Summer 2015 Rads

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    What does the RO actually do? I had my initial consultation with him, and we made a plan. Is it the RO that actually does the calculations and such? Or are there other specialists who do that? I'm anoyed with myself that after pushing to get an appointment, now I'm scared to go through with it. I don't want to wait another 2 weeks, but I sure don't want cut rate treatment! I guess if all the RO does is make the plan, then I will be ok with not having him there. But if he is involved in the actual cooking process, then I want the head chef, you know what I mean?

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    >>Enjoying a quiet afternoon reading up on the life of Madame Curie?

    Nah, I thought I'd re-read Hersey's Hiroshima instead.

  • live_deliciously
    live_deliciously Member Posts: 346
    edited August 2015

    my RO programmed the plan then it was checked by the physicist. He was there for the first rad and then did some tweaking for the 2nd one. Then he checks the xrays they take each week so i think they are always monitoring.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015


    LBF - My understanding is that the RO designs the plan then works with the dosimetrist and medical physicist to bring the plan to reality. My RO checks each time there's a change (a simulation, a change to the treatment set up, etc.), checks the port films weekly and makes any adjustments.

    Why don't you call and talk to the RO or her/his assistant? You're entitled to that much at the very least.

    (My RO was on vacation part of my 2nd week but had let me know in advance and told me which of the other ROs was meeting with her patients that week and I was fine with that. I'd have been uncomfortable with her NOT being there at all at the commencement of my treatment.)

    Susan - "Nah, I thought I'd re-read Hersey's Hiroshima instead." That would certainly be very timely.

  • pwilmarth
    pwilmarth Member Posts: 235
    edited August 2015

    hello summer camp gals.

    Just completed 10 of 25 Rads treatments. Just some slight itching. A touch of redness immediately after treatments that goes away quickly.

    By the end of the week I will be halfway home!

  • april25
    april25 Member Posts: 772
    edited August 2015

    My RO wasn't always there, but there always was a physician floating about when RTs were going on. And if something new was being done--like the boosts--one would come in and check on what the techs/assistants were doing. I wasn't really bothered that my particular guy was there or not. I pretty much chose a guy from a short list that my BS recommended, and didn't check him out at all! I guess I trusted my BS a lot or something? Hmmm... But I rather figured it wasn't quite as important as the MO and BS, so I wasn't worried. And I am fairly confident in the clinics/hospitals they are associated with...

    Anyway, I gathered the RO was the guy who determined the whole plan for the RT. I asked him once how he determined what was done and he said he plugged a lot of info into a complex program to calculate (which might have been true, but it sort of sounded like he didn't like to be questioned! He's really friendly otherwise, though, so maybe he really didn't think he could explain it, or didn't feel it necessary... I figured I'd be getting his treatment anyway, so I wasn't bothered).

    My RO also met with me (pretty briefly!) every week to check how things were going. I had x-rays taken weekly and I figured he was checking that. I think that if I needed any prescriptions for anything, he'd be the guy to write those, but I didn't need anything, thankfully.

    ----

    Today was my last boost and last RT!

    They gave me a card signed by everyone there--the receptionist, nurse, techs/assistants, RO, etc, with nice encouraging comments. That was really sweet. And a certificate.

    I made an appointment to come back and see the RO there in two weeks for a followup checkup.

    My breast in the area of my tumor and incision is all pink. The tech said I'd probably peel there, but it looked pretty good. I had the no bolus boosts--just with the rads being shot through a metal (I was told copper) block that had been custom-cut by lasers in the proper shape. That's the area that's now pink. Both the regular treatments and the boosts seem fairly precise, given that I could really tell from the redness where they were being directed.

    ---

    Last night my sister cooked a sort of Creole Shrimp dinner and got me a cute little cake for dessert. I wasn't worried about celebrating this, but I forget how tough this can be on care-givers... I think she is very happy to be celebrating the end of my rads (and before that the LX and the chemo), since I was staying at her house all this time, basically since November/December!

    It's kind of weird to be heading back home and having time to think about and do non-medical-related stuff! I mean, I still have Herceptin every 3 weeks and some doctors appointments that will be continuing, but the cancer treatments have been nearly non-stop for so many months, this more regular life now seems a bit odd! --But I'm sure I'll get back to being used to it! It's amazing the things I can get used to! It took a LOT of getting used to some of it, but I did sort of just go with the flow after a while... And it was nice to have finishing dates, like the end of chemo and the end of RT to look forward to!


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    You're coming along nicely, pwilmarth! Thanks for checking in. I'm glad your skin's doing so well and hope your energy is holding up, too.

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    Yay, April!

    I've done 19 of 33 (28 regular + 5 boost). My PT actually exclaimed with pleasure when she saw how good my skin still is at this point. She's also happy about my current range of motion and lack of swelling or signs of LE. Me, too!

