starting rads feb 2017

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I know many of my January surgery sisters are joining me, but I thought id start a new thread for all the february rads sisters.

im 'just' doing external apbi, but im a little freaked out, especially about skin burns bc I have such sensitive skin.

if you have already done rads, what are your top tips? has anyone done external abpi?

xx

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Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Bumping this for ladies who are starting rads in February

  • Fightingirl
    Fightingirl Member Posts: 409
    edited January 2017

    I will start brachytherapy with catheter placement on Feb7th. Treatment will start twice daily for 5 days ending on the 15th (due to the weekend) they will remove the catheter after my last treatment on the 15th and I'm told I get a special bra to wear for the duration. I'm scared of the whole bit. Apparently getting the catheter is no picnic but I've been given Valium and a cream to apply to the breast to help with numbing and hour prior.

    Annoyingboob, I was just looking to create this forum when I found yours because yes, our Jan sisters are starting to move on to the next step.

  • BeachBabyK
    BeachBabyK Member Posts: 156
    edited January 2017

    I'm here, either way!! Still hoping for brachytherapy, but will be starting in Feb. either way!

    Image result for breast cancer radiation meem

  • Fightingirl
    Fightingirl Member Posts: 409
    edited January 2017

    BeachBabyK, your radiance shines through the World Wide Web! Let's get radioactive in February together ladies!

  • pepper43
    pepper43 Member Posts: 103
    edited February 2017

    Hello ladies! I will be starting radiation- 25 external beam radiation sessions on my right chest wall and nodes to be exact - next Tuesday. I had my right expander fully expanded yesterday (ouch!) and had my CT Sim done. Gotta confess I was struggling with decision to go forward with rads as I've also been battling kidney cancer at same time (they found mass in a full body PET scan after BC diagnosis). I had my right kidney removed on 1/11 so we're going warp speed here (mastectomy was on 12/09). I had 20 weeks of chemo first, mastectomy then, then kidney removal. My MO thinks it will decrease my risk of recurrence than standard since most studies on radiation efficacy were performed on women who had surgery first, chemo second. I had positive lymph node before chemo and one after. Crossing fingers she is right.

    It's nice to meet a group of women who will be undergoing rads same time as I! I've got my cream ready to go (Wellskin GlaxalllBase- approved by RO nurse) and am working on positive attitude (i.e. keeping focus off of potential side effects and on chances are it'll be lasering the shit out of any micromets I've got in there that could make trouble later.

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    hi pepper43, thanks for joining us! I just had my simulation today, so I won't start until the end of the month.

    I'm sorry to hear about all that you have been through - what a whirlwind few months of taking organs out! I'm hope you are recovering ok and mentally preparing for part 2. I find that the mental game is harder than the physical one, but I bet losing a kidney is painful!!

    We are here for you. Xx

  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    HI annoyingboo

    I have simulation tomorrow. We are following the same path except mine was idc. What kind of radiation are you doing. I was offered the shorter 4 week higher dose. Not sure which way to proceed yet.

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    hi mamasha!

    I'm lucky and they are going to partial breast and said I can do 5 sessions, every other day, to begin feb 22. I had my simulation today. My dcis was deep, just above my pec muscle, so we shall see how much lung gets zapped. It's right side, so I don't need to worry about cardiac involvement.

    I'm more stressed about the tamoxifen, to be honest. Are you planning that too or have you started already

  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    I haven't started tamoxifen yet....and dreading it. My MO said I could start after rads so we could see true side effects.

    Wishing you the best

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    yep. Same for me. I got the prescription and was told I could take it day 1 after rads. Blech. I think I'll take a few days of pampering before I dive in. I know there are women who do really well on it, so I need to get in a more positive mindset. I feel like I've been fighting my treatment all the way bc I feel healthy and am in denial. I need to trust that these treatments are all trying to help me and not kill me! Good luck to us all!

