How to deal with my emotions during radiation treatments
I am 67 and after a having a lumpectomy I am about to begin daily radiation for 4 weeks. My CT mapping and simulation days have made me feel violated, humiliated and like a side of beef. I've been feeling very exposed and weepy all weekend. Does anyone else feel like this? What can I do so I can get through the next 4 weeks? What has helped you?
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Does it help at all that the treatments themselves are way faster? You really barely get on the table and positioned and then they go out of the room, you get instructions by speaker and it's over quickly.
I'd also invite you to think about this in terms of its curative properties. This is an incredible opportunity to access potentially life saving health care that's denied to many around the world and throughout history. Every time that machines around me zoom around and make pinging noises etc I do think about all the inventors, scientists, engineers, physicists, chemists, physicians, biologists who are making all this happen & feel so grateful.
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Activewoman, I am copying a post I made on another thread at another time, in response to a similar question.
I would like to say that though the procedures may be normal procedures, they are not normal for you! The techs need to remember this. It's all in a day's work for them, but not for you. And though some patients are not bothered by the procedures, some are, and your feelings should be respected. You have a right to know ahead of time what is planned, to ask questions, and to get an explanation of why something will be done. This is called INFORMED CONSENT. And you have a right to be treated with dignity and made as comfortable as possible. I encourage you to discuss this with the physician in charge, the radiation oncologist, whom you probably will see once a week. The RO needs to train his/her staff better or to know if they are not treating patients as they ought.
If having only female techs would help you, ask the RO to arrange that.
The thread was Dignity during treatment
https://community.breastcancer.org/forum/70/topics/875881?page=1#post_5530675
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I agree with moth.....I too felt grateful to live in a country with excellent health care.
Focus on the great treatment you are receiving. You will be fine!!!
Best wishes..
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I felt the exact same way about radiation. I cried almost every day on the table (which always took longer for me for various reasons). It was such a horrible experience for me. While I was grateful for the care, it didn't at all help me deal with my feelings of being violated and humiliated and incredibly vulnerable. It also didn't get any easier as the weeks went on. I cried a whole lot during my month of radiation and was so relieved when it ended. The whole experience was just awful.
Edit: I'm sorry I don't have suggestions to help you but just know you aren't alone in your feelings and they valid. I will be thinking about you and do hope that you find it gets easier as time goes on. Also remember, it does end! Treat yourself to something special either once a week or at the end...or both...it will give you something to look forward to.
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Hi. Sending my best wishes to you for a fast treatment. You will feel much better when it’s all over. I focused on that countdown-instead of ringing that bell I would have thrown it out the window!
My first simulation failed so got mapped again and was treated in the prone position. This was just a bit more work for the machine yet in and out. Other techs asked to come in as they had not seen anyone being treated that way. I was treated at the hospital that was treating patients with every type of cancer. It was very chaotic, lots of waiting, a couple of schedule time screw ups. As I got going I made a few friends in the waiting room. One was an elderly man with lung cancer just getting out of chemo. I let him go ahead of me a few times. A lady with bladder cancer which required her bladder being full for treatment. So if it was a long wait on a day I would let her go ahead of me as well. A breast cancer patient feeling just as you, in tears and felt like a number. I tried to assure her it will get better
Among what I thought was a circus, the techs and RO were professional and I had excellent care.
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The first time around, with each pass, I’d say die cancer die. I did not have your feelings either time for rads. But do remember you have already been through a lot. Emotional and physical. This is the light at the end of the tunnel. Speak with your RO. After mapping, the actual zap time is very short. You can do it.
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Thank you ShetlandPony and cm2020 for your helpful words to make me realize that I am not the only one with this reaction. While I am grateful that my cancer was caught so early and I live in a city and at a time when such advanced medical care is available to me, I was caught by surprise by my depth of emotions. I will try to focus on positive aspects of my treatment, but if I cry, I cry. I thought my doctors and support staff have been pretty empathetic, but from reading the many posts on this site, I see that they have fallen short in some areas, and I will speak up in the future. For example, I was told I have to have tattoos, no choice. I was very opposed to them for religious reasons but now I have them. I will definitely seek to have them removed when my treatment is finished. Perhaps this is what triggered my emotional distress. I am very grateful to have found breastcancer.org and for its supportive community.
