Conduct of health care providers

Chrisesta67

I'm a bit more than halfway through radiation therapy for stage 2b breast cancer with micro-metastasis in the sentinel lymph node. The radiation is going okay - red, tight skin but nothing I can't tolerate. What I find most troubling is something I didn't expect; some of the radiation technologists take what feels to me like inappropriate liberties with my body. I feel very vulnerable laying on the radiation table, bared from the waist up with my arms outstretched above my head. While I was in that position, one radiation technician scratched my burned underarm area while placing the gel pack on my skin. I could see her jewelry dangling over me as she worked. And today, another radiation technician began to rub the skin in the radiation field with an alcohol swab. She said she wanted to clean the ink marks off my skin for me but she did not ask my permission. I've been cleaning the ink off at home with a gentle moisturizing cleanser; I would never use alcohol on my damaged skin. Then, the same technician touched my face without my permission. I was so upset that I asked to be let off of the machine and I went home without having the radiation. I'm not certain whether I'll go back tomorrow or not.

I'm tempted to write a brief list of requests to be shared with the radiation technicians before I resume treatment. For example... please tell me what you are going to do before you do it, making sure that I have understood and agreed to it. Also, please do not touch me in non medically necessary ways or areas.

It's hard to be so vulnerable with this kind of treatment. I know my experience would be less traumatizing if the professionals who administer the radiation sessions could better understand my personal boundaries. I'm curious to know what others think.

DeliriumPie

I think the list sounds very reasonable. I always feel more at ease when people are telling me exactly what is going to happen and what they are doing when they are working. Interestingly enough, these happens least often at the rads office. Do you have a navigator where you go for treatment? If so, I think that would be the place to start. What reaction did they have to you walking out?

lane4

Chrisesta67 - I'm also curious to know how they reacted to your walking out. I felt like doing that so many times, myself -- wish I'd been more assertive. On the day I had my simulation, the RO apparently could see that I was distressed by the experience and said, "Oh, you'll lose your modesty before this is all over with." I was not pleased that there was a young man trainee as part of my team throughout rads. And every day when I got on the table, one of the techs would snatch my gown down as I was laying back, never warned me first. I know they had to hurry, but geez.

Chrisesta67

Thank you both for the kind replies. I went back to the radiation oncology office today for my treatment. I brought a brief note with me about my sensitivity to touch and a request that the nurses/technicians let me know what they need to do as they work so that I can better understand and feel more confident about the treatment process. I also asked that touching me be limited to touches that are medically necessary. The two technicians present today were very receptive to my requests and the treatment session went very well. Now, I've completed 20 sessions and have 13 more to do.

Regarding my emotional response and spur of the moment decision to leave before the treatment was completed yesterday, the technician whose actions upset me apologized and did try to get me to reconsider leaving. At that point, I was feeling too vulnerable and emotionally exhausted to do anything but leave. In retrospect, I know her intentions were good. Part of why I became so upset related to my own deeply felt vulnerability. I'm glad I returned and received my treatment today.

I met with my radiation oncologist after the session today. She is a kind person who seems to understand my anxieties and makes room in my treatment plan for occasional experiences of distress and fatigue. Overall, I feel as though the members of my radiation oncology team are patient with me and receptive to my concerns. The experience of being a cancer patient has really inspired me to think about the nature of the patient/healthcare provider relationship and the importance of patient self-advocacy in the treatment process.

I hope my follow-up message today is helpful!

DeliriumPie

glad it went better for you today Chris. I think you hit the nail on the head with them being in a hurry. That is something I have noted during each of my visits with the rad facility. It has been jarring at times for me, especially since all of the other offices in my center are so patient and caring. I hope they flagged a note in your file so that different techs in the future will see your requests.

CarolynVM

I will never forget the callous treatment of the radiation techs. I felt like a slab of meat. It was absolutely dehumanizing. I should have changed radiology centers before treatment even began. I knew then that my well-being was at the bottom of their list.

lauribob

I'm glad that you were able to reach an understanding with your caregivers and sorry that you had to assert yourself to reach that level of comfort. I was fortunate to have considerate technicians who always talked about exactly what they were doing, even after we had done it every day for some time.

I had to have a ct scan at another facility one time because my normal clinic was getting a new machine. That was an experience! I had to change in a closet because they had no dressing room available. They also had no breast gowns, so they gave me a regular hospital gown - the type that opens in the back - and told me to put it on backwards. There were no ties or anything to secure it whatsoever and it was very snug. Then I got to walk down the hospital corridor, holding my purse and clothing, while trying to clutch the gown closed. Into the ct scan room and off with the gown. The door opened directly into the hospital corridor, and it not only was opened at least 3 times while I'm laying there exposed to everyone walking down the hall, but they would open it and leave it open while they had a conversation. I was frankly appalled. They acted a little miffed when I insisted on redressing right there rather than going back to the closet down the hall. So unprofessional.

All_the_Dogs

Chrisesta67, thank you for your post. I'm so glad to know that I'm not the only person struggling in this way.

This week at my 6th radiation appointment, I became nervous when I was told that my next appointment would need to be changed because of maintenance on the machine and then my treatment did not proceed was not as normal. Twice I asked what was happening and was told they were "just taking measurements" with no other explanation.

Today, I brought my husband with me to my appointment for the first time and they talked to him about the process more in first 30 seconds than they'd said to me in a week of treatments. (And they did address him the entire time - not me.) They were also much more careful of my modesty.

I love the hospital that I'm going to, but the radiation staff's bedside manner has been a disappointment. I'm looking for ways to feel more in control of this process. I'd like to find a pretty, short robe or bed jacket to change into instead of a gigantic, ugly hospital gown that reaches my ankles and has to be yanked around when they are positioning me. Other suggestions?

mrsnjband

I was never very confident with my rads treatments. They kept moving my lines until I called them on it. Just little things. I wish I had pulled the plug when I asked everyone I saw that day I wanted to talk with the doctor but I never got to talk to her. I wish I had been more assertive. Then came the day they forgot about me in a treatment room & I walked out. At my last appointment, I told the doctor everything that happened & she told me I should have used my voice. Well I did use it but no one listened. I fired her at that point and never went back.

To: All the Dog.... a lady that was having treatments when I did made her own top & wore it into the treatment room removing it there. Maybe you could do that too! NJ