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Starting Radiation January, 2022

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Anyone else starting radiation in January who would like to share experiences and provide support to one another? As I’ve been waiting to be cleared for rads, I have been following the experiences of those in the November and December radiation topic threads and have learned so much from the discussion there!

I had my UMX on October 21, but had a positive margin that had to be surgically dealt with, so my radiation plan was delayed a bit. Today, I finally got the all-clear from my plastic surgeon to go ahead with rads! I will be mapped on January 6 (they were able to schedule it on the same day as my oncology appointment, second Lupron shot, and first Zometa infusion, so it will be convenient, but definitely a full day)! I was told I will get started on the actual treatments about a week after mapping, so that should be the second week in January. I will have 25 sessions + 5 boosts (depending on how my skin holds up).

I’ll be getting rads with my TE in place, so if anyone has gone that route, I would love to hear how it went. I’m also interested in possibly using Mepitel, but I don’t yet know if my hospital recommends/allows it. Wishing everyone a happy last few days of the hear



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  • Mermaid75
    Mermaid75 Member Posts: 6
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    I'll be starting radiation in January! First meeting with the Rad Onc on Jan 7th, then it sounds like it'll all start quickly after that. Just joined and still figuring out my signature, but wanted to post to let you know there's another January out there

  • moderators
    moderators Posts: 8,081
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    Mermaid, welcome to Breastcancer.org! We're sorry you had to find this group, but we're glad you did, you're in good company here!

    Jen, excellent initiative, thank you for starting this thread!

    The Mods


  • mfk
    mfk Member Posts: 35
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    I'm also part of Team January. I had my planning session last week, and will have fifteen fractions of 3D CRT in January. My radiation oncologist is an evangelist for PBI in the right circumstances, referring to an age of treatment de-escalation in one of his papers. I've been fortunate in my diagnosis and surgery (margins were widely negative), so I fit the profile.

  • jen2957
    jen2957 Member Posts: 75
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    Mermaid and MFK-

    So glad you guys joined the crew- hopefully we will have some more come along soon. I know it’s not where any of us wanted to be, but I am so thankful we have this platform to help us support one another.

    MFK- how did the mapping go? It does sound like you have an excellent RO looking out for you.

    Mermaid- looks like you and I are going to be very close in our timelines. Do you know how many sessions you will be doing? On a non-rads note: you are absolutely in the right place with this community. There is so much info and so much support here; I think you will get acclimated quickly and find yourself with tons of supportive people who are willing to do whatever they can to help you through this process

  • mfk
    mfk Member Posts: 35
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    Jen - the mapping went well. The one notable aspect of my case is that the calcifications were close to the posterior margin at the pectoralis fascia. At the consult, the RO referred to that as "more challenging" but he was less concerned after reviewing the results of the scan and DIBH. They'll be using the TrueBeam treatment machine. For a few hours I wondered if I would be bothered by the tattoos, but I quickly put that behind me. They are very small specks. You won't find me at the gym or on a Peloton, but I routinely walk 3-5 miles at a moderately brisk pace, and the 30-second breath hold was pretty easy once you realize that you have to be intentional about it. I've started practicing at home with 45 seconds, which hopefully will make the actual DIBH seem easy. There's a picture of the scan in my medical record that looks like something you'd expect to see enlarged on the walls of a loft apartment - a Pepto-Bismol-colored view of my girls. They deserve some glory after putting up with the compressions and needles and such.

  • txlorelei
    txlorelei Member Posts: 68
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    I had my mapping on December 7, but due the holidays and traveling for my dad's memorial service I don't have my treatment dry run until January 3. I'll need 30 sessions so the last one should be Valentine's Day.

    Incidentally I just learned that my stepsister writes computer programs that control medical devices - including radiation machines. So I will have her to thank for getting zapped in the right places!

  • qkalake
    qkalake Member Posts: 10
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    Happy New Year to all...hoping we all get throught our Jan treatments.

    Still wondering if anyone on this forum has had a second lumpectomy and a second round of radiation on the same breast? That is what I am facing so would love to know if anyone is going through the same thing. I understand that it is not often offered as an option as many ROs are not familar with the target radiation, but my RO has been very successful. It prevented me from having a mastecomy.

  • mfk
    mfk Member Posts: 35
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    QKAlake - I just read your earlier post on the topic. It's not mentioned very often in the general literature. It would be interesting to know how often and at which cancer centers it's even given consideration as an option. I did note this paper when looking for research on the topic. It's certainly been under review for a long time. Good to hear that it's working well in your RO's practice.

    https://www.sciencedirect.com/science/article/pii/...


