department of Radiation Oncology at the UCLA Jonsson Comprehensive Cancer Center report that radiation treatment transforms cancer cells into treatment-resistant breast cancer stem cells, even as it kills half of all tumor cells.1

    "When we look at early-stage cancer patients, we compare patients receiving exactly the same treatment, and some fail and some are cured, and we can't predict who those patients will be," says Frank Pajonk, MD, PhD, the study's senior author and an associate professor of radiation oncology and Jonsson Cancer Center researcher.

    In some cases, cancer stem cells are generated by the therapy, but scientists do not yet understand all the mechanisms that cause this to occur. If they can determine the pathway and remove the reprogramming of cancer cells, they ultimately may be able to reduce the amount of radiation given to patients along with its accompanying side effects, says Dr. Pajonk.

    The investigators found that induced breast cancer stem cells (iBCSCs) were generated by radiation-induced activation of the same cellular pathways used to reprogram normal cells into induced pluripotent stem cells in regenerative medicine.

    In the study, Dr. Pajonk and colleagues eliminated the smaller pool of BCSCs and then irradiated the remaining breast cancer cells and put them in mice. They were able to observe the initial generation into iBCSCs in response to the radiation treatment through a unique imaging system. These new cells were highly similar to the BCSCs that had been found in tumors that had not been irradiated. They also found that these iBCSCs had a more than 30-fold increased ability to form tumors than the nonirradiated breast cancer cells.

    Their findings show that if tumors are challenged by certain stressors that threaten them (such as radiation), they generate iBCSCs that may, along with surviving cancer stem cells, produce more tumors.

    The researchers' work continues as they begin to identify the pathways and several classes of drugs to prevent this process from occurring. To date, they have identified 2 different targets and drugs that could prevent it. The group has published their results of the study in breast cancer but also has made similar observations in both glioblastoma and head and neck cancer.

    Dr. Pajonk says the study does not discredit radiation therapy. "Patients come to me scared by the idea that radiation generates these cells, but it truly is the safest and most effective treatment there is/

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4341971/

    http://www.alliedacademies.org/articles/chemoresistance-in-breast-cancer-stem-cells.html

  • I_Spy
    I_Spy Member Posts: 507
    edited July 2016

    Macb04 thank you for starting this thread; you have dared to question. And wow Dragonsnake -- a scientist reviewing studies is so much different than the rest of us doing it. Keep up the good work of finding and sharing; it is very helpful.

    The most important thing about this thread is what I have learned through my cancer and the rest of my health problem journeys: DOCTORS DO NOT OWN YOUR BODY. YOU OWN YOUR BODY.

    I put that in caps because we all have a tendency to go "Well, this is what I have to do, the doctor said so." "I have to have radiation now." "I have to have this treatment now." Even if you choose to do so, we all need to realize that we have been offered choices, and we are making choices. We do not HAVE TO do anything. It is a fine point but such an important one.

    To someone who might answer that with: "Well I have to if I want to live!" I beg to differ: doctors do not have a crystal ball; they are not all-knowing beings; they are not psychic. They do NOT know more than you do on a permanent basis. They went to medical school, they know how to diagnose things based on literature and what they have seen clinically, they know the treatments to offer based on statistical models; however, you can look at those same statistical models and decide if the side effects would be worth the reduction in risk. As Dragonsnake is pointing out with the studies she is sharing, the statistical models can be looked at from different directions. Just because a bunch of doctors have decided that the stats say something and therefore automatically offer treatment x,y, and z to all patients
    "these days" does not mean they are right. The Emperor might have no clothes.

    My immediate reaction to being offered radiation was "ummmm no thank you I don't want to put the thing that causes cancer into my body to handle a cancer." I was met with some resistance from my doctors (although I have great doctors and they are nice). I was sent to see the RO for an evaluation after my DCIS diagnosis (and strong family history: mother and aunt; and my gene mutation not BCRA one of the other ones: BARD1). The RO was actually pretty insistent, and told me how they have late hours so I could come before and after work; she made it sound like a gym membership.

    Bad health journeys especially bc, are a series of choices and decisions. My right breast continued to grow things after my lumpectomy and refusal of radiation; would it have stopped growing atypia if I'd had radiation? I don't know; I don't care I still would not choose radiation. After my BMX they found LCIS in my left breast that had escaped ALL detection from MRI's, Mammo's, etc. Would that have become ILC before we found it? I think that is more likely; and having radiation on my right breast would not have prevented it.

    I would never ever tell someone "don't have radiation!" because I do not have a crystal ball and it is their journey not mine. However, I would say: "You do not 'have to' do anything. You are offered choices; become informed before you decide."

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2016

    Dragon, So nice to see you here. With your own surgery coming up, I didn't want to worry you about coming here. Bless you and HUGE hugs. We now have someone that understands the mechanics of radiation. You have now become a Huge asset to BCO. Having a person with an expertise in an area that is so technical. Is HUGE

    I guess the word for the day is HUGE .............I have a sense of relief. that you have entered this discussion.

    I mentor constipation , port thread, and a few other technical threads, I have knowledge in those areas. Kira & Binney mentor Lymphedema, Whippettmom mentor implant sizing. Other technical threads are mentored by folks that have a knowledge base in a given area.

    Oh what a relief you areeeeee, yippee..........

  • bride
    bride Member Posts: 382
    edited July 2016

    Hi all,

    Thank you Dragonsnake and sas-schatzi!

    I have a question. I was DXed with IBC, Stage 3B. Did 6 months of neoadjuvant chemo, then a radical mastectomy with ALND, then 6 weeks of radiation. My RO spent 4 hours going over side effects yet urged me to do radiation as IBC involves the skin. Half of my radiation treatments were done with a bolus. I had no skin issues and no apparent side effects other than a slight tan. Okay, here's my question: if I escaped radiation's ugly side effects, why does my RO still see me every 6 months? I'm 2 years past radiation, is it normal for ROs to do what mine is doing?

    Thanks for any input.

    bride

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

    It sounds like you have a responsible RO who is watching for long term effects. Much better than mine who has his PA see you once 2weeks after and once a few months later, and they send you on your way

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    Thank you all for the kind words. I really appreciate your posts and humbled by you kindness. I'm not a  biologists or medical scientist;  I understand nothing of molecular biology. I can only do my best  explaining  the physics  part of radiation treatment. I believe most treatments offered to us are based on empirical evidence, and haven't changed much during the last decades, with the exception of monoclonal antibodies, like Herceptin (Taxol, platinum, tamoxifen, rads -all these agents were found quite a while ago). So, doctors are continuing doing what was done before, and prefer not to take a risk. It's challenging to find a doctor who treats a patient, not a disease.

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

    Now fighting off Lymphedema from Rads damage . RO said I don't know when asked how many of her patients got Lymphedema . She probably doesn't want to know , then she can't tell her fantasy story that radiation saves lives, IT's WONDERFUL! Bullsh*t

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