Anyone with DCIS had prone radiation treatment?

maize

Prone Position During Breast Irradiation Lessens Lung Cancer Risk

http://www.oncologypractice.com/oncologyreport/news/clinical/single-article/prone-position-during-breast-irradiation-lessens-lung-cancer-risk/63064463e7.html

Prone versus supine breast irradiation in early stage breast cancer patients.

http://cancerres.aacrjournals.org/cgi/content/meeting_abstract/69/2_MeetingAbstracts/5130

CTMOM1234

Yes, I did!!! My bc was on the left side and I am very thankful that my ro was familiar with this -- I am available to answer any questions and highly highly recommend it!

AnneWisc

My RO was quite young and all about following the "standard of care" but I insisted on a more limited radiation therapy than the whole-breast irradiation she recommended.  I was pursuing either brachytherapy or partial-breast irradiation. This made sense since I had only a small tumor out in the nipple area.  Her staff (the rads techs) were more knowledgeable than she about positioning, and I ended up with a prone position.

By using a prone position we were able to get the tumor site to hang away from the body so that a thorough pass with the beam was possible while still staying away from heart, lung, bones, etc.  My radiation was a breeze and I am glad I did it this way.  

The take-home lesson is not only to consider this option, but also to insist that you discuss all the various options with your doc and inquire about outcomes within each.  My RO was willing to contact people within the BC community to learn more about things we could do, and that flexibility on her part is much to be commended. 

Shayne

Love your post AnneWisc!  

maize

Thank you, CTMom and AnneWisc.  Your messages makes me feel relief from the anxiety about some of the risks of the radiation treatments.   I feel a bit intimidated about telling my RO and MO exactly what I truly think would be best for me.  I had asked one of the doctors about prone radiation, but didn't get an answer at all.  The doctor didn't answer and then the subject was changed. The other doctor, who doesn't speak English as fluently as the first doctor, sometimes acts as if not to understand what I am asking (or just chooses not to acknowledge what I ask?)   I am going to ask again about the prone radiation.  If they can't or won't consider it at that facility, maybe I should contact a facility where it is done and where they might consider it. 

I feel like I am going to have to kind of battle to avoid being pushed into treatment I don't want and feel uneasy about, though I know that there are times when there are no other choices available.  I need to feel that they are my allies, not my opponents, and wonder if they feel that everything has to be done by a standard protocol, "old school".  I brought a list of questions, but they both ignored my list.  Maybe they are bored being asked the same questions over and over each time they get a new patient.   Maybe they think I wouldn't really understand even if they explained everything to me.  They are considered experts in their fields and know a tremendous amount more than I do about it all. The RO did say that the DCIS (removed) could not now invade through the lymph nodes or spread via the bloodstream.  He also acknowledged that, yes, standard radiation could cause me problematic late effects 10, 20 years from now, but wouldn't cause me problems in the immediate future.  After I left there, I started thinking about what might happen in 10 years as a result of radiation. 

At the first visit, one of the doctors asked me to participate in a clinical trial.  That clinical trial would apparently require traditional radiation. I would not know the results of the trial, and would either be given a placebo or an investigational drug that has not been approved by the FDA and be given the drug while receiving radiation treatment.   There is some risk of injury to the heart.  If there was permanent injury from the investigational drug during the trial, I would be on my own.  I would not receive free health care to try to fix the damage from injury from the investigational drug. My name, address, personal information, medical history and family medical history would be released to various facilities and I would really have no control over who received what information.  I could later withdraw from the trial, but my personal info would already be out there.  They have called me four times in less than two weeks to find out if I have decided to participate in the trial.  

If there is some reason why I couldn't have prone radiation, I don't know what it would be.  I asked the surgeon about brachytherapy (as Shayne mentioned) before the surgery and was told that it might be possible to do that, but it didn't happen and now, I don't think it can be done.  I was so scared that I just wanted the DCIS out ASAP and surgery was done within about three weeks after initial diagnosis.  The anxiety of waiting for the pathology reports and the final pathology report, final diagnosis and prognosis was awful.

I was advised via email by a supposed medical expert from a bc medical forum (not this forum) that my only option instead of the standard whole breast radiation might be to go back to the surgeon and have a mastectomy done if I don't want to do the standard, traditional radiation treatments???  (The area of DCIS was removed by lumpectomy with clear margins and no evidence of cancer in the lymph nodes, cribiform type, but it was intermediate to high grade). Instead of easing my mind, that email response made me feel more anxious--like: standard radiation or total mastectomy or maybe die imminently from newly developed area of DCIS or invasive cancer if I don't do one or the other?   (The advisor who responded to my question did not give their title or indicate their level of experience treating DCIS or include their name when they responded to my questions about radiation, but the forum is legit). 

AnneWisc, I am glad to hear that your RO was willing to listen to you and is willing to make an effort to accommodate your needs. CTMom, I'm glad your RO knew how to do prone radiation.

This forum has been a great source of information and I am grateful for it.

Shayne

Research your area - see if there might be someone who does Brachy before you dismiss it.  You might still be able to.  

Id keep asking the questions until you get an answer....or find another doc who understands you.  You need to make informed decisions and be heard.  

Sounds frustrating.....big hugs to you!! 

CTMOM1234

maize - There are only 2 reasons I can think of why you wouldn't be able to have prone rads, and the first is a shame, and the second might not even be true.

Reason 1: Undereducated ro. That's an easy one to fix, change drs. I went to a premier place and my ro was trained at another premier place (sloan-kettering). She didn't even flinch when I mentioned it, but it wasn't part of the little intro to radiation talk that I was given by her medical assistance, and the rad techs initially seemed a little uncertain. It makes so so much sense to have prone-position rads, away from the lungs and heart, and an added bonus is that you are much more private (not exposed) than face up.

Reason 2: While researching the prone position before my initially meeting with the ro, I'd read a study that said that a woman must meet certain breast physique criteria -- something like, and I'm paraphrasing, hangy breasts (haha). Well, I did nurse my children and I'm a C-cup, but I really don't know if this even mattered. 

I was absolutely terrified of rads., way way more than the lumpectomy. And I'm in my 40s with hopefully a long life ahead of me, so I certainly wanted to minimize long-term effects. But the statistics for my personal medical situation were just too convincing to take the risk of not doing whole breast rads and also boost treatments at the end. And I sleep well at night, that's important, because whatever treatments were all accept or reject, it is ultimatley our decisions and we must find good inner peace with that. 

maize

Shayne, CTMom1234,

Thanks to both of you.

The secretary at the center had never heard of prone radiation. She didn't know what I was talking about, so I told her what it is.

I made an appointment to ask the RO about it and to ask other questions.  

There is another center not too far away where they can do that type of radiation.  Their article on their site says they do that for "pendulous" breasts or in patients who have very large breasts (not something I have--but I used to wish I did). Don't know if they'd consider giving me treatments there.  My breasts are not large but they probably would be saggy enough to fit through the hole to get zapped.