  • Fightingirl
    Fightingirl Member Posts: 409
    edited February 2017

    I will see my MO on Feb 9th, if mammaprint t is low risk then no chemo after radiation which means he will probably give me a prescription for tomoxifen on the 9th to start taking when radiation concludes on the 15th. I'm not crazy about 5-10 years on pills. A, I know it's very hard to trust they are more helpful than harmful. I guess we need to look at all the brave warriors on this site who've gone before us and are doing well for inspiration. I do love the I idea of a few days break and I will probably copy you on that that! All the best ladies

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    fightingirl, im SO jealous - you will be done with rads before i even start!! my next visit isn't until feb 17, and thats just another practice run. the real thing doesn't start until feb 22 bc of stupid monday feb holidays!!!! you will prolly be on your cruise by then, lol. no chemo. no ma'am. you have a vacation to take!! ill be thinking of you and stomach in knots all day feb 9. that is soon, and then you will be done with the waiting game. you can do it - 8 more days!!!!

  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    Hello fellow February girls!

    Told today that i will start February 8th. Hopefully done March first if no snow days:)

  • ShannaM
    ShannaM Member Posts: 22
    edited February 2017

    Glad that I found this forum. I had my first radiation today. I'm hoping it'll go by fast with minimal burning. I will have 33 treatments in total. I had chemotherapy, surgery, and now rads. I'm on tamoxifen, and it's not bad at all. Although the chemotherapy already put me into menopause. My next big decision is to remove my ovaries or do a full hysterectomy to keep my body from producing estrogen. Idk what to choose.

  • ShannaM
    ShannaM Member Posts: 22
    edited February 2017

    Glad that I found this forum. I had my first radiation today. I'm hoping it'll go by fast with minimal burning. I will have 33 treatments in total. I had chemotherapy, surgery, and now rads. I'm on tamoxifen, and it's not bad at all. Although the chemotherapy already put me into menopause. My next big decision is to remove my ovaries or do a full hysterectomy to keep my body from producing estrogen. Idk what to choose.

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    hi ShannaM! Boy you have been through a lot! Thanks for joining us on this journey! I'm glad to hear you are tolerating tamoxifen! Definitely skittish about that! Not sure about your uterus and ovaries - what are you leaning towards? Do you mind if I ask your age? From your picture, it looks like you already have a little cutiepie at home, so that's good! Keep us posted!xx

  • Fightingirl
    Fightingirl Member Posts: 409
    edited February 2017

    I was reading your post shanna and it hit just how many variables there are in this journey. Just getting cancer out of our bodies leads to so many decisions and treatments and possibly other surgeries! You have been through a lot and I'm glad to hear you are tolerating the tomoxifen well. Like annoyingboob, I'm skeptical of taking a pill for the next 5-10 years . I'm coming up on that part though so maybe I just need to get my head wrapped around that next. I've just beem focused on the next step of radiation but hopefully after that I can learn to accept the next steps.

    So looks like a couple of us start radiation next week!

  • SusanaQ
    SusanaQ Member Posts: 23
    edited February 2017

    hi shanna, I'm in the same boat regarding not sure whether to have just an oophrectomy or hysterectomy also. Consulting with surgeon next week.

  • BeachBabyK
    BeachBabyK Member Posts: 156
    edited February 2017

    I was also told 5-10 years of tamoxifen. Expecting to get the Rx when I see the MO on Monday, He said I would start during radiation but didn't give me an actual date.

    I also considered oopherectomy, but I was told that does not necessarily mean that they will take you off of the meds as other organs and your fat cells still have estrogen. I figured that's actually a decision that can wait a while until after I see has I handle the drug. I have stayed away from all of the literature on tamoxifen as I am concerned that I will be looking for side effects to happen - mind over matter, right?

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    bbk, my ro and mo prefer I start tamoxifen after rads so if there are side effects they can differentiate if they are from rads or meds. Might be something for you to discuss at your appt mon

  • BeachBabyK
    BeachBabyK Member Posts: 156
    edited February 2017

    A-boob I prefer that too!! I'll bring it up on Monday :-)

  • ShannaM
    ShannaM Member Posts: 22
    edited February 2017

    hi annoyingboob, I am 33, was 32 at dx. I actually have three children. A 8,5, and 2 year old. They've been troopers through it all. Every doctor I've talked to recommends something different. I'm not opposed to the hysterectomy for a peace of mind knowing I cannot get cervical cancer. Idk, I just take it one day at a time. My oncologist told me that I will stop taking tamoxifen after I have my ovaries removed and start some new 10 year drug that gives better results for pre menopausal women. I cannot remember the name of it though.... I will ask next time I see him. I am a little concerned that my oncologist doesn't recommend any scans or blood work ever. I like the idea of a routine check where you can have a visual.

