Deep inspiration breath hold experiences

Numbalina

I just started radiation treatments and have been doing the deep inspiration breath hold (DIBH) technique and I am curious about the experiences of others who are being, or have been treated this way. If you haven't heard of this, it is a technique used to minimize radiation to the heart and lungs in cases requiring radiation to the left breast. More info is here: Latty, D., Stuart, K. E., Wang, W., & Ahern, V. (2015). Review of deep inspiration breath-hold techniques for the treatment of breast cancer. Journal of Medical Radiation Sciences, 62(1), 74–81. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4364809/

Cowgirl13

I had DIBH and it was a piece of cake. My surgery was also left breast @ 2 o'clock

Love the picture of your kitty!

bethanygb1

Just got done with my left RADS, 25 sessions and a little red but not bad. I did the breathe and hold method.

NancyHB

I did the breath-hold too, but was aided by an something that resembled a scuba breathing apparatus so that I exhaled and "held" at just the right point. It was easy and never uncomfortable. My tumor was on the right side of my left breast near my sternum. Used this for my 25 sessions and 5 boosts. 4+ years out and only minimal radiation fibrosis to my lung in one small space (seen on CT), my heart is great!

Numbalina

I am having a pretty tough time dealing with the time between when they line me up and take the images to adjust my position, and when the actual treatment begins. The treatment itself is fine. No problems with the breathing technique at all. I am ok waiting for about 5 minutes for the treatment to begin, but anything longer than this and I start to lose control. It is a perfect storm for me physically -- laying perfectly still with a clip on my nose and the snorkel breathing tube gripped between my teeth is hell. Laying flat on my back, arms above my head, on a hard surface in a cold room is torture. I have asthma, allergies, horrible sinuses, a very sore nose (the inside of my nose is still recovering from being completely eroded bloody mess thanks to the chemo), and bad rotator cuffs! I had a panic attack on the first day (full on body sweat, heart racing, hyperventilating, screaming in my head) after waiting for at least 10 minutes post imaging for the treatment to begin. On the second day, after waiting for close to 20 minutes for the actual treatment to start, I was so angry I was about ready to do someone bodily harm. Day 3 began with me telling the techs that I didn't think I could go through with the treatment if I had to lay there for so long for the treatment to begin. Thankfully they were much faster, but it surely doesn't leave me feeling very good (I am hoping that the positioning they did was accurate!). Today, Day 4, I waited for several minutes for the treatment to start, but it was ok.

I am really perplexed at the whole experience and I am trying to assess if I am being unreasonable in my expectation that I shouldn't be uncomfortable for so long. I am the type of person that gets small fillings without Novocaine, so it isn't that I am super sensitive. The fact that the techs were completely oblivious to what I was experiencing on Days 1 and 2 is also troubling. Aren't they supposed to be monitoring what is happening via the camera and the breathing apparatus?

Numbalina

Cowgirl13, love the picture of you(?) and your(?) horse (a bay? or is it brown?). I had horses for many years until my allergies made it impossible. Still miss it terribly, and so I have been going through allergy shots for 6 years now. Hoping that I can have horses again in the future.

bethanygb1, glad to hear you only got a little red from the radiation treatments. Way to go! No issues with waiting while the techs determined how to move you each treatment?

Love the dog in your photo, NancyHB! Oh man, it sounds like your radiation treatment was in a mighty tight space. So glad to hear that you haven't had any problems from the radiation beyond the spot on your lung. I see that you had a different (!!!) tumor in the same breast. No radiation for the second one, eh? This is one of the things that I asked the ROs about, since I know that possibility always exists. Both of the ROs I saw said "well, maybe" and so I am curious as to what you were told about radiation for the second tumor in your left breast. There should be a medal, or better yet a crown, bestowed on anyone who has had to deal with this disease twice.

NancyHB

Numbalina - So sorry to hear of your rads experience, it sounds horrible! Have they explained why it's taking so long to get you started, once they get you all lined up? I understand the panicky feeling, especially with the breathing thing in my mouth and not being able to move...definitely unpleasant for more than a few minutes. I don't remember waiting as long as you, though maybe the first couple of times it was a few minutes longer (in my mind I wanted them to take their time and be sure, so I wasn't being damaged accidentally). In fact I was usually in-and-out in under 15 minute each day (of course the most time was getting me set up). After the first week or so it seemed we developed a routine of sorts for set-up that made it quicker. I really hope they figure this out quickly for you, so the next few weeks go by quickly.

I had lifetime radiation to Lucy, so no, I couldn't have radiation this time around. I remember sitting in the ROs office the first time and wondering if I should wait and hold on to radiation in case I'd need it again in the future. My RO said that was foolish, that they would "cure" me the first time and it wouldn't come back a second time. Bzzzzzzt - wrong! I had a local recurrence which means it's in the same place, so my TN cells survived rads and boosts and came back more aggressive this time

And thank you - I love my grandpuppy Tank! He's a huge, wiggly, snuggly pitbull who also believes firmly he's a lap dog. :-) And he's a total ham - every time he sees a phone he poses for a picture. :-)

Good luck - I hope things improve for you quickly!