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I do want to say I validate your emotions and you are not alone since they reflect what I felt during radiation. So I second what cm2020 had to say. I encourage you to ask questions especially about "collateral damage" which occurs during treatment because it is important for you to have the truth about the outcome. I did not see my RO every week which I had been told initially I would. In 6 weeks of treatment I saw her maybe 4 times. The RO was not always truthful in what she disclosed and this altered my relationship with her. I did speak to two of the behind the scenes people: the physicist and another member of the team that explained in detail mapping, etc. which I found to be helpful. The nurse was like Nurse Ratched but she did get me gowns that resembled bathrobes rather than those very short blue ones. The blue ones were doing a job on my tender skin. I told them I did not want students or male techs to participate in my treatments and they did honor that. I never did ring the bell because I did not want the sound of a bell ringing to trigger the PTSD I was experiencing from the radiation treatment.
Yes, the positive was the dying of those cancer cells that might have been lingering. Your tattoos will fade over time as mine have. I found crossing off the days until I was finished gave me a sense of control.
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Activewoman, my "tatoos" were tiny red dots--emphasis on the were as they are no longer visible. They have worn off all on their own. I had to ask for them because I was so stressed about not washing off the big black marks they were using otherwise, especially with showering daily to have clean skin for the treatment. Also did not want the black to rub off into my clothes. Hoping your experience goes smoothly from here on. And feel free to cry when you need to!
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Thank you all so much for your comments. I cannot express how much better it has already made me feel today. Tomorrow is day 1 for my treatments and when I see my RO on Tuesday I will address my issues and ask additional questions. And take deep breaths.
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ActiveWoman - Shetland posted great comments. It is a nightmare even when things turm out ok in the end. Ask for a warm blanket, even if they promise to move you out quickly. Stay hydrated and as active as you can. Mild fatigue was the biggest SE for me. Once while making a 2 1/2 hour drive, I had to pull over in a wide spot, and rest for a while. After my last radiation treatment, I liberated the gowns that the facility provided and took it to book group that night. Everyone wrote well wishes on the gown. Then one person burned/smudged the sage she had brought, then we burned the gown in a fire pit. The ceramony felt great. Afterwards, we socialized, then talked about the book.
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BlueGirl - I LOVE it. 'liberated the gown'. And I think your ceremony sounds so positive.
It took me longer to drive to the facility & get changed than the entire 'zap' procedure. Like BlueGirl - my only SE was fatigue, although that did get more pronounced as the 5 weeks went on. Nap when you can.
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Try to keep in mind that it's the CANCER that violated you and is the enemy. The radiologist, technicians and the machines are part of your army to fight it, and they are on YOUR side.
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Ive had radiation 2 times and had the emotion of "burn baby burn". I would hear that song in my head with each treatment.Sometimes I feel I was in denial but I never was upset or emotional as I felt I was burning the cancer out of my breast. I am a 13 year survivor of my first cancer and a 6 month survivor of the second and I feel blessed to be hear. I have been lucky/blessed twice. I am not a person who gets hyper about any diagnosis. It is what it is and I thoroughly reasearch and am totally involved with each diagnosis and work though it. I know it is not the same for other andI am sorry about your anxiety. God bless all of you through this awful process.
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Hi Activewoman. For me, it was ditto re what CM2020 said above. I absolutely hated it and cried often. It doesn't mean that you are not glad that there is some form of treatment that might help. Lying on your back and being exposed in that way just triggers a natural vulnerability and fear. I think they should try harder to make people more comfortable. I did manage to have them keep me covered at all times, except for the very short zapping time. I had asked the dr and she had them do that, but I always felt like I was a bit of a pain to them for that reason. It is just another day for them and they really don't connect to the feelings. I've read elsewhere on this forum that many don't care at all and it doesn't bother them. They say they have a "you just do what you have to do" sort of attitude or "who cares who sees me", etc., but I just didn't feel that way at all. It's more than just people seeing you too, it's that "on your back and exposed" vulnerability. I felt like an upside down bug you see on the sidewalk - vulnerable to all sorts of things and very scared. It didn't matter to me whether it was men or women. I know some talk about always having or wanting women to do these things, but to me it's the person, individually, not the gender per se. There are a whole lot of women I don't want sticking their hands all over me and seeing me either.
