Wish I had never,never done rads, DEEP REGRETS

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  • chestvik
    chestvik Member Posts: 1
    edited April 2019

    Thank you I Spy for your posting.....I am new here and when I had questions my doctor said , "I hope you DON'tT

    decide Not to have radiation.....I am over 70 and have been researching people over 70 may be being OVER TREATED and may not "need" radiation.....so I am "trying" to decide NOT to have it.....I am doing a pro and con list.....can't say I can even come up with one PRO reason on my list Hope I am making some sense here....

  • keywestfan
    keywestfan Member Posts: 338
    edited April 2019

    Met RO for first time today. A big surprise. He said margins were clean after re-excision, but that, as I knew from path report, there were 3mm of residual ductal ca 2 cm from the margin and some LVI about 1 cm from inferior margin. The surprise was (and I don't know whether this was age related or not) he said I had a choice- I could go straight to the AI( 30% of women stop taking it,according to MO's, RO has talked with) or could do rads. We talked for over an hour. He said if I was the kind of person who would worry I hadn't done everything I could and would regret then I should do rads and sleep more easily. If, I woudn't worry excessively, I could go straight to the AI because with clean margins I was cancer free and the pill might very well kill off any rogue cells.I asked about hypofractionated and he said that's what he would do- 16 sessions to the tumor bed. I said I'd heard that maybe if there was a recurrence after the hypofractionated another lumpectomy and radiation could be done. His answer was why do radiation again if it failed the first time. Just do the lumpectomy..I told him every fear I had about rads and he listened very respectfully, predicted there would be very little skin effect, not much fatigue.. So,with this maybe soft sell, I got set up in the simulator and we start tx on April 30 for 16 days.. Now, of course, being me, it's sort of like buyers remorse, and I ask myself, did I make the right decision? DH and son say yes, but they're not getting all those grays and x rays shot into them..

  • cassiecanada
    cassiecanada Member Posts: 166
    edited April 2019

    hey keywestfen- an hour? what service!
    seems like a caring and knowledgeable
    md. I, too, had set up today with path
    stats like yours. WBI , after pondering
    and mulling for weeks, was best choice.
    If i cant tolerate the femara, at least
    i provided some protection by doing
    the rads. I think you made the right choice.
    Hormone therapy is no walk in the park.
    If you happened to struggle with se, theres
    no going back - if you hadnt done rads
    you’d be almost resigned to putting
    up with the se of hormone therapy.
    I understand that this applies to a subset
    of women in a low risk category,age etc.
    Personally, I decided on rad mainly
    because the risks seemed less than
    the risks of femara
  • sdianel
    sdianel Member Posts: 49
    edited April 2019
  • macb04
    macb04 Member Posts: 1,433
    edited May 2019

    I still have this weird painful lump in my back, started when I was burnt straight through to my back. Massage therapists are always perplexed by the knot, scar tissue?

    Not surprised to see an article about fractures of ribs. Creepy.

  • sdianel
    sdianel Member Posts: 49
    edited May 2019

    cassiecanada: I am also on hormone therapy Arimidex (Anastrazole). It is making my bones ache. I feel like I'm 100 years old. I'm 70. I only started it last month because of other medical issues. I told the Oncologist that I couldn't tolerate the AI until I got over all the other intestinal problems. I'm going to try it as long as I can. I started CBD in January and I believe it's helping the inflammation and bone pain. So I'm going to do my part. I do NOT want the cancer to come back. Although they caught mine early and the tumor was very small, they only removed the sentinel lymph node, I am determined to do everything in my power to prevent it from coming back. I had such terrible side effects from the radiation I do not want to have to go through that again.

