Wish I had never,never done rads, DEEP REGRETS

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited July 2017

    ChiSandy, Glad to hear nothing serious was found. I hope it DOESNT get worse before it gets better. Have you strained muscles before? I'm curious based on the earlier suggestions from your PCP about the cause of your pain ("bad weightlifting technique"

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

    I’ve pulled muscles before, but only superficially and they healed very quickly. Have strained, sprained and even ruptured ligaments (including completely tearing an ACL), but never actually strained a deep muscle. In retrospect, the cause was probably a combination of spending a strenuous morning driving to Milwaukee & back, standing up and performing for 3 hrs. and hauling instruments & accessories, and then going straight to my workout when I got home—and then increasing resistance & weight too abruptly.

    The pain peaked a week ago, and with heat began to wane beginning last Friday. Oddly, using the rowing machine for cardio helps a lot.

  • Can3616
    Can3616 Member Posts: 1
    edited July 2017

    I am so sorry for all of you who have had such a terrible experience with RT. As horrifying as your side effects are, I find your treatment and care by the medical community to be appalling..

    Being diagnosed with breast cancer at 36, is to date, the worst experience of my life. For that reason I would not tolerate poor or incompetent care. I feel so blessed for my cancer team.

    I want to share my experience to help,women coming to this board for answers or reasssurance about their ongoing therapies. In contrast to many of you here, my experience has been nothing short of exceptional. I'm halfway through my radiation treatment. My breast is hot pink, itchy, swollen and sore. My menstrual cycle has ceased (an unexplainable and unexpected side effect) and most days I'm pretty tired. BUT, my team is with me every step of the way.

    My initial consult with the doctor was 2hrs 45min. Her intern showed me all of my images, drew pictures of how the beams would be set to protect surrounding tissues and organs and shared why and how the entire process would commence. The doctor walked me through every single side effect and gave me the number to her nurse who I can call at anytime, along with a number to reach the RO on duty 24hrs a day. I left the consult with a binder and 60 page text of what to expect from my treatment.

    I see my doctor after my treatment every Monday where she asks a litany of questions and gives me anything I need to ease the side effects (creams, etc.). Her nurse peeks in on me regularly as I go to my daily appointments to make sure I'm doing okay and the technitions offer me hot or cold packs every day to make sure I'm comfortable.

    I sharing this information because I want women to see that there are doctors and cancer treatment centers that genuinely care about your outcome and want to do what's best for you. If you are not seeing a doctor who answers all of your questions or simply does not know the answers, go to a new doctor! The first RO I went to was awful. I ended the appointment and found a doctor who I think was a gift to me from the angels.

    I am not in any way discounting or minimizing what any of you are going through. I really just wanted to say that I am truly, from the bottom of my heart, sorry that you all had to go through what you have gone through









  • Moderators
    Moderators Member Posts: 25,912
    edited July 2017

    Can3616-

    Thank you for sharing your experience. A good medical team can make a world of difference. We hope your treatment continues to go well!

    The Mods

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

    I appreciate your sentiments. I don't tolerate bad, incompetent care either, but despite doing due diligence, I found careless, sloppy, thoughtless " bc care" again, and again and again. At "Top" institutions with "great reputations". I am just sick to death of the whole money grubbing bc industry that still tortures and abuses the most vulnerable people. If there is a hell, then I hope the whole bc industry goes there. I have not one good word to say, not one.

  • ksusan
    ksusan Member Posts: 4,505
    edited July 2017

    I'm very sorry you had that experience. It's awful. However, please don't condemn all of my excellent caregivers to hell. Thanks.

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

    Well, if there is karma, then each will judged on their actions.

  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    Thank you for making the note about not having burns. I am terrified of getting multiple RT because of scarring. I would rather have my hair fall out than have burned skin as I want to have decent reconstructive surgery.

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

    I second Can's experience. I too was blessed to have a great caring team of techs and doctors for my radiation treatment and in fact my entire BC experience from start to finish. I realize after reading the horrific SEs some of you endured that radiation is not the walk in the park some doctors apparently led you to believe.

    I was however forewarned by my Oncologist that I would have some burning and fatigue halfway through my treatments. I did but nothing major. I had 33 treatments. I am aware some side effects like lung scarring might not show up for years after treatment. I am 6 years out next month. I was happy to dodge chemo.

