Anyone with whole breast radiation also getting burned on throat

Options
Calli0p3
Calli0p3 Member Posts: 21

Hey there, me again with another really specific question...

So the way the radiation treatment center works where I am being treated is they have two rooms for radiation. The room where I get my treatment is usually watched over by a guy we'll call Guy. Guy is good.

This is my second full week of treatment. My first week was just two days, and was handled by a tech who we'll call Sally. After being treated by Sally, who lined me up, I got the hiccups and my throat hurt. The second week, being lined up by Guy, no neck issues, no hiccups, no sore throat. Thought the throat thing was an anomaly.

Now, it's Sally again. I asked about Guy, and she said they switched off between rooms. And, today, my throat is sore (it really tingles and burns, it's a little harder to swallow), and I have the hiccups. When I was changing from the gown to my street clothes and was putting lotion on my chest, I noticed that my neck looked sunburned. I don't go into to the sun from my garage to the hospital's garage, so I didn't get sunburn- and I wasn't burnt this morning before treatment. I have four more days before I can have Guy again. Also, she didn't have me lined up quite as high as Guy does against the mold.

Has anyone else had their neck/throat get involved in radiation treatment for right whole breast (supposedly) no lymph nodes? Has anyone had differences in treatment between techs? Any suggestions about how to ask about it without pissing anyone off? I have to deal with these folks for another 12 days.

Thanks in advance for any feedback. I am grateful that I even have a place where I can ask.

Comments

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited July 2019

    They should be lining you up according to your tattoos or sharpie marks. The techs don't decide the range or strength of the beams. All of that is programmed into the machine before you start treatment; that's what the set-up session is for. The RO does all those calculations and it should not matter who the technician is. Even if the technician is from another facility and filling in, the session should be exactly the same as your previous ones. If you really think there's a problem, ask the oncologist or nurse to supervise a session.

  • Calli0p3
    Calli0p3 Member Posts: 21
    edited July 2019

    Thanks AliceBastable,

    The fact that all technicians should be the same was my expectation also. But I am experiencing this variation of symptoms. I would not have posted here if I didn't, in fact, really think it was a problem. However, the facility doesn't seem to do well with questions, I can try to broach it gently, but I am not sure anything will change. That's why I was asking here- just to see if anyone had had this experience before. I know that in previous threads for radiation therapy, there were folks who developed coughs, or had issues even with their thyroid gland, but they have long since moved on. So I was seeing if anyone currently active is also having this happen to them in any way.

  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited July 2019

    CalliOp3 - hi my throat is also getting red mostly on the left side. My throat also gets scratchy so I asked my techs about it. They said not directly radiating that area but radiation is like a flashlight there is some scatter. So while the skin may get a little red the thyroid would be unaffected. I see my RO tomorrow and will check with her and post again. My guys are great with questions. Hope that will help you.

  • Calli0p3
    Calli0p3 Member Posts: 21
    edited July 2019

    Oh my gosh GiddyupGirl, I would be so grateful if you could ask. I am worried about my esophagus being damaged, as well as my thyroid. I had a friend with esophageal cancer, and it was extraordinarily gruesome. Even if I only get scarring, it was scary to watch her suffer with what was initially only scars. I speak for a living, and really need to have a worry free throat. I also already have hypothyroidism, and it took years and years to get the dosage right and feel fine with it. I really don't want my thyroid to be damaged for no good reason.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited July 2019

    My collarbone area got red and itchy, but started to fade pretty fast after the sessions were done, in fact, even while getting the boosts. I had radiation to a wider area because of micromets in my sentinal node.

  • mom2bunky
    mom2bunky Member Posts: 189
    edited July 2019

    calliop3,

    AliceBastab is right that the area being zapped depends only on what the RO designated during the set up session. The tech's changing shouldn't matter.

    I specifically asked about my throat in the first weekly RO meeting because I was concerned since I've had a sluggish thyroid for almost 20 years and been on HRT for it. The last thng I wanted was for this to mess it up even further. The RO assured me that no, it's no where near the area being radiated and she reminded me again of what that area was. Any scatter? I asked. No. Once I finally got a tan line I could see very clearly that it's no where near my throat. I had zero coughing, hiccuping, sore throat, or other issues.