You will get through it though, and you will be so, so happy when it's over! I also didn't get into the ringing the bell thing at all. For me personally, it was sort of dumb and I didn't want to be focused on at the little ceremony or anything, so I chose not to participate in the thing. On the other hand, I know it means a whole lot to many and I do respect that. One of the other women I befriended in the waiting room asked me to please come to her "graduation", meet her family, and be there for her to ring the bell, and I was happy to go for her and very happy for her that she got so much out of it.
Good, good luck to you. It will just be hindsight one day and it will be sooner than you think.
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To all who have posted here to help me deal with my anxiety, I want to update you to say that I arrived at my first treatment and nicely but firmly told the radiation therapist about my horrible experience at the simulation. I asked her a long list of questions and made it clear that I want to be told in advance about anything different that was going to be done to me. First, she was very sincerely apologetic (even though she herself had not been present at the simulation) for what had happened and said that it should have been totoally avoided. She answered my questions in detail, promised to inform the other therapists fully so there would be no repeat of the bad experience I had, and so far (after 5 treatments) everyone has been keeping to their promise. They also urged me to speak up if anything during a treatment session upsets me, so they can address it immediately.
On Tuesday when I saw my RO and the team lead nurse, I repeated the story and received apologies and concern. They all made me feel better and I am getting more comfortable with treatment each day. I continue to feel extra sensitive in the breat being radiated but I assume it is due to the lumpectomy surgery, even though that was more than 2 months ago. I've also been feeling very tired, but it's probably due to accumulated lack of sleep since I have only started radiation this week. I will ask my RO on Tuesday when I meet with her again. Thank you all for supporting me and giving me the ammunition to address my fears. I am aware that I can see a counselor to deal with my anxiety and stress regarding my diagnosis and treatment at any time, but right now I think I can handle the daily routine.
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Activewoman so glad to read your update. It sounds like you were able to reclaim that feeling of safety and security and you were a strong advocate for yourself.
I did take advantage of counseling through my care team; I didn't start seeing her until after radiation was complete, partly because as you say you've got the daily routine handled. I couldn't have started sooner myself. It's been very helpful as I'm a survivor of early childhood sexual assault with pretty bad PTSD.
Re the fatigue. That one was the one that nearly undid me. My dad (a retired MD) had warned me that I might have a lot of fatigue and I blew him off. He was right, I didn't start feeling my normal Energizer Bunny self for another five months. I am not saying that to say you will have the same experience, just offering another data point.
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Thanks edj3 for the insight into fatigue. I sure hope it doesn't last for many months, but it will be what it will be. I will keep up my exercise and other activities as much as I can. It's not as though I can travel anywhere in this pandemic year anyway. When I'm done with radiation I'll be on tamoxifen so that will be another adventure.
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Exactly--I realized pretty quickly with that fatigue that it didn't matter if I ran or didn't run. I was going to be out of gas anyway so I might as well run. I ran all the way through radiation and last year went on to get several first place age group finishes in some 10Ks. Take that, stupid cancer and radiation and all the rest of it.
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Edj3, I noticed that you tried tamoxifen and stopped taking it. May I ask your reason you stopped taking it? Did you experience substantial side effects? I'm scheduled to begin taking it in 4 weeks and I am hesitant, but the AI therapy side effects seem even more risky for me.
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Hi Activewoman,
I'm an avid runner, have been for years and found that my heart rate spiked to dangerous levels within 30 to 60 seconds of starting a run (like 180+ bpm). I've tracked my heart rate for years and that's not normal for me. The only thing that had changed was me taking tamoxifen--I ran the week after my lumpectomy and all through radiation w/ no heart rate issues so that was pretty much the end of tamoxifen for me.
