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Starting radiation February 2022

kotchaj
kotchaj Member Posts: 216

Hi there,

Is there anyone else that might be starting radiation in February? I had my initial consult yesterday and go back tomorrow for my simulation and tattoos. I had hoped to start in January, but my RO is going to take a vacation, so it looks to be I won't start until the first week of February:-( Boo. I will be getting 16 treatments and 4 boosts at the end.

Comments

  • loverofjesus
    loverofjesus Member Posts: 174

    Hello! I will be starting in February. Probably late fe

  • kotchaj
    kotchaj Member Posts: 216

    Hi LoverofJesus!

    Glad we can continue this part of our journey together, too! I've finished my simulation, and now have a two week waiting period before I begin. I don't think we will be too far off of each other.

  • Rocky41102
    Rocky41102 Member Posts: 5

    I had my simulation today and will start radiation Feb. 3rd. 25 treatments. I didn't get tattoos but sharpie marks covered with tegaderm! It's a little strange but I'm glad it's not permanent.

  • kotchaj
    kotchaj Member Posts: 216

    Hi Rocky41102!

    Welcome to the thread! I ended up with tattoos, would have preferred to have sharpie marks, but I have to wait two weeks before I can start so they tattoed me. My surgeon's office said that they will take off the tattoos afterwards, no charge, if I want them removed. Not sure yet on that one.

  • kotchaj
    kotchaj Member Posts: 216

    Well, my start date is February 9th. Glad I have one and with the weather currently, glad it wasn't this week to start!

  • gamzu710
    gamzu710 Member Posts: 203

    Good luck with your first radiation treatment tomorrow, KotchAJ!

  • kotchaj
    kotchaj Member Posts: 216

    Thanks gamzu710! I'm so ready to get this party started, lol. And over with!

    Rocky41102, how are your treatments going? Hope you're feeling good with them so far.

  • deborra67
    deborra67 Member Posts: 13

    Hello February RT folks... I had my simulation today, & have 3 new tattoos. Everything went pretty smooth - and tomorrow I have a mammogram, is that something you all did prior to starting radiation?

    My first treatment is Tuesday 2/22, and I will also be on the 16 session regimen. From what I understand, the sessions have a higher dose of radiation and it comes out about the same in the end compared to the longer treatment plans. Works for me.

    I've had a longer wait to get radiation started, so I'm also anxious to get going & get this part done. Hope you all are doing well with your radiation as well.

  • kotchaj
    kotchaj Member Posts: 216

    Welcome Deborra67!

    I had to have a mammogram prior to my start of treatment. Not sure what others have had to do. Mine is also the shorter version. 16 doses then 4 boosts at the end. I completed #6 yesterday and so far, so good with all of them.

  • deborra67
    deborra67 Member Posts: 13

    Hi KotchAJ,

    Thanks for letting me know what your experience was. Hope it keeps going well for you, all the way to boost #4.

    Have a great weekend!

  • loverofjesus
    loverofjesus Member Posts: 174

    Hi ladies. I will be starting radiation next week. Well sort of, I get my mapping Monday. The actual start might be the next week. I’m not sure how that works.

    A little back story. I have been through 13 rounds of chemo, and a DMX with expanders. Had some necrosis after surgery so that delayed things a bit. And so I’m now 12 weeks past my last surgery. I have been scared that is so long to wait to start radiation. But they did get clean margins on the DMX and my lymph nodes were negative. My radiation oncologist hasn’t said anything about the time frame.

    I have having a bit of anxiety today. I’m looking for reassurance from you guys that have already began radiation this month. I am not really scared of radiation I think I’m just tired of having to go through all of this. I’m so ready for it to be over. And although it will not be completely over after radiation it will seem like such an accomplishment to be done. I will be driving 45 minutes or more one way to treatment and I have to have 28. Which I guess is protocol pretty much for people with mastectomies.

    I know I’m rambling I’m sorry. I just am struggling mentally today. And here is where I thought to turn. I’m so thankful for this community. You all have helped me so much!!

    Hugs to you all!

    And whatever you want to share about radiation with me or just the mental aspect of it. Either way I would love to hear.


  • Jamoon
    Jamoon Member Posts: 6

    Hi everyone . I will be starting Radiation in a couple weeks I had my mapping done a few days ago . I will be having 15 treatments to the entire breast and 5 treatments to my surgery area. I would appreciate any advice I can have . Was told my my RO to get a cream called Galxal which should be apply to the area 3 or more times each day . Was also asked to have a Saline solution to used during my radiation treatment.


