IMRT/Tomotherapy vs. conventional radiation treatment

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MaryNY
MaryNY Member Posts: 1,584

I'm currently undergoing chemotherapy—I've had the first of four treatments with dose-dense AC. If everything goes according to schedule, I'll be finished in the middle of December and expect to start radiation in early January.

I made appts with two radiation oncologists, one uses conventional radiation treament and the other uses tomotherapy/IMRT. One the face of it, tomotherapy sounds like a better option since they say radiation can be more precisely targeted thus avoiding damage to nearby organs such as lungs and heart.

I'd love to get input from others who had these two choices and why they chose one over the other.

Comments

  • pj12
    pj12 Member Posts: 25,402
    edited November 2009

    I did my RT at my local hospital and they do IMRT so it was not a decision I made, rather what was available to me.  My hospital is very proud that they practice a state of the art technique.  I have nothing to compare it to.

    Having said that I am glad I had IMRT.  The concept appears great.  At 5 months post RT my skin and breast are pretty normal in appearance and size.  I do know one spends longer time on the table with IMRT... daily CT scans and aligning issues take time.  There were a few days my treatment time was nearly an hour... the radiation was a minute but prep was time consuming.

    Also, my insurance considered part of the daily charges as "investigational and not medically proven" and denied about $200 a day of the $1000 a day fee.  Fortunately the hospital writes off that portion of the bill but I would certainly ask about  that.

    Good luck!  I found RT very stressful but physically not terrible.  Some skin problems but they resolved quickly.  More mental than physical.

    Pam 

  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    Thanks Pam.

    I'm glad you told me about the time involved. When I asked about that, I was told it would take about 15 minutes. But based on what you said, that is probably a best case scenario only if alignment is done quickly. 

    During treatment do you have to lie with your hands behind your head? Is so, was it difficult/uncomfortable to maintain that position?

    What skin problems did you have and did they offer any remedy for it? I was cautioned about burning because I have very fair skin.

    I was told that the main side effect of either type of RT would be fatigue. Did you experience a lot of fatigue?

    I was also wondering about insuranace copays for radiation therapy. I'm wondering if there will be a copay due every day for the duration of treatment, which will likely be 30 treatment days. With Aetna, my usual copay is $20, so if I had to pay every day that would be $600.

  • pj12
    pj12 Member Posts: 25,402
    edited November 2009

    Good AM, Mary,

    It was suggested to me that my TX would take 15 minutes... it  was almost always 25-30 minutes, with some days much longer.  Very rarely it was quick.

    Yes, the position was with arms looped up above your head.  Not painful, but the tension of holding the position for long periods made me tremble.  I was always able to hold still when the radiation actually started though.  I found holding something in my hand that I could squeeze helped.  I just could not relax.  If I were doing it again I would ask for xanax and take one prior to treatment each day.  Really... and I never have taken anything like that in my life!

    Also it was freezing cold.  I learned to dress very warmly from the waist down.  Trying to counter the nude from the waist up situation.

    I don't know why some women burn more than others.  Fairness seems to have little to do with it. I had 26 regular, 8 boosts.  While my skin tanned and was sensitive from about TX # 10, I did not blister until about TX # 23.  If you are heavy breasted the skin in folds and creases is more susceptible to sores.  Rather suddenly I developed gaping splits in the skin under my breast but the weekend (a break in treatment) came along and they healed almost as fast as they came on. I tried to wear a bra the whole time but finally could not toward the end.  Wore clingy tank tops that I could tuck under my breast to keep skin from touching skin. Great look :)

    This sounds weird but if I did not shower before TX and get all residue of creams off I thought I could smell a sweet burning odor.  NO ONE else says that!!! Just me.  Aquaphor is highly recommended but I could not seem to ever get it rinsed off adequately.  I stuck to clear aloe.  But... when I had skin splits the aquaphor healed them fast!  But so goopy :(

    Fatigue?  I napped one hour every day and went to bed early.  I don't work so had great flexibility. I was never so fatigued as I was stressed and anxious.  I ended rads in late June... so am now 4 + months out.  I am not as strong... but I walk 3 miles a day and keep house.  I walked all through radiation... felt it was part of my  recovery.  I take Arimidex so that may contribute to my not feeling 100%.... but I would say I am 75%.  Honestly, I can do anything I want, I just don't want to do much.  