    We all know BC and the treatments that follow is not one size, fits all. We all react differently.

    We all also know that just because the doctors and/or their facilities have stellar reputations it automatically means the best treatment. Unfortunately sometimes we have to find out the hard way they don't live up to the hype.

    I'm sorry for all of you who definitely deserved the best but your medical teams fell short of expectations.

    Diane




  • ksusan
    ksusan Member Posts: 4,505
    edited July 2017

    Macb, I can't argue with that!

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

    It's only a year out for me and I still have breast edema and redness. I 'm going to call it bedema. Lung fibrosis anf thyroid nodules have turned up since as well. Still have pain from three surgeries for DCIS and ANLD. I think the radiation made the pain worse. What does a good team have to do with it, they are still burning you from the inside. I had a good team, they gave me a warm blanket, talked nice, didn't keep me waiting

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

    Did any of you with significant adverse reactions have your radiation in the prone position? I'm very sorry that radiation has impacted your lives so severely.

    Lyn

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

    I don't know where to post this. Forgive if this is the wrong spot, but I am almost vibrating with ... anger? Anxiety? Frustration?

    I have done three rad zaps out of 16 and it feels wrong, wrong, wrong. I was told I would have no effects until mid treatments (zap 8) but after only three shots, I most definitely have side effects! My breast is swollen, hard, painful and turning bright pink. The incisions, that had finally faded, look angry and red again. I am getting a shorter course but higher dose of nukes with each zap.

    Is it worth it?

    I hear women say they will throw everything they can at this disease. I understand that. But then what if you get hit by a bus after your last rad treatment? Or fall down the stairs? Or eat some bad burger? Or take a foreign vacation and get ebola? The point is that this idea we have that we are 'doing everything we can to ensure a long and prosperous life' is kind of bullshit. We cannot, no matter what we do, ensure anything of any sort.

    We can all take reasonable steps to keep ourselves safe.

    - wear a seatbelt, that safety measure carries no risk

    -cook your burger well, carries no risk

    -hang onto the hand rail when going downstairs, no risk, sensible

    -cut bacon out of your diet, no risk other than a boring diet

    - do not exceed the speed limit

    -do not run into traffic

    Then along comes breast cancer and suddenly to reduce my chances of dying from this disease, I am being subject to all sorts of procedures that carry KNOWN RISKS. We KNOW that hormone blockers, chemo and radiation will damage us. It is a cold, hard fact. Yet we happily accept these known threats to our health to rid ourselves, maybe, of death by cancer. It must be understood that death by every other crazy means is still a 100% possibility, and that one of them will be your end is also a FACT. Yet we accept inflicted threats to our health and quality of life as if breast cancer is the only thing lurking in the woods. IT IS NOT! Heart disease is more likely to kill me than breast cancer and yet I lay on a table and let a big machine COOK MY DAMN HEART!! Now where is the intelligence in this scenario?

    We get sucked into the machine of panic realizing we are limited beings with limited time and oh no, this death thing, that shit happens to other people but not me! And then we accept all sorts of damage, much of which never leaves us, that affects our quality of life and in many cases, no matter what we do, breast cancer kills us in the end anyway! It seems to me there is no good outcome, no way to avoid death, no way to guarantee we'll survive the bus trip home after treatment, so what the hell are we doing?

    Am I being fatalistic and saying that I choose death? Well, as I see it, death was already chosen for me the day my mother gave birth to me. Same for my own child. The ONLY thing I can guarantee her is that one day she'll be dead. Until then, its a crap shoot. So in light of this truth, why would I continue to take treatments that can very clearly shorten my life with secondary problems, when those treatments guarantee me absolutely nothing?

    I am so frustrated with not even knowing my own mind in all this. I am having effects so early into treatment and I'd be a horse's ass not to know it's likely to get much, much worse and leave me with damage that ultimately may be what kills me, instead of the cancer. Yet we take all this treatment, accept it all, as if it is our only way to a long healthy life. WRONG! WRONG! WRONG! A long healthy life is pure luck and has NOTHING to do with our paltry efforts. In that light, I have to be stark raving mad to lay on that table and allow one more killing rad into my body. I may not be able to guarantee good health and long life but I sure can avoid things that knowingly shorten it and radiation is on that list!