    Good luck to everyone who is going through thi

  • loverofjesus
    loverofjesus Member Posts: 174

    Hi Jamoon! Welcome to the group! I will be praying you do well for your radiation.

    If you don’t mind me asking what exactly is the saline for? I was told about moisturizers etc. but I don’t think I have heard of saline. What do you do with it??


  • Jamoon
    Jamoon Member Posts: 6

    Thank you @LoverofJesu… I hope your treatment also goes well with no side effects.


    Was told by my RO nurse that the saline solution it to soothe the skin in case it burns. I was told to soak a wash cloth with the solution and just gently put over the area no rubbing.


  • loverofjesus
    loverofjesus Member Posts: 174

    Ok you guys have a question for those of you already doing rads or have already finished.

    Who all had radiation to your clavicle lymph nodes even though you nodes were negative at pathology and you had a mastectomy?

    My radiation oncologists said i need radiation because after chemo I still had tumor left at time of surgery. At surgery they got clean margins and no nodes involved. I am basically doing radiation to insure there were no strays left behind that you can’t see. But what I don’t understand is the whole clavicle lymph nodes? I get underarm nodes that is pretty much standard. Bir does anyone know why clavicle? I will be asking my radiation oncologist but right now she is out of

    Town for a week.

  • dancemom
    dancemom Member Posts: 407

    loverofjesus, I am a March patient, but looking at these earlier threads for info, and saw your question. My cancer is in the inner quadrant so some of the treatment area is different, but RO said she just isn't comfortable NOT doing the full standard. My MO had hoped RO wouldn't feel the need to do all the clavicle area, or even the underarm area as I had no involvement anywhere on the outer lymph nodes, but "i am not a radiologist". So, the plan now is I get the 28 post mastectomy standard plus another 8 to my sternum and intermammarary nodes. Planning scans are March 1. Covid screening this week.

    Good luck and I hope things go smoothly for all you Feb people. I'll go to a March thread soon.



  • kotchaj
    kotchaj Member Posts: 216

    Hey LoverofJesus and all,

    I am getting radiated under my arm and up to my sub clavicle, but I did have 21 nodes removed with 20 of them being cancerous. I also had clean margins to my tumor which was located at about 3 o'clock on my left breast. We are doing radiation to hopefully zap any loose cancer cells that may be hanging out somewhere in my breast area. If you look at my timeframe, I didn't start radiation until quite a bit after my surgery and was freaking out about it, but it's for clean up. And once I got my mind wrapped around that, it was better. Not perfect, but better. Anything we can do to get this dang stuff out of our bodies, I'm getting on that bus. But then, I picked up the saying from another person on the January thread of the human BBQ. So that's where I go for treatment:-)

    I have an hour and 15 minute drive to radiation. I'm so ready to be done, too. We had a winter storm here last Thursday and have another one coming this Thursday which will probably delay my treatment by two days, NOT one. UGH.

    Dancemom-stay here with us and then start a March thread. I'm also in the January one even though I didn't start til February. There's just so much great information out there for us all to read about other's experiences.

  • sondraf
    sondraf Member Posts: 1,678

    Guess I better pop in here - Ive done 2 of 5 treatments for L3/L4 and Im already bored of the 45 minute- 1 hour schlepp to the hospital each way on public transport. Its also Half Term school holidays here and my H is very near what is the popular kids museum attraction so the tube stop is CARNAGE by late morning when I pass through. Crying children, stressed parents lugging baby buggies up the steps, confused grandparents, total mayhem.

    I commented to the radiologists today that from the treatment bed it sounds like they are scurrying out of the room and away from the radiation blast as fast as possible.

    Ill be back for breast rads on 1 March (oh god, I thought I had all of next week off! uggghhh) but only five sessions in line with updated UK guidance from a trial showing same benefit for an accelerated five sessions over 15. LoverofJesus - I will be having clavicle area done as while I had cancerous nodes in Levels I and II, they did not find any in III and IV (which they expected apparently), so that area will get some bbq luv because that was the next logical place for the cancer to go. Its more to mop up potentially mutated cells from my primary so those dont park somewhere and make new mets different from the current mets.

  • deborra67
    deborra67 Member Posts: 13

    Hi to the Feb folks, and those March-ers too. I am through 2 treatments - not many, but at least I can say so far so good. The first treatment was quite a bit longer, as there was more imaging to do and setting up the machines for the first time. Today it was super fast, and then I had a doctor's appointment which will be a weekly thing while I'm in radiation.