  • Darumama
    Darumama Member Posts: 135
    edited August 2015

    Congratulations April!

    The funny thing about the PS telling me that I had an acute radiation wound is that I actually thought it didn't look too terrible until she said that. Even with all the peeling. I guess you really don't know unless you have seen several other irradiated boobs to compare with (please do NOT read this as an appeal for pics ).

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    Congratulations, April!! I know it's been a long haul for you - being away from home so much must make it even stranger. I'm so glad you and your sister were able to celebrate and that you can return to your 'real' life! I hope the remainder of your herceptin infusions go smoothly and that cancer never, ever darkens your doorway again. Please keep us posted on how you're doing skin-wise and otherwise, o.k.?

  • pboi
    pboi Member Posts: 663
    edited August 2015

    Congrats April! I'm coming down the home stretch and will be leaving camp soon, 2 more days! 23 done, very pink, but no tenderness and skin intact. Hope I don't get the peeling too, but we'll see.

    Good news youre doing so well ksusan!

    PB

  • InStitches
    InStitches Member Posts: 80
    edited August 2015

    Ksusan, you gave me a much needed laugh. I think you have to have brass bonus to be at our Camp Idonwannaburn!

    It's actually kind of pretty, isn't it?

    Peace and healing,

    Nancy

  • InStitches
    InStitches Member Posts: 80
    edited August 2015

    Ksusan, you are one day ahead of me with the same plan. I have a total of 33 treatments and the last five are boosts. Today was my treatment number 18. Skin appears to be holding up great but the fatigue has hit me like a sledge hammer.

    Drinking lots of water and trying to get in 60 grams of protein every day.

    Sleep tight campers!

    Nancy

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    Hydrate! Hydrate!

  • SweetHope
    SweetHope Member Posts: 439
    edited August 2015

    Littleblueflowers, I totally understand your concern. But please consider that the RO only oversees your progression. You have a staff of professionals behind the scene who are making sure that you receive the proper dosage before you ever start treatment. In fact, one is a Dosimitrist. There is a Medical Physicist, Computer Programmer, Computer Tech, your Rads Tecs that you see every day, and I am sure I am leaving some out. Once the plan is finalized (usually in a week) you lay on the bed, the techs make sure you are properly aligned, but that multimillion dollar computer won't let any grays be released until all is correct.

    So that fly-by-night RO has very little to do with your simulation. In fact, he shouldn't be involved in the simulation at all...just in his office if you should need to ask questions.

    But since it normally takes a full week to do all the calculations on your treatment, I don't think it is unreasonable to ask for a week's delay to actually start when your RO is back. By then, I am sure many patients will have already used it. (But, I personally would want to be the first. No one else will ever get so much attention to details and so much double checking.)

  • BayouMama
    BayouMama Member Posts: 15
    edited August 2015

    Congratulations, April!!

    I have my first of four boosts today then done with radiation. I just developed more frequent pain in my radiated breast, it must be swelling somewhat or just tender and angry. My fatigue has reached the point that I ache in the evenings...sort of an overall ache like when you have the flu, lower back and arms and legs. But it's gone by morning. I'll ask the doctor about it this morning as its my weekly check in.

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    My RO inked the fields of radiation during my sim.

  • wpmoon
    wpmoon Member Posts: 270
    edited August 2015

    Radiated boob started having sharp, stabbing like pains in it last night. Still doing it now. I think it's because of swelling. My nipple is the most tender. I could deal with the burns and itchiness, but now this is just ridiculous. 12 more sessions to go, and then I'll be home from camp.

  • dragonista17
    dragonista17 Member Posts: 50
    edited August 2015

    Boyoumama and wpmoon: I get those sharp shooting pains, too. RO said it's related to the incision. They cut all sorts of tissues and nerves, so I'm feeling this in various areas away from the incision itself. This began I think around week 3 or so, I still have it but it hasn't gotten worse. I'm 2 days post rads, and today am getting itchy, and am very sore. Wondering when this will start to abate, or if the itchiness is a sign of healing, or whatever. If your pain continues/worsens, be sure to tell your RO. Hang in there


  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Sweethope, That's really good information! But....after my PFC bloodwork today, my MO recommended I wait a week to start anyway. I'm still a little anemic. So, new start date, with original RO (who I just love) will be Aug. 17. I was panicking at the thought of creepy little cancer cells crawling through my lymph nodes if I waited, but he said it just doesn't happen that quickly. He's good at talking me off ledges. :)

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    My PT says itching is a sign that you should moisturize/lay a cool damp cloth on the area. Failing that, I've had relief from Aveeno colloidal oatmeal in a cool bath.

    http://www.amazon.com/Sachets-Aveeno-Colloidal-Oat...