    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. I am scheduled for dose 4 on Monday and I am really, really thinking of throwing in the towel. Thanks for letting me angst. I wish I knew what to think and do.

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

    Wow runor, well stated. You need to trust your instincts. This is not right " My breast is swollen, hard, painful and turning bright pink. The incisions, that had finally faded, look angry and red again. I am getting a shorter course but higher dose of nukes with each zap."

    Right, maybe the dose is too high or it's an old machine, not state of the art. You know once you do rads you are subject to all kinds of troubles down the road as well as what has happened already. Would you like a list, I'll find one for you. Did they go over the risks with you? Only you can stop and say no. Also if you ever have recurrence and a mastectomy reconstruction will be hard. Some say you can't do reconstruction after rads but you can with difficulty. Why aren't you on an AI? Do you have existing heart, lung, or thyroid issues?

    This is something you need to get more information on, it's only been three plus months since you were dx'd.

    And some recentstudies say rads just strengthens the cancer.

    I hope I don't get jumped on for my perspective.

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

    KB870, I wasn't healed enough. I wonder what the hurry was. Unbelievable how much they charged for each zap, but then Medicare pays what they pay

  • Momine
    Momine Member Posts: 7,859
    edited July 2017

    Can3616, same here. My rad doc was there every day for my treatment to check how I was doing and deal with any concerns.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited July 2017

    I'm reading this with great interest. I did the three week high-dose protocol and have symptoms of lymphedema on the area of my breast that was zapped. Marijen, that's pretty scary re: some studies show that radiation may strengthen the cancer... I've never heard of that happening. Yikes.


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

    I am not scheduled to see radiation onc until Thursday, which gives me 4 more zaps until onc doc appointment.

    I think this is not acceptable. I am becoming increasingly unhappy.

    KB870, it is true that with my botched lumpectomy (botched is a loaded term. I don't think I was botched, it was just a whole lot of rotten luck) , the bleeding, the tearing of internal stitches and being operated on again a second time within hours of first left my breast extremely traumatized (me too!!!). There was some swelling in the breast prior to radiation, orange peel skin look, big indents from my bra, and now with radiation, holy crackers! It is now visibly larger than the other breast.

    Marijen, the side effects were presented in a perfunctory way, as if they have to say them but let's not dwell on them and let's get on with zapping you.

    I think Monday I have to talk to the radiation onc. I had phoned my surgeons office regarding the swelling, to see if this is normal, and never heard back from her. I am not happy.

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

    Runor, no one can make you walk through the door and lie on the table. Just tell them you won't do anymore until you talk to your RO. Try to gather information for him/her today or just say you're not going in until Thursday. My RO wanted to get through the risks so quickly, I could tell she was upset when I started making notes but she didn't really do a good job and I'm sure she didn't want to - she would have had to tell the truth. Everything that went wrong after that, they were all in denial. They'd never seen it before, it wasn't the radiation, bla bla bla. I was sensitive etc etc. If it was all good then why am I more upset a year later? Got read everything at Radiation Recovery topic, please.

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

    We've come a long way since 1903 when Marie and Pierre Curie first introduced radiation therapy as a means of treating cancer and lupus. The field of radiation oncology is continually being improved to provide patients with better long term disease outcomes, and fewer long term side effects. This is still a relatively new treatment modality when it comes to following patients over their lifespan. Earlier detection and more effective treatments mean patients are living longer — in many cases, living well into old age. Until recently, long term side effects were not easily recognized simply because there had not been a significant population to observe.

    While not everyone undergoing radiation therapy will experience more than the short term discomfort of sensitive skin or the frustration of feeling wiped out physically, there are some possible long term issues. For many women, the end of their radiation treatments is the end of their treatment for cancer. It is not, however, the end of their need to know what to expect.

    It is important to remember that most women will never experience any of these. It's also highly unlikely that anyone would experience all of them.

    Changes to the skin
    Irradiated skin is often slightly darker, thinner or dryer than it was before. Your skin may also burn more easily from sun exposure, and be prone to infection and breakdown. Operation scars often remain tender or sensitive for a long time after treatment ends. Some women develop changes which can include small red blotches on the breast caused by dilated blood vessels under the skin. This condition is known as telangiectasia (spider veins). Telangiectasias are not a sign of a cancer recurrence, but they usually do not go away on their own.

