How long should it take for them to get it right?!

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Raili
Raili Member Posts: 435
edited June 2014 in Radiation Therapy - Before, During, and After

I'm wondering if this is normal/common, or something I should be concerned about.

I had my radiation simulation on Friday (e.g. they took films) and just had my 4th radiation treatment.  The staff seem to be constantly questioning/doubting/checking what's going on with me, and I'm a little concerned!  Today was the third time in five days that they've taken films!  First they took films on Friday for my simulation, then on Monday, they had to re-do the films because I had been "so tense" on Friday (!?).  Tuesday, the techs called in the physicist to "check the field," and all 3 of them stood there staring at my chest in a "hmm" kind of way, saying things like, "I think it's okay.  Yeah, it's okay."  Yesterday, the techs called in the radiation oncologist to check the field, and again, they were standing there staring and poking and debating.  Rad. Onc. asked, "Should we use the wire?" and one of the techs goes, "It's only her 3rd day!!" and they thus decide not to use the wire - whatever that means!!  (I had flashbacks to my wire insertion pre-lumpectomy, and was freaked out for the rest of the treatment!  Rad. Onc. later told me it would be a wire ON my skin, not IN).  Then today, the techs called rad. onc. in AGAIN to check the field, and his comment to them was, as he stared at my chest, "Oh yeah, I see what you mean."

WTH?!?  Is it NORMAL for my treatment to be continually in question for 5 days straight?!  I asked one of the techs, and she said they're "Just trying to get things just right," and that the rad. onc. "modified the field," and once things are "just right," they'll only be doing films every 6 treatments.  Does this sound familiar/right to you, or should I be worried?  Why do they keep radiating me if things are NOT "just right" yet? :(

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  • hymil
    hymil Member Posts: 826
    edited March 2010

    You didn't say if it's chest wall or axilla they are doing; i'm wondering if like me you have some soft tissue swelling so they might be querying whether the markers are in the right place - was your lump in one corner of your breast so the field is maybe deliberately off-centre? My central tatto dot certainly doesn't look symmetrical to me, although they took ages fixing it, but that's probably just cos i'm now very lopsided around it! Doing the films wll let them locate with permanent structures (ribs).

    Good luck

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  • Raili
    Raili Member Posts: 435
    edited March 2010

    I had a lumpectomy and 2 reexcisions - but breast shape looks the same as before.  It was a 1.5 cm tumor close to the middle of my breast, plus 3 cm of DCIS very close to the tumor.  I've healed really well.  Only had 3 sentinel nodes removed, no infections, swelling, etc.  They are supposedly radiating only my breast, not under my arm.  My tattoo is about a half inch to the side of my areola (side closer to my sternum).

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited March 2010

    Demand answers to your questions.  Make them prove they are doing it right.  I went through similar, didn't get answers to my questions and wound up wiht a lot of damage from over-radiation.  Do not let them irradiate you again until they PROVE to your comfort that things are correct. 

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  • hymil
    hymil Member Posts: 826
    edited March 2010

    It doesn't sound to me like you are being treated with respect, dignity and appropriate explanations - are these techs fully qualified or still in training? or is the rad onc such a monster they are afraid to do anything without double-checking with him first? Glad you have healed well though - you're three weeks ahead of me, i start after Easter.

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited March 2010

    I wonder if by wire they meant the stick thing that tells how much radiation you are receiving?  They started to do that today and then stopped saying how I hadn't gone a full week yet.  At anyrate, it doesn't go in you, they just tape it on you.

    Are you using the breathy thing?  If not, maybe they are thinking that they ought to be using it because of how you are presenting on the films.  The breathy thing is supposed to move your heart out of the way of the radiation.  It doesn't hurt though the nose clip is annoying.

    That said I agree with NativeMainer--you have a right to answers, you aren't a child.  Do you have any alternative place to go for treatment? 

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  • Raili
    Raili Member Posts: 435
    edited March 2010

    Thanks for the support, NativeMainer, Hymil, and 3monstmama.  My plan now: I'm not getting back on that table until the radiation oncologist has answered my questions.