My MO recommended tamoxifen for me rather than an AI because I have mild osteoporosis--I fractured my pelvis from running. I had my reservations regarding side effects but decided I would at least give it a try. For me, this is the right decision and should I have a recurrance, I won't beat myself up for not taking it.
Good luck as you wrap up radiation and then make your own decision re tamoxifen.
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Thanks edj3 for your response. It was very helpful. I also do strenuous cardio exercise regularly and I will be sure to see if tamoxifen affects my heart rate. Same reason as you why I won't take an AI.
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Activewoman, I understand. I asked not to get the tattoos but they said I had to. I haven't gotten around to getting them removed, some places will remove them for free for survivors. I checked into it and the website said I had to get the RO's permission, and that lady was good, but I don't want to have to ask for permission. Anyway, I actually took a half of an anxiety med 30 minutes before rads and that helped me for the first couple of days. I used that time in the rad chamber to pray and imagine those beams were healing light. it really is terrible for some of us, I really did not want to be radiated, who does? But, I did it. I did ring the bell, but I was very emotional about it. Still glad I did it though.
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Thanks for your response. I will see about having the tattoos removed a few months after radiation is finished. At this point I have 5 more treatment sessions and I count each day as one less day of I dignity to go. I close my eyes as soon as Iay down and try to calm my breathing and count each time I have to hold my breath so I know when it's over. I'm really looking forward to not seeing any of the radiation therapists ever again. I have realized that they just have an awful job to do, with different patients every 15 minutes, none of whom want to be there. Starting next Tuesday I will be free to heal without further radiation damage being done to my body, and I will feel as though I have my life back.
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Activewoman, I am brand new here and I had to sign up so I could reply to your post as what you said described me exactly! I am so glad you are almost done with radiation and can put it behind you. I finished the end of May 2020. I had the same experience with my setup appointment, it was one of the worst experiences of my life, I felt completely violated and humiliated. I was not told what was to be done so I was shocked to find myself alone in a large, open room with a male technician doing my setup. I was quickly on the table and uncovered waist up and told not to move as he fitted me into a mold. I was very upset that during most of what he was doing I could easily have been covered up. Some other unidentified male came into the room to bring him something, my male RO came in to mark me for the field, then the first guy continued his work. I was also strong armed into tatoos which I very much regret. They were very painful and are an ugly reminder I see daily. Also they are MUCH larger then the example the nurse showed me on her hand to convince me! The worst part of the experience was when he pulled out his camera and took several pics of me, didn't even say a word about what he was doing, just did it. Due to my head being slightly turned away and wearing a face mask he never saw the tears rolling down my face. I do believe this particular person has come to see this as all in a days work, but it's NOT to US!! I also hear many woman say that by the time they hit radiation they don't care anymore, they've lost their modesty and don't care who looks, pokes or prods. And to them I say more power to you, I WISH I could be like that but I'm not and many of us are not. So it's really important for all of us to speak up, I so regret not saying anything. We DO still have our dignity and modesty and it should be respected!
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Colliesalways, I'm sorry you had to go through such a horrendous experience as well. I just don't understand how medical professionals in all areas can be so uninformed and/or insensitive to the patient experience they provide. In an effort to address my issues, I attempted to identify a patient ombudsman or advocate to provide the professional staff with the opportunity to learn for future patients. To my surprise and dismay, apparently no such position exists in the large hospital system I am in, which is disheartening. We must speak up, and yet it is very difficult to voice our emotional reactions to what appears to the staff to be all in a day's work. This forum gave me so much support, information and courage, and truly helped me deal with radiation. Four more days to go, now only the "boost" to radiate only the site of the surgery, and I'm done. At my final meeting with my radiation oncologist today, I told her "this is meant in the most positive way, thank you; but other than the follow-up with you in 3 months, I hope I never have to see you again." She totally understood.