    Be sure to use creams, lotions and oils specifically designed for sensitive skin. You will want to avoid products containing perfumes or other chemicals. Talk to a dermatologist to find products that are appropriate. Many women continue to use pure Aloe Vera on the affected areas as a safe and effective means of soothing radiated skin.

    Long term changes to the breast
    Edema (or swelling of the breast) may persist for months or years after treatment.

    A different type of swelling called lymphedema can also develop. This, unfortunately, is very common and can occur if the lymph nodes have been removed or are damaged by radiation, causing a buildup of lymph fluid. It more commonly affects the arm, but can also cause swelling of the breast.

    Lymphedema can develop many months or even years after treatment has finished. While it is not curable, there are treatment modalities that provide relief, so if you experience this problem it's important to talk to your doctor to discuss your options.

    A few women develop a hardening or thickening of the breast tissue (fibrosis). This can cause the breast to become harder and smaller than it was. In severe cases this can make the radiated breast appear much different than the healthy breast.

    Some women find that as they get older or gain weight their breasts tend to become larger. A breast that has been treated with radiation may not increase in size as much as the untreated breast. When this is a problem women often use a partial prosthesis or correct the imbalance through surgery.

    Many women find that the area in the breast that has been treated remains uncomfortable or sensitive. This generally become less of a problem as time passes. Some women find help relieving the symptoms by wearing a support bra during the day with a soft bra or camisole at night.

    Restricted arm and shoulder movement
    It's fairly common for women who have radiotherapy to the area under the arm to experience some restriction in movement, especially if they've had surgery to their underarm area as well. This may make it difficult to carry heavy objects, perform other tasks that require lifting, or do certain types of exercise.

    Many women find relief through gentler exercise modalities like yoga. Yoga allows the practitioner to stretch while learning how to use the breath as both a calming influence and a means to increased flexibility.

    Massage therapy has also proven useful. Discussing the fact you've had radiation therapy and your limited range of motion is very important when you are looking for someone to help you either in terms of exercise or massage. You will want to make sure they are well-versed in helping women overcome these challenges. There are individuals who specialize or have had training specific to these needs.

    When the heart is affected
    When undergoing radiation treatments, there is a very small risk of damage to the heart muscle or the major blood vessels around the heart. This is a potential problem if you have had cancer in your left breast, since the heart is on the left side of the chest. Ideally, the heart is either not within the radiation area or only a small amount of the heart will receive any radiation, which helps to lower the risk of significant damage.

    If your heart has been damaged by radiotherapy you may find that you get tired very easily or get breathless on exertion, like climbing stairs. You may also notice that you sometimes feel dizzy or get chest pains. It's important to remember that these symptoms can be caused by many things and they aren't always a result of damage to the heart. You will want to immediately consult your doctor if you experience any symptoms that may be heart related. (More about your heart and breast cancer treatment.)

    A promising clinical trial is underway at the Johns Hopkins Avon Foundation Breast Center to determine if The Active Breath Control device will help to better protect women against heart-related side effects. The device provides an innovative way for the patient's heart to be spared radiation by controlling her breathing during the actual radiation treatment.

    Possible lung problems
    A small number of women develop symptoms such as breathlessness, a dry cough or chest pain. These symptoms may occur because the radiotherapy can damage the cells lining the lungs, causing inflammation or a hardening and thickening (fibrosis). The changes are usually temporary, lasting a month or two, but occasionally can become a long-term side effect. Your risk of developing lung problems is slightly higher if you've had lymph nodes radiated in your chest area and/or you've had chemotherapy.

    Talk to your doctor if you notice any lung problems. They may be able to give you inhalers to help open up the airways or steroids to reduce inflammation.

    If the bones are affected
    A rare late side effect of radiotherapy to the breast is damage to the bones, especially the ribs. The bones can become thinner and more brittle if you had certain chemotherapy drugs while undergoing radiation. If this happens, it can cause pain and make it hard for you to lift heavy objects or to exercise.

    It's important to be aware that this problem can happen, so that if you have any symptoms you can get them checked by your doctor.

