Ra Ra for Prone Positioning Radiation tx -Spread the word

newbee

Hi--I will have to change my title because I am no longer a "newbee". I had a lumpectomy/partial mastectomy Feb 11 and am half way through rads. No chemo needed. Onco Dx score 16 and node negative. Thankfully.

I researched and was willing to travel to find "prone" radiation. Prone is a position women are placed in , face down, on the radiation table to avoid damage to heart, lung and ribs. It works if your breasts are pendulant(a bit larger and hang away from your body). I found that Dr. Mariyn Ling, Radiologist at University of Rochester NY Medical Center, right in my town, gives radiation in the prone position, if requested, instead of the  (face up) position. I also opted for the Canadian method: 3 weeks of radiation, 1 x day, and then one week of "boosts" to the previous tumor bed. So far, after 8 treatments, I do not have side effects. I am starting to get a tiny tan, but so far, so good. Prone positioning only radiates the breast, away from internal organs and ribs.

The standard, mostly male body of Radiologists seem to be fighting optional treatments which have been proven to be as effective (through 10 yr studies). I suggest women research alternaive types of treatment available to them and go to more progressive centers for such treatment. Perhaps we can set up a network of women whose homes we could use to host women who must travel to larger university settings to receive this type of treatment.

Stand strong and be assertive with what you think is best for you. It is your body...your life. Research and learn as much as you can before making decisions. We no longer have to accept the status quo and doing it the same old way, which may not be the best way because "Well, that's the way it has always been done." It seems that we are generally over-radiating women with breast cancer and the side effects are sometimes worse that the disease, especially years later. I am generalizing here, I understand, but it doesn't change the basic message...be your own advocate and learn as much as you can about your specific situation and best treatment available..Good luck Sisters...

Sallyann

I am 11/36 in prone position for RT and my OR is a young woman. She changed my position mid-rehearsal (1st visit) and the main tech person (also a young woman) was miffed when the MD interrupted and decided it was better if I lay on my belly. Prone position is much better as it minimizes lung/heart danger, but more "work" for techs. Harumph!!

All it means is they have to add an insert to radiation table you get up on so that you lay flat on belly and breast hangs down into a hole. Ask about it and if they don't know about it, tell them to get with the program.

Annette47

I did my rads in the prone position.   Not everyone is eligible as it depends on the location of your tumor/radiation field (e.g. if you are getting nodes done, it won't work), the size of your breasts and what your heart does when you are placed in that position, but it is certainly worth asking about as when it is possible, it does reduce the radiation exposure to the heart and lungs.

I did have to change position for my boosts though - had to lay on my side for that.

Waitingforthenextstep

newbee,

            Absolutely agree with you!  I had prone position, only 16 tx's, no boosts.  I am doing well after one week.  I found out about prone position on these boards, so we are spreading the word..  It can be found here in NYC,  in more than one hospital.  This thing about rad techs and drs. not wanting to do it is crazy.  Medicine is all about progress, I dont think many women know there are other protocols out there.

sundust

I did radiation in the prone position too -- I decided that is the only way I would have it done, and I would have traveled if I needed to do so. Fortunately, I found a doctor in my hometown who specialized in this. I also had 3D-CRT instead of IMRT, to reduce the risk of second malignancy due to distant scatter, and I followed the Canadian method (with no boost in my case -- I did exactly what the women in the 10-year study did). I kept the time between surgery and radiation to a minimum (about 4 weeks).

Demand the prone position, if you are a candidate for it. It is almost always better!

CTMOM1234

Yes, Yes, Yes -- I am a big cheerleader for prone position!!!! And I continue to pay it forward here, because had someone else not posted about this option, I would not have known about it. At my first meeting with the rad onc. I explained that I wanted prone rads and although it was not common practice there, she respected my perference and I met the criteria. I also did not want tattoos, and she was wonderful about that as well.

It is your body, you are your best advocate!

SheilaB330

I had 5/11 nodes with cancer, 4 of them were extranodal - coming out from node. So am supposed to lymph nodes radiated but radiologist said lymph node area was a higher area on my breast - not arm pit. Any way have large breasts that would hang down if prone but why can't they do nodes from here too?



Thanks

Sheila