Prone or "face down"?

BlazerFanC

I've only had the information meeting with my RO and my next appointment is on 5/17 and I believe it will be the simulation appointment.  I wasn't aware of prone (face down) until reading this board.  I'm barely a B and in my 50's so when I'm on my back there isn't much there away from my ribs.  I'm thinking that face down might be better for me to protect my lungs and ribs but when the RO described the treatment it sounded like I would be on my back.  I didn't know to ask about the prone position.  My DCIS was high grade but small and in the 6 o'clock position.  Does it sound like something I could be a candidate for?  Should I wait until the simulation appointment to ask about it?  Is this something done only at some clinics?  Maybe I would have to change?  I've been pretty calm up to this point through 2 biopsies but now I think reality is starting to set in.

kira66715

Blazer, I believe "face down" is only offered in some clinics--so I'd advise talking to your RO about it. 

It's so normal/common to soldier on, and then have our emotions catch up to us.

Kira 

CTMOM1234

I cannot speak highly enough about having rads in the prone position!!!!!! 

My bc was on the left side, and I was concerned about potential long-term impact on the heart (I was in my early 40s). Like you, I'd first read about it on this board and when I asked my rad onc. at our initial meeting, she was like "Sure, I used to do that all the time at my old place (Sloane Kettering), it isn't done as much here, but no reason why not." So I think many people, unfortunately, just don't ask, but it's a shame that we have to educate ourselves and advocate for ourselves.

An added bonus which I didn't appreciate until I had to have the last 5 zaps (which were boosts concentrated at the scar line) not prone but face-up, is that it was so much more private being face down for the 25 full-breast zaps.

The ability to have rads in the prone position will depend upon two things: 1) Has your rad onc. done it that way before (there are some older and/or less educated rad oncs out there, but prone rads has been around for sometime at the more "cutting edge" places) and 2) Not to be too graphic, but you need to have enough "hangy" breast that gravity pulls it away from your ribs -- my dcis was in a very similar location to yours -- about 5 or 6 o'clock -- and I am a 34c.

Do not wait until post-simulation to discuss this as an option, as the purpose of the simulation is to replicate/set up what will be happening. My simulation was in the prone position with lots of measuring and lining me up to make sure that all beams were going to be where they needed to be while minimizing hitting anywhere else. You will also receive either tattoos or sharpie markings covered by stickers (I opted for no tattoos, some places are adament that one must have permanent markings/tattoos, which will be teeny but given the option, I just didn't want even the teeniest permanent reminder of this . . . besides the obvious lump.scar).

Hope all goes well.

Teal3Pink1

Last month I finished 16 WBR prone plus 5 boosts face up. When I was searching for more information on rads in the prone position before my consultation with RO, I saw a study from the Netherlands that actually had the word "PENDULOUS" in the official title of the study. Totally cracked me up and now I try to use the word in a sentence once a day.

BlazerFanC

I just spoke with the nurse in my RO's office.  She said she isn't aware of prone position treatment.  She assured me the CT scan is very detailed to keeping other areas safe but I don't know where to check from here.  She asked me if I was aware of any clinics in our area but I'm not.  Not sure what to do now.

I love the term "hangy" CTMOM1234  I think I fall in that category.  Teal3Pink1  I don't think I'm big enough to be "pendulous" !  I'm a 38-40 B

CTMOM1234

Ahahahahahahaha! Not too many times that someone's post on these boards makes me belly laugh, so thank you, Teal3pink1 for writing "I try to use the word (pendulous) in a sentence once a day."

BlazerFanC, it'll be OK if you don't get prone zaps, but also don't give up too quickly although I do think it is a shame that we have to be our own advocates. Is there a hospital affiliated with a medical school in your area, because that may be your best bet for getting prone treatments? , Truthfully, the set up for prone zaps was really no big deal so every place could offer it (assuming you have the "proper shape" --  you know what I mean)

gymnut

just thought i'd weigh in on the issue in case i could be of some help.

i just finished my radiation (yippee!) and my b/c was also in the left breast & i'm also very small-breasted, i.e. i'd be a candidate for reconstruction & augmentation if i wanted & maybe i'll change my mind & go that route at some point in time....fortunately, at least at this point, both breasts still seem to be about the same size, or so it seems to me, even after excisional biopsy & re-excision but what they needed to take was very little.

as far as the treatment position, i also 1st learned about prone on this board so i spoke to my rad onc. about it.  since she did two fellowships at sloan-kettering, she was trained that way & perfectly comfortable with it, so we discussed the option.  i would say definitely ask & you might want to raise the q in advance of your appointment.  they can't do it everywhere & you want to be sure your doc is competent & comfortable w/ it.

my rad onc also explained that everyone's anatomy is different & she said she wouldn't be able to determine for sure until we did the planning session which position would be best for my anatomy, to best avoid heart & lungs.  we mapped out in both positions & i ended up needing to be treated lying on my back after all, b/c my heart was right in the way in the alternate position.  i asked to see the ct scans to see where things were & why that was the choice & they showed me.

you're advocating for yourself & i think any good physician would understand & support that.  just my .02

good luck & take care.

redsox

Yes, it really depends on your anatomy in each position.  Prone does not automatically keep organs such as the heart safer because those organs move (a little) within your body in response to gravity.