    It was scary yesterday, just all the waiting and anticipation. There were folks busy in the room, in & out - getting all of the equipment working correctly, and then suddenly it was done - so.. I guess no worries so far & I'll take it.

    I agree, all the driving - UGH. But it's one more thing to get the cancer gone & keep it gone, so I'm all in. LoverOfJesus, I don't believe my radiation is to the clavicle area.

  • barbojoy
    barbojoy Member Posts: 47

    Hello all,

    I hope you are doing well. My 1st rads treatment was 02/16. The machines were down 02/17 and the clinic was closed 02/21, so I've had 4 treatments- going for #5 today. I'm scheduled to have 19 total. My BC was on the left and I had DMX 07/28, then 6 rounds of TCHP chemo (ending 01/13/2022).

    I hate the radiation. The machine scares me, the poison scares me. I have trouble holding my breath and I'm doing DIBH. I have read and they are reassured me that if I exhale or breath during the zapping that the machine will stop. I just wonder how quickly it stops (even though they say immediately and that I can't goof it up). It still seems like a tiny amount would end up in the wrong place. I have to go through I think 4 different zaps holding my breath and 2 are 25-30 seconds or so. I would love to learn from anyone who has completed DIBH rads & didn't effectively hold their breath. Curious about side effects/outcomes. Even if I was perfect at it, based on the location of my cancer and the wide-spread approach they are taking- there's risk for heart/lung damage.

    They are radiating my clavicle, chest wall, skin and armpit. I had (have?) Paget's disease and invasive ductal carcinoma. They removed 1 lymph node (SLN) during the mastectomy and it was positive for IDC. They are using a Bolus which is meant to spread the radiation more effectively across my skin to make sure there are no little buggers hiding out in the DMX scars or skin. I have a flat closure w/ no expanders or implants.

    I had a pretty bad pinching and sore pain last night just before bed in the corner of my upper left chest - it has faded this AM. I also have increasing bad heartburn. I wonder if the mometasone (elocon) steroid cream could be the culprit- I use it across the area and my clavicle. I can't imagine the radiation is already causing heartburn, but maybe? I meet with my RO today, so I'll ask her. I'll also ask about xrays- I see that some people are getting those weekly and my doc hasn't mentioned need for an xray at all. I am really worried about my heart and lungs.

    When I searched this site, I didn't see many posts about DIBH or bolus. Curious if anyone else is using bolus and their experience w/ burns or long term effects.

    I was glad to read in the January and February radiation threads that most people are doing well. I also appreciate reading relatable fears/anxieties and tips.

    Hope everyone's treatements go well this week!

    Barb


  • kotchaj
    kotchaj Member Posts: 216

    Hi Barbojoy,

    I've had bolus every other day, so 5 of them of my treatment so far. I've not had any skin reactions until this last treatment and it was to my left arm, not the area being treated. I'm going to ask them about it today as yesterday I had to cancel because of an ice storm here.

  • barbojoy
    barbojoy Member Posts: 47

    @KotchAJ

    Thanks for sharing that. I spoke with my RO 6/24 and she said bolus was only for the first 5 treatments. They did not use it on #6, 02/25. I have a little bit of pink on my chest and soreness in my armpit, but no blisters or anything yet. Please keep us updated on your side-effects and progress. I'll do the same. Sorry you had to miss one for the ice storm. I am glad that I get the weekends off, but also eager to get through it all. Best of luck!


    @Deborra67 I hear you about being scared. I have tried to explain it to others, but for me the fear is visceral. I know that it is painless and there's tons of science behind the preciseness of the treatment, but I have been through 6 and I am anxious and nervous still each time. You are right though, it is super quick. Maybe it gets easier... we can hope. Good luck!

  • Rocky41102
    Rocky41102 Member Posts: 5

    I've completed 15 treatments so far and I have 10 left! I'm so excited! I'm getting radiation on the chest wall, armpit, and I think clavicle area. So far, I'm just now getting a tad pink in a few spots and the skin in my armpit is slightly darker than the other side. I do have one spot along my incision that had a blister but I'm 99% positive that was from wearing a bra and going bowling one day and not from radiation. I like my radiation team and the hospital is not far from my house which is so nice! My surgeons and oncologist are both over an hour away so it's so nice just driving 25 minutes.