    That's just my experience. It's none of my business, I only want to help you, but you've had so many issues and you've tried to be so nice. I'd have stood up by now insisting on seeing the RO immediately, or at least at your very first weekly with him/her, share your concerns, insist on your concern that you are being radiated improperly and have the conversation. You can be assertive and still be nice. They ought to be answering your questions. And even if you do piss them off, they still have a responsibility to treat you properly. I think you said you're small and it may be that you don't fit the machine? I've never heard of this, but it seems to me there has to be a solution. To my mind it is beyond ridiculous and downright malpractice to radiate something unnecessarily, if that is in fact what is happening.

  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited July 2019

    Hi Calliop3: really like my RO she's always happy to answer questions. I don't know what your breasts are like (that's a weird phrase) however she says that breast tissue goes a distance up your chest and under your arm (actually for some into the base of the armpit). Even though I am having my lymph nodes radiated she says not touching my thyroid at all. Says my sore throat can be from dehydration even if I am drinking a fair amount but will not have any permanent problems. My throat feels tight and she explained that the radiation causes inflammation all around the area of the chest that can move up into throat muscles and that will cause tight feeling but that the throat is not being radiated so don't put it on my list of worries. You should try talking to your techs and your RO again. You should be comfortable with them. I actually changed my RO to another in the same hospital and it really worked out well. hope the info helps.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited July 2019

    The size of the machine should make no difference at all. If you're referring to the bed thing you're on, that's taken into account at the set-up session, with the knee block and other positioning.

  • Calli0p3
    Calli0p3 Member Posts: 21
    edited August 2019

    Thanks mom2bunky- I appreciate your kindness. I do, in fact, have a tan up to my clavicle, but it is much darker further down my chest, so I think it's scatter. I also have a tan along my side and up into my armpit, where my lymph nodes definitely are. It's pretty clear now by the tan lines that they are doing my lymph node too, at least under my arm and almost around to my back.

    However, I have been doing some research and there has been a recent study done that reports radiating the lymph nodes, regardless of tumor involvement, does increase the chances of not getting metastisis later. And if that is what the RO is going for, despite my MO or Surgeon's recommendation, she should have told me instead of lying. The tan lines don't lie. I am having some swelling and tingling in my right hand at night, but it is summer and really humid. I really dread lymphedema.

    I also learned that, at the hospital system where I live, that has completely monopolized the area, the ROs HAVE to use "pathways", which is a branching logic form that they simply punch in the patient's pathology and get the radiation plan from. It takes the doctor out of the equation, WE could do it. There is no leeway to suit an individual, everyone simply gets what the computer spits out, regardless of circumstances. So even if my RO had wanted to tailor my treatment for my needs, she isn't allowed. Also, there is an IMRT room at my radiation center, but the tech said that, honestly, although it would be great if everyone could have perfectly modulated treatments that greatly reduced side effects and only hit the exact area of treatment- insurance will not cover it. The insurance practically everyone has in the area is also tied into the hospital system that monopolizes the area- yes they are one in the same, if you want treatment at those centers, you have to have *their* insurance, and then that insurance limits your care seamlessly).

    Wednesdays are the day they take images and check to be sure I am in the correct position, and lo and behold, they moved me up a little. No biggy, it was just a few days out of twenty that I might have been a little low. I'll take that. But I am glad that they do these resets every week- even though that is flatly taking a CT scan of your chest every week for the length of treatment.

    AliceBastable, Thanks for the reassurance about the machine. I had a feeling that alignment was wrong, and my area of radiation is too big, and was thinking, if it wasn't either a mistake or intentional, maybe it was related to the machine itself.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited August 2019

    talk to your radiation oncologist- I saw mine every week.

  • Calli0p3
    Calli0p3 Member Posts: 21
    edited August 2019

    Runrcb, thanks. I see my RO every week, but she is defensive and any symptom I mention other than burning skin or slight fatigue is met with "that has nothing to do with your radiation treatment." I am also learning that she is giving more than the current recommended standard of radiation for some reason, and irradiating my lymph nodes intentionally, when I signed a form before treatment refusing lymph node radiation, without explaining why either. Obviously I am just trying to survive here, but this situation is not okay. Thus, my repeated questions here, amongst women with more experience than I.

Categories