BlazerFanC

I've been spending the afternoon with my friend Google and I haven't found any clinics in our area that mention prone position treatment.  I've found lots of seminars where information and studies have been presented though :-) 

It sounds like most of the clinics offering this treatment are in the Northeast and I'm in the Northwest.  I've also learned that if your BC is on the left it's better to be "pendulous" but it doesn't seem to matter as much on the right.  Mine is on the right.  I may not have an option in my area but at least I'll have more questions next week.

Blinx

Wow, didn't know they even offered prone rads. That would have taken care of one of my irks. I'm one of those "pendulous" patients (aka droopy), so much that they had to strap on what I called the "slurpy cup lid" to hold my breast in place, while on my back. Required extra tattoos and embarassment. Don't know if it makes a difference, I had whole breast radiation as well.

judyfams

I too had to search to find a place to do rads in the prone position - but it is worth it.  Do not be rushed into anything - you are not under the gun to have radiation within a certain time of the surgery.  I had lumpectomy on 3/22/10 and began radiation on 10/4/10 (yes I had chemo in between).

Call you RO now before the simulation and don't ask- tell him you want to be evaluated to see if you can have radiation in the prone position.  The hospital in my area would not even evaluate me for the prone position, so I called other radiation centers NOT affiliated with hospitals.  Also call your mammo center and ask them to give you the names of radiation centers in your area - don't mention prone to them just ask them to give you their phone numbers. Then when you call those places directly ask them if they can evaluate you to see if you are a viable candidate for radiation in the prone position. 

It would be a great help if you can get a disc copy or a copy of the actual mammo X-rays that you can have and take with you since the RO does need that to correctly assess you for the prone position.  If you have your own copies to take with you to your appointments you can save a lot of time.

Definitely go for it - it is better to have rad in the prone position if at all possible!

Judy

CTMOM1234

I am glad that this thread is helping those of you who are in the pre-simulation phase of rads to have the conversation about prone-position rads.  I continue to be so thankful that someone started a similar thread a year+ ago when I was in your place!

Not only do I wholeheartedly believe that the prone position was far safer in protecting my heart (I had left-side zaps) as well as ribs and lungs, but I actually think it did a more effective job with irradiating my whole breast. My dcis/idc was in the ~ 6 o'clock position and by being prone, the bottom/"fold" of my breast was better exposed.  The added bonus of additional privacy was surprisingly something that I only appreciated when my final 5 sessions were boosts given in the face-up position -- and those sessions seemed so raw and exposed to me, even though I'd already had 25 treatments with the same people, in the same room, etc.

I also believe that had I not asked about the prone position in that first meeting with my rad.onc (who I did not see again until the simulation, well I was face down so I heard her only), I would not have had it that way. In fact, my rad.onc was very busy on that initial meeting day and the first 75% of our initial meeting was with "assistant," a brash med.student who dismissed my request as not something she'd seen done at this place. She was however surprisingly fixated on my agreeing to be part of the Canadian protocol of fewer zaps but at higher intensity each time. Seems she was looking for a research paper to have published and I was not in a position to educate myself on yet another thing about this process. I kindly stated that I was going to stick with the standard treatment however many that was once the rad onc. told me (Canadian was still very new and some had reported more skin problems due to the higher zaps) and I nicely brought up the prone position to the rad.onc who immediately said sure.

My simulation was never in both face up and face down to compare things, and truthfully when I got into the room, everything was all set up and measurements happened quickly. I never got any push-back and I'm not even sure how much my rad.onc. even had looked at my "hangyness" -- that first meeting was a blur, but I sure appreciate her being educated on the current treatments and willing to listen to my request. I continue to think it is such a shame that we have to educate ourselves but I had the most to gain ... or lose .. so I was willing to speak up. It helped to feel validated.

Good luck everyone!

Valgal

Dear Prone Friends,

I am huge (48DDD) and I suggested prone and I was really glad I did. I know it wasn't common for my facility. My overall discomfort was minimal and as far as skin... well being really fair skinned the Drs. thought it would be a terrible burn for me but it wasn't! I think it was the prone position, because the radiation wasn't hitting my chest wall or "in the fold" as they say. Good luck and I hope everything works out for everyone!

P.S. As far as the interns go...the one I had in Radiology told me to put ice packs on my breast !!! LOL I said I don't think I'm supposed to -from everything I read. When the Dr. came in the intern was pretty embarrassed. After that my nurse friend told me it's your right to say you wish to be seen by your Attending Physician and that she always does- because she's sick of students probing her. They have to learn someway but I was just not confident in that intern... so speak up if you want the Dr.