    Hypothyroidism
    Hypothyroidism (abnormally low levels of thyroid hormone) is one of the more frequently encountered late complications of radiation therapy. Although it occurs most frequently when the neck has been radiated, it is important for patients who have received radiation therapy to be tested on a regular basis because signs and symptoms of hypothyroidism occur very late and are subtle. These may include:

    • Fatigue
    • Sluggishness
    • Increased sensitivity to cold
    • Consitpation
    • Pale, dry skin
    • A puffy face
    • Hoarse voice
    • An elevated blood cholesterol level
    • Unexplained weight gain
    • Muscle aches, tenderness and stiffness
    • Pain, stiffness or swelling in your joints
    • Muscle weakness
    • Heavier than normal menstrual periods
    • Brittle fingernails and hair
    • Depression
    • Numbness, pain and weakness in the arm

    About 1 in 100 women who have radiotherapy to the underarm will develop some numbness and tingling, weakness, and/or pain in the hand, shoulder or arm. The symptoms are due to damage to the nerves going into the arm. These nerves are known as the brachial plexus and the long-term side effect is often called radiation-induced brachial plexus neuropathy or brachial plexopathy.

    If severe brachial plexopathy develops it cannot be reversed. However, treatments can help to control symptoms making life a bit easier. Acupuncture, physical therapy, massage or applying heat and cold can help relieve symptoms.

    Using a TENS machine (transcutaneous electrical nerve stimulations) can be a very effective way to relieve pain. It involves placing sticky pads that contain electrodes onto your skin. A weak (painless) electrical current is passed through the pads. The electrical current can make the body release its own natural painkillers (endorphins), to help control pain.

    Radiation-induced second cancers
    According to a long-term study of more than 600,000 cancer survivors by U.S. National Cancer Institute researchers, an estimated eight percent of second cancers were attributable to radiation treatment for the original cancer.

    The area treated is important, since these cancers tend to develop in or near the area that was treated with radiation. Certain organs, such as the breast and thyroid, seem to be more likely to develop cancers after radiation than others.

    Some types of leukemia are by-products of radiation therapy, and the American Cancer Society estimates that the risk is at its highest five to nine years after the radiation treatment, and then slowly goes down. Other kinds of cancers that have been related to radiation tend to occur more than 10 years after treatment.

    With so many women receiving radiation therapy for the treatment of breast cancer, there's hope that more discussion will take place about its long term side effects; meanwhile, these individuals go on to lead long and otherwise healthy lives. If you, or someone you know, has something to add to this discussion, we would love to hear from you so this information can be shared. Email us at info@thebreastcaresite.com

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

    Runor, not trying to talk you out of it, just giving you and anyone else forewarning. I thought going in that whatever happened would be immediate and I could stop at that point. No one said anything about years down the line. In my case they couldn't find the primary tumor and I had one positive lymph node with 3mm. The after affects have added on another year for me SO FAR, it wasn't a "breeze", like some say. The reason I'm concerned is your problems have started already. Over and out.

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

    Yes KB870 it's way too many and 75 - 80% are ER PR positive. Thanks. 0ver 250000 will be diagnosed again this year

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2017

    Marijen - this sounds like an older article to me. For example:

    "A promising clinical trial is underway at the Johns Hopkins Avon Foundation Breast Center to determine if The Active Breath Control device will help to better protect women against heart-related side effects. The device provides an innovative way for the patient's heart to be spared radiation by controlling her breathing during the actual radiation treatment."

    Deep Inspiration Breath Hold is well-accepted and ever more widely available and is very effective in moving the heart out of the radiation field. In addition, many women's hearts are entirely outside the field even without it, as shown in the planning scans.

    Everyone has a right to express their own experience and views but when posting technical information is should be as accurate and up to date as possible.

    My own experience with RT wasn't quite as outstanding at Can3616 but it was a LOT better than what some of you are describing. I was very reluctant to do radiation (despite understanding its relationship to successful treatment with lumpectomy) but found the burns minimal and the side-effects manageable. And I had a lot - 35 rounds, 3 fields. Furthermore, the more I learned the more I understood the value of the treatment in my particular situation. I'm not glad that it needed to be a part of my life but I am glad that I did it.

    If I had read similar posts when planning treatment I would have been completely freaked out - probably unnecessarily. I truly hope later readers will understand that while all of these extremely unsatisfactory experiences are deeply disturbing they by no means represent the experiences of most women treated with radiation therapy today.

  • bareclaws
    bareclaws Member Posts: 345
    edited July 2017

    Hopeful, thank you for posting that. I see RO for first time in about ten days and I'm scared to death after reading all these terrible outcomes. Trying to stay calm....