    The rad onc and the techs are all very experienced, have been there for years, etc... so I don't get it.  But you're right, they shouldn't be talking "over" me so much without explaining things TO me.  So far even when I've asked direct questions, they've just kind of brushed me off.  One of the techs today cheerfully asked me, "So, are you a college student?"  NO, I graduated 9 freakin years ago and I'm 31 years old!!  

    I don't have anywhere else to go, unfortunately. :(  The next closest rad. onc. that's in my hospital network is over an hour away, and I don't have the gas money to do that trip 29 times...

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  • C130sunshine
    C130sunshine Member Posts: 174
    edited March 2010

    I agree with what everyone said...especially if they say things like "I think its OK"....WHAT IS THAT ABOUT.  I would sit down with the team to tell them your concerns.....before you get onto the table.

    When I went through radiation....yes, it took awhile for them to get me into position (sometimes I felt like it took for ever).....when I voiced concern they said they wanted to be 100% sure I was in the right place before they "pushed" the button.  I would get x-rayed every couple of weeks....to make sure the landmarks did not change (due to swelling, etc). 

    One thing I have learned is that you have got to trust your treatment teams from the doctor all the way down to the tech. 

    Best of luck....let us know what happens.  Sending you lots of BIG HUGS

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  • Raili
    Raili Member Posts: 435
    edited March 2010

    Thanks, C130sunshine!!  I'm going to call the office this morning and ask if the rad. onc. is available to meet with me before my treatment today... if he's not, well, I'll skip today and try again on Monday.

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  • somanywomen
    somanywomen Member Posts: 872
    edited March 2010
    Raili...I almost jumped off the rads table and broke my neck (did not realize that the bed actually rises during treatment) because they let a new tech (who I was assured knew my treatment plan) do my rads and she did it wrong!!!...You have to question everything, it is rediculous that they do not have our treatment down before they start experimenting with our rads...What the heck are the simulations for???...I had to question so many changes in my rads and asked them to notate when I felt something was not right....To my amazement they did infact notate on my records the days in question...I asked for a copy of my treatment, and recieved after many requests for them a weekly update with treatment and notes..I have even questioned as to why I had been charged for the day the new tech did my treatment wrong....Keep notes and ask for notation of questionable treatments on your med records....good luck..and trust you gut!!!!
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  • pj12
    pj12 Member Posts: 25,402
    edited March 2010

    I don't think there is a solution to this problem. So many of us have been through it! The problem is that "they" can tell us anything and we have no way to know what the truth is. My first two weeks of radiation were horrific. Every day something went wrong... the machine shut down, the therapist failed to have me do the breathing thing, after one treatment they totally redid my simulation, the hospital power went off. I was just undone about the whole thing. I told the radiologist that "I had no confidence that I was getting good, even safe, treatment." He tried to reassure me  but what did I expect him to say? 

    Was your tumor in your left breast? Was it on the middle side rather than the lateral side? That makes things trickier, I think. 

     I think it is fair and reasonable for you to ask what is the problem? Why are there doubts? Is it that the field is too close to your heart? Or is too much of your lung involved?  If there are other patients in the waiting area, I would ask them if they are having the same problems. I quickly learned one of the therapists was more particular than the others and I arranged my appts so I mostly got her.

    At least let them know you are concerned and upset.

    Finally, I SURVIVED it!  Things are mostly back to normal. I hope I can say that years from now... and you too.  

    pam 

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2010

    I just reread all the posts and see that your tumor was midline... is it in the left breast? That may be the cause of all the concern. If so, they should tell you and tell you what they are doing to protect your heart.  It may be a good thing that they are being so careful and precise but they should tell you.

    pam 

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited March 2010

    Raili,

    I believe if the location of your cancer was midline or on the left breast, then you get the breathy thingee [have no idea what to call it] because that moves your heart. At least thats how it works for me---my dcis was in the left breast and my incision is on the left and I get the breathy thingee.