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ColliesAlways - is there any possibility that you could have a friend with you until it is time for the radiation. My experience was not like yours, unpleasant yes, but I did feel like I was treated professionally. One problem I did encounter was a summons for jury duty. I asked the social services person to write a note why I needed to be excused. The letter was horribe and went into all this detail that did not need to be there. I told him what was wrong with the letter, that it only needed to say that I was under a DR care and could not do jury duty until I was through with treatment. He was surprised that I thought the letter needed to be rewritten, but he rewrote it. It would be nice to have an advocate 24/7 , again maybe a friend could help. I am learning to stand up more for myself, but do get depressed at times that it has to be so hard.
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Collies that is so very wrong the way they treated you. I really think that you hit the nail on the head, they do this all day, every day. And they simply forget that we (the patient) don't and that this is terrifying for us. I was lucky, my dr asked if I have a preference for female techs and I said yes please. She said on occasion there may have to be a male tech just because of scheduling and patient load, but they will always try to have the male be the tech who is outside the room, not inside lining me up. When I had my simulation, the techs were totally awesome, which is good because I popped a migraine 5 min after getting there and almost passed out on them. I guess that kept it fresh for them!
I know that thinking like I am going to suggest is def not helpful to everyone, but it is def helping me be ok with bearing my boobs to one and all, just because I found out for some cancers, the intrusiveness of treatment can be WAY worse. I have a co-worker who had uterine cancer and radiation. I was appalled to learn how they do radiation for that. It involves a probe going into a very private location. And you know how our boobs perk up and shrink? Well the same thing happens to the tissue down there. She now has to "stretch" herself every day with multiple devices of increasing size to prevent things getting so tight that she has trouble going pee. So compared to what she had to endure, I am quite relieved that all I have to do is drop my boob down a hole.
I am not trying to make light of how embarrassing and somewhat degrading this entire process is for us, but when I'm down about something it just helps me to remember that there is usually someone who has it (whatever it is) much worse than I do.
I also wrote a rather negative review on my anaesthisiologist when they texted me a "give us your input". He fine in terms of how well he put me under and controlled my pain, but he treated me like a slab of meat on the table. Just walked up and squirted stuff into my iv without even telling me he was there, much less what he was doing and what it was. Didn't speak to me at all. Also didn't speak to me except for 2 sentences when he came to "see" me pre surgery. It was just another one to knock out. A number not a person. So I gave him good marks for technical expertise, but left comprehensive comments on how he could interact and relate to his patients much better, to help they feel comfortable and safe as they are put under.
Good luck Collies. I would def tell you RO that you would very much prefer to have an all female crew do your treatment sessions.
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Activewoman: So you are done with rads now right? I've been to busy to get on the boards so I haven't replied. I have been surprised as well that most of the places I've been for treatment don't seem to have a patient advocate. My medical building does but I have had no complaints with them, they have been so fantastic there from day one. I have a follow up in Nov. with my new RO who took over when the male RO left. I do plan to kindly let her know a few things could be improved!
BlueGirlRed: I'm glad you spoke up and got your letter issue straightened out! Learning to speak up for myself is something I am really working on and getting better at.
Arabiansrock: Love your name, they really do don't they! Love them! Thanks for your comments. I usually do the same thing and think about how situations that stress me could be so much worse but that particular day I fell off the deep end and nothing was going to help me lol! I am done with rads but when I see my RO for follow up I do intend to offer some suggestions and hopefully they will, at the very least, do a refresher course with their staff on having consideration for patients who are going through treatment.
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Collies - I hear you about having days when no amount of telling yourself others have it worse helps. I have had quite a few of those myself since diagnosis. I am glad you are finished, hopefully you did not have too bad of side effects. Def tell your new RO about things that could be better. You will be doing the ladies who come after you a big favor.
I don't have the best pics of my horses on this computer but here are a couple of horse pics. This is my boy (a warmblood) and me.
This is my daughter and our first arabian Violet (many years ago)
And this is my older Arabian boy Romeo and me (he passed about 3 years ago). My son and his wife did an engagement photo shoot on him, they have a georgeous photo of her on him in a dress. Romeo really loved her.
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