  • Elem
    Elem Member Posts: 327
    edited February 2017

    Hi ,

    Havent committed to date for rads yet and have an appt on the 8th with MO . I will see what the recommendation will be at that time as far as additional tx. Ie: hormonal will be . Right now, I have to wrap my head around radiation. 4 week every day except weekends . Thus 5 days a week. Sounds doable , but it is on my left side and I have a stent in my LAD artery. I hope cardiac issue poses no problem for the heart or my well being there. I used to smoke so also hoping lungs will not be damaged . I have not smoked for 5 yrs but I think my lungs are still vulnerable due to past hx of smoking!

    Anyway, hope to share my experience with yours and gain friendship, support and insight on this new phase of BC .


  • ShannaM
    ShannaM Member Posts: 22
    edited February 2017

    hi elem, I am having radiation on my left side as well. You should look into breath hold radiation, it minimizes radiation to your heart. That's what I'm doing since my cancer was on my left as well. The treatment seems long, mine is six weeks. Just take it one week at a time.

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    shannaM, totally frustrating to not get consensus among the experts!! i have no insight, although id rather have as few surgeries as possible, so i guess would want them to take everything out if i didn't need it. but i don't know the whole picture and ramifications, so id look to others who have made similar decisions to help you in yours. good luck!!!!

    xx

  • jandjmom
    jandjmom Member Posts: 48
    edited February 2017

    I am starting radiation on Valentine's Day with my sim. I have been accepted and randomly placed in the experimental arm of a radiation clinical trial. To participate, I had to have a positive lymph node(s) that was cleared with chemo before surgery. Chemo didn't wipe out 4.6cm mass completely as it left 2-2mm dots that were removed by lumpectomy, but the chemo did clear my one positive lymph node. My radiation treatment protocol is now toreceive no radiation to any of my lymph nodes- only the breast alone. I will be followed for 10 years. I am very relieved as I believe breast cancer is over treated and hope this study will benefit me as well as women in the decades to come. Still not looking forward to treatment side effects, but not much I can do about that.

  • Elem
    Elem Member Posts: 327
    edited February 2017

    Thank you Shanna , I will ask about it for sure. With every phase , there is so much to learn . I am hoping the 4 weeks goes by quickly and with minimal sides.


  • Fightingirl
    Fightingirl Member Posts: 409
    edited February 2017

    elem, ate you a candidate for brachytherapy?

  • Elem
    Elem Member Posts: 327
    edited February 2017

    I am not sure fightingirl. It sounds interesting less likely to damage my heart. But I believe my initial DCIS covered a largecarea and was deep so not sure . I will ask about it when I see them on Wed again. Its funny , I still had anesthesia brain last week so my husband actually had to go over a few of the RO details with me again. He did say we talked about the breathe therapy during Rads. I was trying to break from BC for a few days , but now I am thinking I have face this soon so let me see ! But then I start stressing ! BC has down a number on us! Lol .. I sure couldn't imaginecriding this train without you ladies. Enjoy the evening

  • Fightingirl
    Fightingirl Member Posts: 409
    edited February 2017

    it might be worth checking out...just so you have all your options and can decide what is best for you. I am doing it because I have breast implants and it's the best way to not cause my left boob to harden and shrink! I worried for awhile if I made the right decision but I've finally settled on it being best for me. Best of luck and keep me posted. If you do decide on brachytherapy, there's is another thread where our January girl pyrrh documented her experience each day of radiation and I'm going to do the same just because it's not as popular of a method even 20 years since they've been doing it! This way people can have some real life stories to read ...keeping in in detail all experiences will be somewhat different. Enjoy your evening as well!


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