    I'm so sorry you don't have more options on where to go.  That makes it so hard.

    sending lots of virtual hugs and dark chocolate---keep us posted.

    PS:  I know the college student comment was annoying, I got them at 31 and they were annoyingYell but I have to say, I miss them now!!!!!!!  If I could get someone to card me buying beer or wine, I'd probably kiss them. Laughing

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  • June2268
    June2268 Member Posts: 1,202
    edited March 2010

    I have no breathy thing and mine is on the left side as well.....looking at my breast this would be 3:00-5:00 o'clock.....should I be concerned???  There are 3-5 tech all the same ones and I am in and out pretty quick....they also told me I need x-ray once a week....it seems like 2-3 days out of the week I see a nurse oncologist as well as the doc......this is getting old but I understand the need for this.......

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2010

    June,

    The breathing thing is called respiratory gating. I really don't know how commonly it is done. My facility practiced it and my insurance would not pay the part of the daily portion of the bill related to it ($200. of the total $1000.). BC/BS called it investigatory. Fortunately the hospital did not make me pay for it, they wrote it off. Apparently the machine could tell when i took a deep breath and held it, thus expanding my chest to move the heart down and the tumor bed up into the radiation field. I have no idea if it is safer or not... apparently BC/BS does not think so. :-)

    pam 

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  • Raili
    Raili Member Posts: 435
    edited March 2010

    UPDATE:

    Everything's okay, whew!!  I went in a few minutes early, and told the receptionist I needed to talk with the rad onc before receiving any more radiation, and she got me into his office 10 mins later.  I asked him why there had been so many questions about my treatment every day, why he and the physicist had been called into the room 3 times to check things, why I had been filmed 3 times in 5 days, etc... I asked flat out, WHAT'S GOING ON?  He explained it all, and as it turns out, he modified/tightened the radiation field in order to get it even further away from my heart.  My simulation was done by a different rad onc, who was covering for my rad onc while he was on vacation, and the issue was that he couldn't just unquestioningly accept the plan that she had set up for me - he needed to check everything himself, and modify the plan as a result of that.  And he showed me the images they took of her radiation plan, and the edge of the field is very very close to my heart... then he showed me the images of HIS plan, which is a more comforting distance away from my heart.

    So, I agreed to continue with radiation.  I was GLAD to hear/see that all of the questions, checking, and modifications this past week have been to increase my heart's safety.  But I wish he had TOLD ME all of this DAYS ago...it would have saved me so much stress!!  As I was standing up to leave his office today, I said, "Thank you for explaining all of that.  I had really been getting worried and concerned!"  He replied, "I know, I could tell by your face the other day that you were worried and would have questions."  GEE, THANKS!  You just take a mental note that I look worried, but don't do anything about it??  I'm glad this guy is good with his machines, but he has no freakin people skills.  But after this conversation with him, I've realized that he and the techs were not purposefully keeping information from me, as I had previously feared - I thought he'd been talking in code with the techs while I was present so that I wouldn't understand what was going on, because they were having problems and he didn't want me to know that!  But now, I don't think that was the case.  He was quite forthcoming with information once I directly asked for it.  It just doesn't occur to him to share it, because my guess is that he's way more oriented to his machines than to his patients.  So, the lesson to me, is: don't assume doctors will share information...ASK!  Ask every single question I have, and keep speaking up!

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  • C130sunshine
    C130sunshine Member Posts: 174
    edited March 2010

    I am so glad that you were able to get your questions answered.  Sometimes medical people forget that the rest of us have no clue what they are talking about.  Please don't ever feel like you should not ask questions.....actually most like it when patients ask questions.....it shows them that you are interested in your care and what they are doing. They like it when you want to be part of the team.   When I find out one of the team has written an article I ask if they can provide me a copy to read.....now that really surprises them. Wink

    KEEP ASKING QUESTIONS!!!!!  And let them know how you feel.

    My breast cancer was on the left side about about the 5 o-clock position....so I was conerned about the heart also when I got rads.

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2010

    So glad you are reassured and that your doctor is doing the best for you. Good luck.

    pam 

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