    My RO allow me a little ibuprofen, which helps with the soreness.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    I had the stabbing pains for the first time yesterday (and all night), after the first boost. The nurse today recommended ibuprofen as a change from the Aleve I've been using. We'll see. I know they are very, very common and there's no telling at what point in the process they'll show up.

  • FastWalker
    FastWalker Member Posts: 98
    edited August 2015

    What was in the air last night? I too had sharp nerve pains. Mine were mostly in my arm pit and down my arm (my lymph nodes are getting radiated). My nerves were ticked - my muscles were twitching/jumping in my arm, breast, upper back. (A small part of my upper back is also being radiated due to lymph nodes.) I could barely sleep. I do see some swelling so I am thinking of taking Advil tonight . . . I have also been having sore throats on-and-off and a low grade fever all week. I mentioned it to the receptionist before treatment yesterday and she told the nurse. (The nurse never got back to me, but the radiation techs said I could be treated.) I am wondering if this is related to the radiation. If I am still under-the-weather on Tuesday "doctor day" I will mention it to my doctor. . .I had treatment 18 today - 15 more to go. I'm getting my boost planning on Monday before rads. I can almost see the light at the end of the tunnel, but 10 years of Tamoxifen is standing there waving at me lol.

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    I wonder if barometric pressure is a factor?

  • april25
    april25 Member Posts: 772
    edited August 2015

    Thanks everyone! One of the techs called me today to tell me the little gift tower arrived (I worried about it yesterday); she really is so sweet! I seriously wished I could give them something more than just a few fattening snacks, but couldn't think of anything else! They all really made the whole experience much more pleasant than it might have been. They were all just happy, friendly faces that I saw every day... and made me not mind going one bit.

    I'm still at my sister's place. I could have left this morning, but lazed about. It's funny... I'm in no hurry to leave, now that I CAN... (plus, I have to wait until traffic gets better after 7pm anyway).

    It's kind of weird, but I'm going to be missing certain aspects of Summer Camp! But yes, it is very nice to have it over, too!!! --Hope you all are enjoying being back, too, and that the rest of you will be done soon!!!!

    ----

    So far, I've escaped stabbing pains. 'Hope something works to alleviate that. ugh. --Although the site does feel a lot more tender and bothered today than it has in the past!

    My boost area is still red and a little itchy... I'm going to be slathering aloe and calendula and Vit. E and stuff on it until it settles down...


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2015

    Fast Walker - my back was getting zapped, too, due to the s/clav radiation. The odd thing is that it is the OTHER side of my back that itches. At least I can safely scratch over there. :)

    I had a bunch of minor issues my first or second week - felt like I was getting a cold sore, low-grade fever, had gastro issues, etc. but none of it persisted. I think the body's a lot more vulnerable to every little annoyance during treatment and we feel things that wouldn't have had a chance of catching up with us in normal circumstances. I hope yours vamoose before the weekend. Try to take things easy during the weekend break from tx.

    I've had the rug burn feeling under my arm ever since the SNB so have gotten quite used to it. I'm not sure I'd ever get used to the stabbing aches...

    April, have a safe drive home when you do head out. That was very sweet of you to give your techs a gift. I've been trying to think of something but will probably settle for a card. Maybe I'll drop by with something later on, since it's near my home.

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    My default for schedulers, nurses, and techs thus far has been a big package of dried fruit and either chocolates or cookies.

  • klanders
    klanders Member Posts: 244
    edited August 2015

    Looks like I won't be joining summer rads after all. I just pulled off the stickers from my sim because of the additional cancer that was found on the PET scan after chemo. Now I'm scheduled for a full axillary node dissection on August 28th. I am anxious to get on to radiation and get things moving along after surgery. I've scheduled my SIM for two weeks after the dissection and I'm hoping to start radiation one week later. For those of you who did radiation after a full lymph node dissection - do you think I'll be able to raise my left arm over my head two weeks after surgery? My SIM is scheduled to take 90 minutes so I'm going to have to have my arm up for quite some time. I've already had two sentinel node biopsies on that same side and I have axillary web cording that restricts my arm a bit but my surgeon is planning on working on that for me so hopefully that will be resolved.

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    I'm sorry you're going through this.

  • Darumama
    Darumama Member Posts: 135
    edited August 2015

    klanders- I had the ALND but I didn't do the rads till 5 months later. For me it's difficult to separate the the mastectomy damage from the ALND damage, but I can tell you I wasn't even driving for over two weeks after my mastectomy/ALND. I also couldn't lift my arm much past my chest. Everyone is different, of course. I would speak to your surgeon about the timing if you haven't already. Mine didn't want me exercising the arm for the first two weeks. I would definitely get a plan with your doc for doing some sort of PT. Without PT I don't know how I would have made it through rads. I have no idea what type of accommodations the RO can make in your situation, but maybe there is something they can do on their end to work with you. Good luck!


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