  • sdianel
    sdianel Member Posts: 49
    edited May 2019

    update on my radiation nightmare. I had radiation in May 2017. Had the 5 day accelerated 2x a day. 2 weeks later the skin on my breast fell off. The RO said 'he never sees this" and didn't seem to know what to do. I eventually asked for another RO. It was excruciatingly painful! Took about 6 weeks to heal. Changing bandage 2x a day putting Silvadene ointment on it. Couldn't wear clothes. Couldn't sleep at night due to pain. Taking a shower was horrible! They did finally agree to give me pain pills during that time. Later that year, In October 2017 I got severe pain in my right side. I had not done anything to hurt myself. Went to the RO and she said it was "referred" pain from my breast which was still extremely red, swollen and sore. I disagreed with her and said so. I said the pain in my breast was sore. The pain in my ribs was stabbing and excruciating. At that time she stated that she NEVER recommends the accelerated radiation because of all the side effects. She didn't do anything about my rib pain. No x-ray, no pain meds. Nothing. I was in terrible pain for at least 6 weeks. I had to hold a travel pillow against my right side to be able to move around. I just laid in bed and cried. Note that I had a CT scan in 2017 right before my radiation for diverticulitis. No evidence of any other problems except a dilated liver bile duct. Fast forward to this year 2019 - recently had a CT scan for a kidney problem. The report showed SEVERAL HEALED BROKEN RIBS. I did some research and found that rib problems (costochondritis) and broken ribs is a fairly common side effect of radiation. I was livid!! I sent an email to Patient Relations at the Cancer Center. The 2 RO's were either incompetent or lying. Either one is unacceptable. I would never have radiation again knowing what I know now. I also would never tell anyone NOT to have it. It's a personal decision. Most women don't have side effects or minimal side effects. Just do your research. Look up side effects and know that older women, women with large breasts, diabetics or borderline diabetics, or obesity, among other categories should really consider at least not having the accelerated radiation. At least you will make the decision with all the facts. Do not allow the RO's to bully you and tell you nothing is wrong. I should have insisted on a chest x-ray. Also important to note that the other depts in the Cancer Center were excellent. Praying for everyone who has to go through this.

  • macb04
    macb04 Member Posts: 1,433
    edited May 2019

    sdaniel, that is so awful. I at least was able to convince the loser RO to give me narcotics right away because I was in horrible pain. Those evil bastards left you to suffer. What goes around, comes around.

  • macb04
    macb04 Member Posts: 1,433
    edited May 2019
  • macb04
    macb04 Member Posts: 1,433
    edited May 2019

    Are your ribs and pain doing any better sdaniel.? I get very upset to hear how few of us are given the true info, and to add insult to injury, our side effects are dismissed.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    SOME (not all) negative radiation outcomes may be lessened with proton radiation. I still had the skin issues but there is no "exit" dose so it protects the shoulder/brachial plexus. I got proton rads..... part of the reason I did was this thread! So thank you!!!!

  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    Good to hear Santabarbarian, that you benefited from sharing the miserable experience.

    I certainly had a whopping "exit dose", that I wasn't warned about at all. I was burnt at SCCA in Seattle straight through to my back. I have a weird, painful lump there in my back ever since.

  • sdianel
    sdianel Member Posts: 49
    edited June 2019

    macb04 - yes they are doing better. I had a terrible 18 months from May 2017 to December 2018. I went from breast agony from radiation to rib pain from several broken ribs in Oct 2018 and as soon as the ribs healed (6-8 weeks) I got sciatica in my back for 6-8 weeks. I believe it was related to the inflammation but can't be certain. I was complaining so much that the Oncologist sent me to physical therapy at the cancer center (some doctors didn't even know they had a physical therapy dept that specialized in lymphedema!) When I went the first time I was in such pain in my ribs that they therapist called the doctor and demanded she prescribe pain meds so I could get through the therapy. During the 2nd and 3rd visits, I developed sciatica and had to cancel the next visit for lymphedema. The wonderful therapist offered to make an appointment with another therapist there who specialized in back pain. I didn't even realize I could go there for that. She went and made me an appointment. After 2 appointments for my back I began to get relief. She gave me exercises I could do at home. I don't know how I got through Thanksgiving but I helped with dinner in excruciating pain. At Christmas, my sister gave me a CD of Alan Jackson's Gospel music called Precious Memories. A few days after Christmas I was listening to it and was at the lowest point in my life. I had been in pain for 18 months and was so depressed. As I listened to the music I sobbed. Then I prayed that God would help me get better by New Year's Day (about a week away). Prayers work. On New Year's Day I cooked dinner by myself and I started walking. At first I could only walk 2 blocks. I had to stop every few steps to straighten my body because I was so weak. Gradually I added a few more steps each day and worked up to 6 blocks (12 total) in a few weeks. Then I started taking CBD for inflammation. It has helped so much with inflammation and arthritis pain and I'm sleeping much better. Thanks so much for your advice and support along the way. I think it was you that recommended Pentoxifylline & Vitamin A (which the RO did prescribe, the lymphedema pad for my bra, (I was wearing it wrong and the physical therapist explained how to properly place it) and finding a physical therapist that specialized in lymphedema enabled me to get through all the other issues. Now I'm on Arimidex and having some side effects from that but am handling them OK. My bones ache and my hair is falling out but I'm trying not to complain. The CBD is helping the bone pain. I switched the Arimidex to before bed so I don't notice the side effects as much. The Oncologist said get some hair & nail vitamins for my thinning hair. Going to search this site for more help with that. I feel so guilty for complaining when I read other posts. Thanks for your support. God Bless.

