radiotherapy for DCIS after surgery

lmiller

i am very nervous about getting radiotherapy after removal of a DCIS in my left breast. I am told that I will have to use a technique (DIBH) Deep breath hold technique. Some hospitals use a manual method of stopping the radiation if your breath hold doesn't meet a threshold. Other places use an automagtic cut of system.  The manual method scares me as it relies on a human to cut off the radiation. No matter how good the doctor is that performs the therapy everyone is subject to potential error. Exposure to the heart can cause heart problems in the future i have read in research. I don't understand there is not one standard treatment. Am I overly worried about this or is my worry warranted. Maybe the different techniques are related to age of machine and funding in that hospital. If you can give me some advice I would really appreciate.

Thankyou

Lisa

Aska

Hi @lmiller
I had left side radiation.  During planning stage I couldn't hold my breath steady enough,  so my plan was without breathe hold.  The treatment was altered accordingly. I do worry about possible side effects in future,  but I just trusted the experts. 

cranky_granny

@lmiller i did the DIBH 7 years ago. It was needed for me as my tumour was at 9o’clock left sided and  it was attached to my sternum and a few other bits so it was the best way to go in my circumstance. I went through a planning session and practice session. I practiced it at home before I started radiation.  I had a snorkel which was interesting to use. Im glad i got to practice before as it helped iI could actually hold my breath for longer than needed. I used to listen to soft music and close my eyes. You don’t have to hold your breath for the whole time. They are watching you through the whole process I’m sure the radiology team will help you out. If you cant manage it they would have an alternative. 

lmiller

Thankyou both of you for telling me your experiences. It does give me comfort at this anxious time. I will tell you how it goes in the near future. I really appreciate that I can speak to others that have gone through similar situations. 

GorgyS

I had a planning session for radiation to start on July 15. I will have radiation on the left side. However, during the planning session, I could not hold my breath. After a few attempts, the medical team decided that I would be okay to have radiation without holding my breath. They assured me that it would not affect my treatment or my heart. I trusted them and am happy to have radiation without the discomfort of holding my breath. 

Julez1958

Hi @lmiller
I had the manual deep breath through a “ snorkel”.
I had a planning session and took to it like a duck to water!
Probably as I have done a fair bit of snorkelling and had already practiced holding my breath for that.
They played music that I quite enjoyed and I visualised myself snorkelling at the Ningaloo Reef in Western Australia  which I have been to and hope to return to .
one day.
I had 28 sessions and also had strata xrt cream ( I had to buy it online and it was expensive) but I avoided any skin burning .
Many centres use Mepitel for 
free to prevent skin burning but I wasn’t eligible .

unicorn3

I’ve almost finished 3 weeks of left side radiation with breath hold with a machine that stopped automatically if I was not breathing properly but I never had to use it. 

They practice with you at the planning session and did say that there are other methods if you can’t do it. 

FLClover

Hello. I had bilateral radiation so I had to do the deep breath hold as well. You don’t need to hold your breath for a long period, as it’s a start/stop sort of method. I didn’t find it difficult, but there was one time when the machine stopped automatically when I wasn’t doing it right, and I’m very glad it did. I also can’t understand why there’s not one standard machine they all use, but I’m gonna guess it’s for the reasons you listed above. I honestly don’t know how they manage to make it safe for people who can’t hold their breath, but I’m like you in that I’d prefer the machine does it automatically. Radiation is not something to be taken lightly, as it does a lot of damage, and the heart needs to be protected at all cost. And humans do make mistakes, even experts in the field. Then again, so do machines. I’m not sure how to help you, except to say you’re definitely not overreacting for being concerned about this. 

I hope it goes smoothly for you 🤞. 

P.S. I used Mepitel prophylactic film dressing, and it saved my skin from serious burns. 

GinGin

Hi ! I had radiation for my left breast. It was the DIBH technique and the machine shuts off automatically if I can’t hold my breath. I didn’t have any problems with holding my breath. But I know there are some ladies who struggled with this technique. 

I can understand your fears. Can you ask them what is the margin they are working on before they manually shut off the machine. Let them know nicely that you want to feel assured and how can they make you feel assured if you can’t hold your breath. The last thing one wants is walking into radiation feeling nervous and we can’t focus on what we are supposed to do 🙈.

Coastiejas

Hi @lmiller
I'm 19 of 25 fractions down of left sided radiotherapy using dibh. I was worried about it before I started but it's really been no problem for me so far.  You only have to hold your breath for between 10 to 20 seconds and they let you control when you take the breaths in. I get a screen with lines on it and you have to get the white line in the middle with your breath before they will beam you. It's a bit like a strange sort of computer game! I have a background as a musician playing woodwind musical instruments and also singing so that may have helped me.  Also I do qigong and meditation and apparently that helps too as does yoga as all are focused on breath control. 

Best wishes.

Maree72

Hi @lmiller,
I have just finished my radiation of 6 weeks worth last Friday, 5th July, mine was also left breast, with deep breath holding, 25 treatments and 5 boosts worth.
I too was absolutely beside myself about radiation as I had done so much research. My team were very helpful, as on occasions I was unable to hold my breath for the time they needed me to, and the machine did cut off, they place a small bock taped to your tummy for the can see the chest movements to see how the breath holding is going, m team broke up each fraction as I had 7 lots in each session, so they broke the 7 up into smaller hits so I could hold my breath, some days I was good, others not so great, just let the team know how you are feeling each day, I always took in my Sippy cup of water to stop drying out my throat too. Best of luck -

lmiller

Thankyou ladies for helping me through this experience. Your words are comforting. Much appreciated for this site and your information. I will tell you how it goes so that other people can learn also from my experience.