How Does Radiation Plan Get Determined?

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macdebbie
macdebbie Member Posts: 171

I met with my RO about a month ago, mid-Aug, before I even met with my BCS. My BCS's team wanted me to pick my "team" prior to my surgery so that everyone would be lined up and in the know as they presented my case to the tumor review board, and then at hand-off after surgery for the next step.

When I met with the RO we spoke in very general terms and I asked some basic questions about the different types of radiation. I asked about partial breast radiation, and she said I "might" be a candidate for that. I asked about Brachytherapy and she explained that to me, and told me I would be a candidate (based on the info she had at that time) for hypo fractionated - 4 weeks/5-days a week and a "boost" week. I don't think I inquired about Intraoperative therapy, but I did ask about Proton therapy and she downplayed that and told me they were mainly using it for brain cancer and prostate cancer, which I now know is not the case. Obviously where I am going doesn't have it.

I had my surgery Tues (lumpectomy) and they path report was good - Stage 1a, no lymph node involvement, 3mm tumor, margins clear. So I would presume from what the MO told me when I did my consult, there will be no chemo and the next step will be radiation therapy.

She told me that the next appt. would be a "planning" appt, which they would map out the radiation sites with me lying on a table, etc. Is this the time that the RO also goes over the path report and what the options are - partial breast radiation vs full, etc. or do I need another appt. for that?

I am still have proton radiation in the back of my mind, as I want to do as little harm to my body as possible, especially considering that my cancer was small and non-aggressive and no lymph node involvement. The last thing I want is to get another cancer from the radiation or life-long heart/lung issues, and I have read that proton radiation is less damaging. The issues is that I do no live near a proton center, and would have to travel back home to Boston and stay with relatives for 6 weeks, and travel the hour each way daily for proton treatment. I'm not keen on traveling anywhere right now due to COVID, as even though my husband and I area vaccinated we are both at high risk for complications should we get it. I don't know either if my insurance would pay for proton radiation therapy and don't know how to find that out, as when I called to inquire, they said I would need the exact CPT codes that it would be billed under, and I don't have that, and probably wouldn't get that without a consult in Boston, which means another trip. Ugh...

Feeling lost here as to how to proceed with the next step.

Also, will the RO give me recurrence stats depending on the different types of radiation - i.e., if they do partial breast or full breast?

Comments

  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited September 2021

    Macdebbie, I remember well how stressful it is trying to figure out radiation!

    First, the good news is that, because your cancer is in the right breast, the risk of damage to your heart is very low. And I would not get hung up on proton. First, proton is rarely used in right-sided breast cancers. Second, its advantages over photon are theoretical, but as yet unproven. There is an ongoing trial, called Radcomp, to try and determine just that - whether proton is actually better.

    Since you had a lumpectomy, radiation is pretty much a given. Still, you deserve to feel comfortable with the decision, and now that you have pathology results it seems understandable to want another session with your RO to know exactly what your plan will be and, yes, how it effects the odds of recurrence. My experience was that the RO was not present during the set-up "marking" session, it was a resident who handled it. It may be that your RO intended to have another appointment with you before the set-up and your MO didn't realize it. By all means, though, don't be shy about asking for clarification about it all, including proton.

  • kksmom3
    kksmom3 Member Posts: 183
    edited September 2021

    macdebbie, I have your exact same stats and am nearly 3 years out. I had a R sided lumpectomy with hypo fractionated radiation. I wasn't a candidate for the intraoperative kind, and I don't remember why not, as that info was in the flurry of all that I was learning. I think? is that it was because I am too small busted. Anyway, I had 16 days of whole breast radiation, and 4 boost treatments, 20 in all. I did really well. I never got tired, I exercised nearly everyday, and I did get red, but it was not terrible. Very doable.

  • Esther01
    Esther01 Member Posts: 294
    edited September 2021

    Hi Macdebbie,

    My mapping appointment took about 45 minutes, and then the RO took one and a half weeks to formulate the best exact plan for my radiation. They then they had me come back in to go over it with me and my 33 sessions began. It was so comforting to see the plan in 3D color and have them show me that my heart and lungs would not be in the path of the radiation, and what exact amount of radiation was to each shaded area. Yours will be on the right though, as mine was on the left, so that is helpful for you. I am not worried about a secondary cancer from radiation. I know that is a small percentage likelihood, and I am already doing a ton of things to make my body as inhospitable as possible to another cancer growth. I have peace about having done radiation. I also chose the stickers (tape over pen markings) instead of tattoos.

    Not sure if I mentioned to you, I did not stay with the RO to which I was first referred. I found a center on my plan that I knew would have better technology, so I switched to that place the same week as my surgery. I knew it would slightly delay me, but the peace of mind and confidence in the new technology was worth it. I don't know that it actually did delay my start date by more than a few days.

    Oh, and when you go in for your mapping, try to lie down in the most comfortable position possible, including your spine and legs. If you are lying on your back, your arms will be up over your head and they will get numb and fall asleep. But they had my legs shifted to the side in this awkward position at mapping, and I was dismayed to learn that because I was mapped in that position, I was going to have to be moved into that same weird leg pose for the next seven weeks. They do have warm blankets, so don't be shy about asking for those, too.

    Love,

    Esther

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