  • sdianel
    sdianel Member Posts: 49
    edited June 2019

    PS: one more thing to note about broken ribs. There are tens of thousands of women who have had broken ribs from breast cancer radiation. I found that info in about 5 minutes by searching for it. One woman had several broken ribs that they found in an x-ray, and then 2 years later was bending over to tie her shoes and another one broke. She felt it when it snapped. So I will have to be extra careful. I'm posting this not to complain, but to let others know in case they have rib pain to demand an xray or scan to see if they have chondritis or broken ribs. I don't know if the RO's are incompetent or lying but either one is not acceptable. Just tell us the truth and we will make the decision that is best for us. Hugs!

  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    ARG!!!, thousand of women with spontaneous fractures following radiation! WTH!

    Can you imagine, just bending over, and feeling your rib "SNAP" like a matchstick?

    Do any of you remember seeing that nifty little factoid mentioned in the consents you signed?

    I never saw anything about that. The RO's have NO RIGHT to WITHHOLD crucial information from us.

  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited June 2019

    When I was first dx'd and I met my BC "team" (Nurse navigator, BS, MO, & RO) for the first time, the RO only told me what the treatment schedule would be. She never said anything about SEs. I was still shell-shocked from the dx and didn't have any questions prepared. But my husband was with me and he asked if radiation would weaken my bones. She acknowledged that radiation would weaken the bones near the radiated area and that they would be more prone to breakage. She didn't mention any other SEs.

    I decided on a UMX and was able to avoid radiation. I hope other ROs are more upfront. (A technician who did one of my echo-cardiograms told me that she has seen women with heart problems years after having radiation on the left breast. When I told her that I was getting a UMX and hoped to avoid radiation, she thought that was a good choice.)

  • Betrayal
    Betrayal Member Posts: 1,374
    edited June 2019

    SE of radiation were downplayed when I met with RO in 2016 and on permit I signed. I had left sided BC and was told that "breath holding technique" would minimize effects on heart but was not told that lung, skin and nipple would be collateral damage. So now I have fibrotic tissue changes to breast that preclude any possibility of reconstruction (unless I have a mastectomy), nipple that due to 9 boosts hasn't been in correct position for 3 years (can't be seen when you look at my chest because it is so tucked under), had axillary cording (LE PT left finger prints in my axilla when she popped them) and have breast lymphedema that RO blamed on surgeon (BS in turn blamed RO). I only had one lymph node removed so don't let anyone tell you that lymphedema only happens when you have multiple nodes removed. It is a lie!

    Extra boosts necessitated by < 2mm margins for DCIS was never explained until 11/18. If I knew then what I know now, perhaps I would not have elected to have radiation and would have elected to have a mastectomy than have ongoing problems related to 34 radiation treatments that I found traumatizing. Techs were kind but not the Oncology RN and I hated every minute I spent there. Felt having to expose my breast was humiliating and had to put in writing that no observers could be there. Yes, I was asked if I would permit students and reps to be present during treatments. And for this I was paying for treatments via insurance? Finally refused to let them use photos taken during treatment since they were advertised as a "teaching tool" and could be used in RO's publications.

    Cannot buy bras that fit since each breast is a different size with left smaller than right except when LE is present. Need to wear one with light padding since there is no nipple evident on left; looks weird to only have one head light in a t-shirt.

    Was actually referred to PS by RO who told me damage was too severe to consider reconstruction without mastectomy and skin condition would be an issue even with that since healing would be dicey. I was advised to wait 18 months before seeing PS so I felt like I was lied to for that entire time. RO kept reassuring me that it was possible and provided false hope. I am still taking pentoxyfylline and vitamin E to undo skin damage.

    So make sure you ask the pointed questions from the first visit with the RO. I feel like the money made on my radiation treatments was the incentive for the false hope and lies. There was nothing on my permit that mentioned the side effects I have described here. RO makes light of SE as well. RO's need to be honest and acknowledge as well as identify the SE that we can encounter. It is called truth in advertising.

  • Betrayal
    Betrayal Member Posts: 1,374
    edited June 2019

    SE of radiation were downplayed when I met with RO in 2016 and on permit I signed. I had left sided BC and was told that "breath holding technique" would minimize effects on heart but was not told that lung, skin and nipple would be collateral damage. So now I have fibrotic tissue changes to breast that preclude any possibility of reconstruction (unless I have a mastectomy), nipple that due to 9 boosts hasn't been in correct position for 3 years (can't be seen when you look at my chest because it is so tucked under), had axillary cording (LE PT left finger prints in my axilla when she popped them) and have breast lymphedema that RO blamed on surgeon (he in turn blamed RO). I only had one lymph node removed so don't let anyone tell you that lymphedema only happens when you have multiple nodes removed. It is a lie!