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

    BCO itself has outdated information. I was providing a list for Runor. BCO also has an article that says approx 19% have recurrence after radiation. I suppose that depends on how aggressive the cancer is to begin with. Like KB says, bareclaw, it's not to scare, it's to inform. I'm not going to waste time trying to convince anyone. Just showing concern for Runor, who hasn't had much time to digest since he dx was recent and again, she is already having sides. Hmm I'll have a side of coleslaw instead. Don't shoot the messenger.

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

    Well Said Runor, and Marjen. I don't think the RO at SCCA even said one single word about side effects that I didn't drag out of her with questions. She downplayed EVERYTHING. She said the Breath Hold technique meant we would hardly get my heart. Call me crazy, but my heart is kind of IMPORTANT, heck, I will even go so far as to say it is CRUCIAL to my survival. I know that within a few months I noticed my heart acting weird, even saw a Cardiologist. They said nothing was wrong, but my exercise tolernce dropped, and never came completely back to normal, even now 4 years later. I am sure they actually got more of my heart than they said, just lulled me into a false sense of security with the that BreathHold bullsh*t. I know now that I should have said no.

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

    Bareclaws- Try to remember that most who are doing fine aren't on this board anymore. That goes for chemo, sx, hormonals... I had a lot of friends when I was starting on this path who were just a little ahead of me. Now I don't see them. Once in a blue while. People who stick around are either having problems, looking for info or are going through some part of this. Fact is for many of us, the risk of rad problem is less than the chances of recurrence. So you need to have an RO you trust and express your fears, and go over YOUR own path. Everyone is different. There are risks sure but is it worth risking the possibility of recurrence. That's the whole problem with all the txs we have whether chemo, rads, hormonals. They all have risks, some big, that suck but you need to weigh that against your own path. Hopefully you have a team you like, feel comfortable with, talks with you and cares. Good luck to everyone deciding ANY tx.

    While it's awful what's happened to OP I fear people are going to be scared right off the bat and not look into it for themselves, with their own path. I think if I saw this thread before rads I probably wouldn't have done it, and look at my stats. I am Ki67 75, have a lymph node involved, had 7 cm tumor, ER+ 95% PR+ 50%. It wasn't fun just like chemo wasn't but luckily I had a good team. Did it work? Who knows but someone like me or worse (and I mean purely going by #s here) to not throw the kitchen sink at it doesn't make sense. I have no medical conditions so that too made it easier to decide.

    So my advice is to weigh YOUR situation individually and don't just be scared about ANY tx because of some bad experiences with this or that. Take it ALL in and decide. I know age plays a difference too. My 72 y/o mom had lumpectomy and rads and is trying AI. She's DCIS and had 2.5 cm tumor. Hopefully it worked. Hopefully whatever we do or don't do works. Maybe some day we'll have more definitive answers and better txs but I'm not holding my breath that it will be in my time.

    Best wishes to everyone trying to decide. It's hard and awful, I know.

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

    I am writing this from the lodge I am staying at during radiation. I have had 4 treatments of 16.

    I did show up at the clinic and refuse to take one more treatment until I saw the doctor. A nurse examine me and said that the redness, heat and swelling could not possibly be from radiation. It was too soon ( 3 treatments at that point). I don't care what she said. My boob was fine before the radiation treatment and now, after the fourth, the redness is epic!

    I asked my doctor what my risk was if I didn't take radiation. She sort of shrugged and said local recurrence was around 20%, give or take. Then she said for every 4 recurrences they prevent, they save one life. Now call me stupid, but I am not sure what that sentence is trying to say. That they will nuke 4 women so one of them does not die? Is this a good idea for the three that were at very low risk? Were they in fact low risk? She did say that Oncotype scores tell us chemo information but do not translate across to be much help in the radiation department.I left feeling unsatisfied. Sort of feel like drive-thru medicine. I've been supersized.

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

    Congratulations Runor, you already know more than they do. Tell me is your other boob red, swelling, and hot. I doubt it. I think you've got her stats right. 1 out of 4 recurrences, go on living. But sounds like her stats are dumbed down and she doesn't know much about it. Please keep us updated. There are others here that are better at determining risks. There is a recurrence topic here somewhere.

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