    I have read here that insurance can require a daily co-pay.  Mine does not work like that so I do not know for sure.

    I did not have chemo.   Most people say rads are a cakewalk compared to chemo!  You are going to do fine.  Please don't hesitate to ask anything you are curious about.

    Pam 

  • linn56
    linn56 Member Posts: 210
    edited November 2009

    Mary, I have Aetna too. I do NOT have to pay a daily co-pay. It is considered an ongoing treatment, not like seeing a doctor for something new. I see the radiation doctor weekly and I also do NOT have to make a co-pay.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    Linn, that's a relief to know there won't be a daily co-pay.

    Pam, I'm not looking foward to six long weeks of radiation. Everyone has said to me "it's no big deal" but it sounds like it is. Chemotherapy is no picnic but it's just one day every two weeks and after an initial few hellish days, I had a good 8-9 good days where I could forget about it. 

    You said you don't feel as strong now. Do you think it was the radiation that sapped your energy?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

       I was checking out IMRT and radiofrequency ablation before and there were several women on the boards who were very helpful in giving me info from their experiences.  Would you like me to have them contact you?....I can go through my old PMs.  I heard a woman onco/radiologist speak about the procedures and then went for a cons appt with her and they really sound like good methods of treatment to me, but two oncologists told me I had too many mets in too many places for it to be truly beneficial for me.  I think if I am not mistaken the IMRT involves less time that traditional radiation treatments and there is less burning and they are better able to control the area that is actually radiated. 

  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    Hi Marybe: yes, I would love to hear other opinions. I think IMRT might actually involve more time per session as they do a CT scan every day in order to more precisely locate the area to be irradiated. Not sure about the difference in burning. I'm very fair-skinned so less burning would be a plus.

  • pj12
    pj12 Member Posts: 25,402
    edited November 2009

    HI Mary,

    I'm not sure why I don't feel as strong as usual.  I am ashamed to admit it might be more mental than physical.  But having said that... I have always been able to move a piece of furniture or carry something heavy upstairs, etc.  Now I can still do it but have to plan a little better.  I can't blame it on one aspect of my treatment, maybe just a combination of all the assaults to the body this year. I also had knee surgery in the middle of rads so that slowed me down some.

    You are going to do great.  I was, vainly, a little worried my treated breast would end up smaller than my "good" breast.  I had read in large breasts there was more shrinkage due to higher doses of radiation to get to the tumor site.  (my tumor was deep to the chest wall almost)  As it turns out my treated breast looks better than the other... it is fuller and firmer, definitely not smaller. Don't know if I can credit IMRT for that but glad I do not have to wear padding to have a balanced appearance.

    Pam 

  • ddlatt
    ddlatt Member Posts: 448
    edited November 2009

    I had two months of tomotherapy (June and July 2009) after my bilateral mastectomy and four months of chemo. it was an amazing experience and i'm so grateful for tomotherapy. it's much more precise than conventional radiation and much more skin-friendly. i had no skin issues to speak of, only itching, which is common and easily relieved with aloe vera. i was never in the tomotherapy machine longer than 15 minutes, including the daily CT scan, and for the bursts at the end of treatment, it was only 5 minutes. i had a total of 36 sessions. it wasn't uncomfortable at all to hold onto the bar, and the staff put a very warm blanket on me each time, so i was never cold. i would be glad to talk to you more about it at deborah.lattimore@gmail com or you can read all about my experience on my blog: www.ddlatt.blogspot.com.  i rarely read the breastcancer.org boards, so email is the best way to communicate. if you have tomotherapy in your hospital, consider yourself very lucky, because there are not that many available yet in every city. i am very, very grateful for it. my friends who were going through conventional radiation at the time had far more skin issues and also mapping on their body. with tomotherapy you only have the initial three tattoos, but no mapping.