    Extra boosts necessitated by < 2mm margins for DCIS was never explained until 11/18. If I knew then what I know now, perhaps I would not have elected to have radiation and would have elected to have a mastectomy than have ongoing problems related to 34 radiation treatments that I found traumatizing. Techs were kind but not the Oncology RN and I hated every minute I spent there. Felt having to expose my breast was humiliating and had to put in writing that no observers could be there. Yes, I was asked if I would permit students and reps to be present during treatments. And for this I was paying for treatments via insurance? Finally refused to let them use photos taken during treatment since they were advertised as a "teaching tool" and could be used in RO's publications.

    Cannot buy bras that fit since each breast is a different size with left smaller than right except when LE is present. Need to wear one with light padding since there is no nipple evident on left; looks weird to only have one head light in a t-shirt.

    Was actually referred to PS by RO who told me damage was too severe to consider reconstruction without mastectomy and skin condition would be an issue even with that since healing would be dicey. I was advised to wait 18 months before seeing PS so I felt like I was lied to for that entire time. RO kept reassuring me that it was possible and provided false hope. I am still taking pentoxyfylline and vitamin E to undo skin damage.

    So make sure you ask the pointed questions from the first visit with the RO. I feel like the money made on my radiation treatments was the incentive for the false hope and lies. There was nothing on my permit that mentioned the side effects I have described here. RO makes light of SE as well.

  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    Oh Betrayal, I am saddened to hear your story. The level of deceit by the bc industry is staggering

    Despite the rads fibrosis I still managed to get sort of normal looking implant reconstruction done. I am also on Pentoxifylline and Vitamin E. I had Hyperbaric Oxygen Therapy (HBOT), Plus Fat Grafting prior to the TE and then an implant. I had 15 Reconstruction Surgeries. Huge infections where I had a coffee cups worth of pus taken off my chest, ....twice. So if you are up to trying my tough path, then you can still potentially get some kind of reconstruction. I have learned some really helpful info for reconstruction, despite radiation damage, for anyone who wants the real breakdown of how I finally suceeded. Anyone with questions can PM me.

    All of my savings were used up. Insurance didn't really cover everything. One year, I itemized all of my medical expenses, and it came to over $13,000 spent out of pocket. That was just that one year. I had multiple surgeries every year from 2012 to 2016.

    The joke on me was that even with itemizing, I still was not able to claim all that lost money back.


    That I had much more problems with healing due to rads damage is the understatement of the century. The oncologists said, do rads, it won't affect reconstruction. HA, HA, HA. They just lie, and lie.

  • sdianel
    sdianel Member Posts: 49
    edited June 2019

    Betrayal: I too have lymphedema from one lymph node removal. I also have one breast way larger than the other and my bras don't fit. I have fibrosis. I stopped the pentoxifylline and vitamin E after 4 months. They said I should be on it longer than that. I begged the surgeon to do a mastectomy so I didn't have to have radiation. He said I would not be happy with it because I have large breasts. He basically talked me out of it. I would have been much happier with that than with all I have been through. I told him as much during my last follow up!! I guess I am "lucky" that it was my right breast so I don't have heart problems. The broken ribs was the last straw! The RO wouldn't listen to me and said my rib pain was "referred pain" from my breast and that she was NOT going to give me pain meds! I said I didn't want any pain meds! I wanted to know what was WRONG!! I argued with her and said it was 2 different pain types. My breast was sore. The rib pain was extreme and "stabbing" like a knife. She still didn't send me for an xray or CT scan! Looking back I should have demanded one. I was in such pain and was so emotional at that point I just caved. Good thing my daughter was with me. She heard everything. The more I think about all that happened to me, the more I'm convinced that both RO's were lying to me. One said he never sees anyone with the skin falling off after radiation The other said that's why she doesn't recommend the accelerated radiation. I am afraid to have anything done to my breast because I'm afraid that it won't heal. The skin is still so paper thin and fragile I have to be careful when I shower. It's been over 2 years. Thank God for this forum. I appreciate all the support here.

  • macb04
    macb04 Member Posts: 1,433
    edited July 2019

    sdaniel, what is WRONG with that doctor?!!! They should never have ignored your pain. They were being guilty and reactive, rather than acting like they had your best interests at heart.