Marlenelin

I am going through proton radiation and don't use an apparatus but I am having the exact same problem as you. First session took over an hour because of going through all the pictures and there was a software problem and they had to get a physicist to check things out. second session was better and done in 20 minutes. Last night was 40 minutes and I thought I was going to die. Laying flat on the cold table and waiting in between pictures was horrible and I had a hard time swallowing. Found I had very little saliva and kept trying to swallow but couldn't. My treatment itself is only three minutes. What the heck takes them so long. I asked and they said the positioning. So why does one technician need only 20 minutes and another an hour. Told my husband I don't want to go back. He said tell the doctor that. My arm is so sore having to keep it up over my head and to the opposite side for so long. I have 33 treatments and 4 boosters. Had my third last night. I am going to pick up Biotene spray today and see if that helps with the dry mouth and swallowing. Chemo has made that so much worse. I drug myself with adavan before a radiation treatment but it doesn't seem to help. I'm stage 3c Sometimes I wonder if all this is worth it.

Take care Marlene

Cowgirl13

Gosh, ladies--this sounds terrible. Did they not make you a mould that keeps your arms up? I also had the gated breathing but didn't have any apparatus on me--it was just hold your breath and look at the gating screen to make sure you were in the correct position. I was lucky as the place I had my radiation staff was very friendly.

Numbalina - the horse is a bay gelding. He was a lesson horse and I was his TLC person (tender loving care). BTW, I love the pic of your kitty.

Mariangel43

Hi, ladies. I was reading your comments.

Nancy, no md can say that rt tx will cure anything. That is a lie and purely manipulative. After a recurrence, no more RT is added to the same area. It is a No, NO. The dose they apply is full lifetime dosage for the area.

Numbalina, I am sorry to hear your awful experience with RT. I don't know why they don't use molds on you to fix you to a position with less discomfort.

Marlene, as far as I know, the first time is a simulation when they cat scan you and make an image of your torso for medical measures and diagnostic purposes. They do not radiate on this one. However, after having passed through an MRI study, I can agree with you that positioning is horribly uncomfortable (I was looking down with arms extended over my head). I wanted to kill the tech. I squeezed that darn thing in my hand that I lost the count and the tech didn't care. I begged for mercy and they left me in that position for nearly 1 and half hour. No more MRIs for the rest of my life unless is an open one with music. I had trouble with cervical spine for the rest of the week.

Since the medical profession is so reluctant to make changes in their protocols, they should work with those nuances in their provision of treatment. They need to be cost-effective while not affecting quality of treatment. Molds don't cost so much and they can include them in the overall list of charges. (They did in mine.)

I hope to hear that you are doing well with RT tx with no problem in positioning. Good night. I need to go.

Numbalina

Sorry that I have not gotten back to this sooner. I have had a very full few days and haven't had the free time to sit down and respond.

Cowgirl13 and Mariangel43 I do have a body cast that was made to get me in position. I don't believe that is causing any of the problems I have been experiencing (although it isn't exactly a Serta, if you get my meaning).

I ended up seeing my primary care physician and getting some Xanax to try to get me through the next month. I have never taken anxiety meds. Even with the drugs, the treatments are still an experience I hate reliving day after day. After several treatments that were tolerable, I had another awful experience yesterday. One of the pains that I experience is caused by a post that projects from the surface of the table. I assume these posts (there are several) are used to hold the body cast thingy in place. The one that is under my left arm is exposed and has bothered me from the first time I got on the table. Yesterday my arm went numb from the elbow down because of the pressure on the nerve in my lower arm. The techs do try to make me comfortable, but a facecloth stuck on top of a hard plastic post still results in a lot of pressure to a very small area. Dreading each treatment. I had to take two Xanax today to get me in the building. I felt dreadful for about 5 hours afterwards (one of my colleagues asked me if I was ok, since I was so pale), and so I am not sure I will be doing that again.

Marlenelin, did the Biotene help? I hope your treatment time is improving. I am finding there is definitely a difference in the time each tech needs to determine how much I must be moved to begin the treatments. I told my RO about how bad it was, and in no uncertain terms told him that I thought what I was going through was the most sadistic medical experience I have ever had to deal with. He gave me a hug (which was kind of icky and made me uncomfortable). Feeling your pain, sister!

Houston2016

Hi Marnelina, I talked to two RO about proton therapy since I have bc on the left breast. Both said proton rads are not for breast cancer. They said its used with deep tissue such as brain cancer or other types of cancer that has depth. Wonder why your RO would recommend that.