  • Alyad
    Alyad Member Posts: 817
    edited November 2009

    Hi , I had tomotherapy- 25 treatments. My understanding was I was a candidate bc my bc was on ly left side , so they were more concerned about avoiding my heart. A friend also had left side but had a TE instead of the TRAM recon and she wasn't a tomo candidate fwiw.

    it does take longer as you get a CT scan each time. I laid with my arms up and bent and head to the side, I did get a crick in my neck often and found it hard to hold the position some days. on average I was in there for about 45 min or so. I didn't have a copay every day. I burned fairly badly, I am fair skinned fwiw. I posted some pics of the burn at its peak on the pic forum in the wellburnt section- pm timtam for access if you have been here awhile. my user there is Doodlebug there.

    it also costs more- my case manager said twice as much as regular rads.

    I also had a mold that went over me and latched down on either side- like a tube top. I got warm blankets and had one over my arms too- ask for this- its nice!

    I didn't burn too much til the last week- I wore camis until the last few days when all I could handle was soft cotton tshirts. I continued to get more burned for about 10 days after my last treatment and then I got better slowly for another week.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    Thanks Alyad for sharing your experience. I will contact timam for access to photos as I have no concept of what the burning it like. But it does seem to be the SE mentioned most often along with fatigue.

    I don't know whether to be concerned with cost. My insurance with Aetna but now paying COBRA as I was laid off in January. I pay insurace directly to my old employer. They usually review rates and providers annually. The end of Nov is the end of year with Aetna policy. I have cost them so much in the last year, I'm just keeping my fingers crossed that they don't try to drop me or move me to a more expensive policy. The COBRA subsidy also runs out this month, so I will be back to paying full premium in Dec anyway unless the subsidy is extended. 

    Did you use cream or anything to lessen the burning?

  • Alyad
    Alyad Member Posts: 817
    edited November 2009

     I think my level of burning was above average- so don't let those pictures scare you. I used the aquaphor they gave me throughout treatment- when I started getting itchy they gave me silvadene and rx strength hydrocortisone. They helped some but I was still fairly miserable for awhile. I also used a mixture of vitamin E and emu oil- it seemed to help. It seems like when your skin is starting to break down keeping it lubricated helps. I read somewhere less people getting IMRT have skin breakdown than those getting regular rads, I guess I just got lucky. My rads onc did say he liked to see a good skin reaction so he knew it was working- I got pink right after the first couple treatments but mostly stayed at that level for about 4 weeks, then the last week the skin starting breaking down.

    I am not sure how much my having a TRAM influences how the skin reacts- the skin broke down around the scar and I got a big fluid filled blister one day that then broke open- since the TRAM breast has no sensation- that part didn'tcause any discomfort.

    fwiw, any one having radiation on a TRAM recon- I have seen some significant shrinkage in the reconstructed breast- in my case , this is a plus as it was too large- it is still larger than the other one but not by as much and I feel closer to symmetrical. Another seeming bonus of radiation is my scars all flattened out a lot and are more even in color and the color difference between the circle of abdominal skin and the rest of my breast is not that noticeable bc both have a little permatan. my radiated side is tanner, but I don't have a distinct line down the middle so it doesn't bother me. I do have a distinct line in my armpit but I'm not a big tank top wearer anyway and I think it will fade over time.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    Alyad: the radiation oncologist did mention the fact that radiation does help to heal scars or make them less visible. Good to hear that radiation led to better symmetry in your case. I suppose the PS planned for that.

    Is the skin reaction confined to the irradiated area or does it go beyond that? 

    Someone mentioned to me months ago, the after radiation one becomes extremely sunsensitive and has to avoid sun. Is that true? I'm not a sunlover anyway, but do like to walk and if I have to start smothering myself in sun protection lotions year round, that would be a bummer. Maybe the sun sensitivity is only during treatment and for a short time after.

  • NannaBaby
    NannaBaby Member Posts: 510
    edited February 2011

    I am currently doing tomo and it's fine.  No complaints.  Can't compare to conventional.  I am in and out within 30 minutes.  Includes walking from parking, changing, set up, ct scan, treatment, and changing/leaving.  I am doing left side.  More precise, less risk to lung and heart.

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