    What absolute BS, to say they never saw "skin falling off" It probably happens every single day. It happened to me. I had bleeding sores all over my chest. I couldn't even sucessfully keep bandages on them, it was such a huge area of my chest. The Telfa would move, then the sore would stick to my shirt. Then when I moved, the blood would run down my chest. I couldn't get it to heal for days, and days. The pain was unreal, I had to take narcotics for like a month or I didn't have a prayer of sleeping. The rad techs would draw on the open sores with a magic marker.

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2019

    I had 33 radiation treatments. I was one of the lucky ones because I didn’t have unmanageable side effects. A little burning and fatigue halfway through the treatments was all I had to deal with. I know others who have suffered debilitating side effects to the point they had to quit the treatments.

    One complaint though seems to be the same with all of us and that is no one bothered to enlighten us as to what the side effects could be both short and long term. To be fair I should have researched it more instead of just relying on what the doctor said. We have to be our own advocates. I was just fortunate.

    Since my treatments I had to have a chest X-ray for something else and it showed lung nodules everywhere. Luckily it’s scar tissue and the radiologist said my X-ray was normal.

    I resent doctors dismissing our complaints. They aren’t going through it. We are. Maybe if they did or someone they loved did they wouldn’t be so indifferent.

    Diane

  • Togethertolearn
    Togethertolearn Member Posts: 278
    edited July 2019

    Macb04 Did you have a mastectomy or lumpectomy? Wondering if that makes adifference. As well, how long after surgery did this radiation start? I’ve been going to two different hospitals and keep getting different answers, such as how long to wait after surgery . This seems so confusing and with horrific outcomes sometimes! I’m so sorry for you!

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited July 2019

    I am on pentoxifylline and I was thinking of stopping early but i guess I'll do the whole 6 months....

    I was very enflamed by #33. But I have healed really well. What does fibrosis feel like?

  • macb04
    macb04 Member Posts: 1,433
    edited July 2019

    uni mx. Rads around 6 months later. I had 25 or so "sessions of torment". I actually refused the last 8 "treatments "

    First 10 not that bad, but then I started burning through to my back. I was getting internal mammary glands fried. They didn't tell me they were doing my Thyroid and my neck. I woke up one weekend barely able to swallow. Felt like I was drowning in my own saliva, almost went to the ER. My throat was swollen for DAYS. When I went back on Monday and saw the idiot RO, (C Fang of scca) she said, and I quote " We didn't expect that ( swollen throat, difficulty swallowing) yet" What The F*CK,!!!

    The level of callous disregard was shocking then, still shocking now.

    Wonder if the Mods will erase this posting, they sometimes do that. Anyone else notice the Censorship? I think they don't want any negative comments against the bc industry.

  • marijen
    marijen Member Posts: 3,731
    edited July 2019

    I had the same problem, the worst sore throat of my life. It went on for weeks. But the techs and the RO were not surprised at all. Had to stop radiation for a long weekend, needed a breather from the burning pain. In the end I felt that I had been. “Overdone". Medium well done!


  • Togethertolearn
    Togethertolearn Member Posts: 278
    edited July 2019

    How could they radiate your thyroid without your given consent?! Your experience is just awful! Are you in a better medical facility yet? Are you going to get another opinion? Did they not have you meet weekly with the actual radiation doctor? I’m so confused about how this could happen. But more so hoping you get the appropriate and needed treatment you deserve. Good for you for standing up against this!

  • marijen
    marijen Member Posts: 3,731
    edited July 2019

    I have hot thyroid nodules and lung fibrosis from radiation. I was told my thyroid wouldn’t get radiation.

  • macb04
    macb04 Member Posts: 1,433
    edited July 2019

    The RO never said she was frying my Thyroid. Not one single word. That's scca for you. 😆😆😆World class care.

    I don't go back to any of them. I had enough. They had their chance to convince me they gave a crap about my health.They broke trust with me over, and over. I know some of you had docs you liked, but they blew it, they really did.

    I trust all bc industry md's about as far as I can throw a 747.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited July 2019

    I did proton rads in large pat because I have been scared about the possible damage to healthy tissues. My breast was friend in proton rads too but it was only my breast and the rest of my tissues are fine. I am on pentoxifylline for 6 months for fibrosis prevention, as my breast got very enflamed by the end of rads. Everything seems to be healing well and I feel only a residual tightness in armpit at incision site.

    Check into protons if you are facing rads. I was very happy w my experience overall though it was still difficult at the end.

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