  • jen2957
    jen2957 Member Posts: 75
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    QKAlake- Interesting situation, and I hope someone comes along who can share some first-hand experience. I wonder if your RO would be willing to ask a patient he or she has already treated using this approach to reach out to you. Although privacy laws can be a bit tricky at times, I have offered to my PCP/GP (not sure where you are located) to share my contact info with any of her patients she thinks may need some support after a recent breast cancer diagnosis. Perhaps your RO has some patients who would be more than happy to reach out to you. I look forward to learning about your RO's plan and how it works for you.


  • dres123
    dres123 Member Posts: 45
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    My wife is starting radiation on Jan 12. 5 weeks, 25 sessions. I Will share our experiences and Wish everyone the best!

  • jen2957
    jen2957 Member Posts: 75
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    Dres123- Welcome to the January Crew! I love it when we have spouses join the community- it really is a disease that affects the whole family. I think your wife and I will be on a similar schedule time-wise; I’m hoping to get started by January 14, if possible, so I can finish in time to accompany my husband on a week-long business trip. I will get the 25, but will also get up to 5 boosts at the end.

    Do you mind sharing with this group a little about your wife’s diagnosis details? Did she have a lumpectomy? Mastectomy? Estrogen receptor positive, etc?

    Jen

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi all, Thanks for this thread. I just got my first radiation treatment today, the first of 15 and 1 boost. I'm in a prone position because my cancer was deep, close to my chest wall right above my heart, so this is the best position per the doc.

  • jen2957
    jen2957 Member Posts: 75
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    blue- Welcome- that’s fantastic- it is supposed to be a great way to effectively treat some patients while providing much more protection for the surrounding tissues and organs! Hopefully, you are finding it to be relatively comfortable. Keep us posted on how you are feeling as you progress!

    Jen

  • Mermaid75
    Mermaid75 Member Posts: 6
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    Hi all! It's a busy week - MRI yesterday, CT tomorrow, and then RO initial visit on Friday. Spending more time than I probably should trying to guess how many sessions I'll need. Not being able to set up my calendar for the next couple months is one of the hardest things for me to deal with. Any one else driven crazy by the scheduling uncertainties during this journey?

  • jen2957
    jen2957 Member Posts: 75
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    Mermaid- oh my gosh, YES! I feel your pain. I just found out last week that my RO’s orders are for 25 sessions, plus up to 5 boosts (TBD, depending on my skin).

    My husband’s organization’s biggest annual event (that has been cancelled due to Covid for the past two years)- hosted/coordinated primarily by him- is Feb 25-March 5. I get mapped for radiation Thursday, but they said it would take 7-10 days before I get started. I have a little “If I start on x day, then I finish on y day” list to determine if I get to go or not. I know that seems like such a minor issue in the grand scheme of things, but I just want some of my life back. It’s maddening!

    Also, I live in Ky and my dad lives in Colorado- he had a major emergency spinal surgery right as I began to get scheduled for my surgery, etc. I can’t get a handle on my treatment schedule enough to get out there to see him. Thank goodness for technology.

    I hope you get some finalized plans soon!

  • qkalake
    qkalake Member Posts: 10
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    mfk

    Thanks for sending the article. I am in Boston, so major medical centers, but even among the RO's at various hospitals, they treat a second lumpectomy and radiation differently. My RO has been doing it for over 10 years which is what gave me the confidence to proceed as opposed to automatically having a mastectomy.

  • Mermaid75
    Mermaid75 Member Posts: 6
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    Jen -- It's travel for me, too! I have a girls trip planned the first week of March and I just want to know if I can make it or not. Of course, easier for me because my trip is something that can be rescheduled, but I really don't want to! Fingers crossed the timing works well for your event!

  • dres123
    dres123 Member Posts: 45
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    Thanks for the warm welcome! I am a little hesitant because I know these boards are primarily for all of you strong women warriors, but I find myself here every day to get more information and resources.


    My wife’s case is a little unusual. She was diagnosed last year (Sept 2020)—IDC, 0.2cm, ER/PR+, Her2- her prior diagnosis did not indicate radiation. However in March 2021 she had a “recurrence”—much larger tumor. The doctors believe that it isn’t actually a recurrence but rather residual disease that was just missed (we had intervening IVF egg retrieval and that might have contributed to the tumor growth unfortunately).

    Now her recent tumor was 4.5cm, still hormone positive and Her2- Fortunately no nodes that we know of.

    She had surgery, then chemo, and now radiation + hormone therapy.

    Best wishes to all of you as you get started!

  • dres123
    dres123 Member Posts: 45
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    Jen—best wishes for your dad too

  • Dicon
    Dicon Member Posts: 32
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    hello all. Finished mastectomy then chemo ending Nov 30 and now on my second radiation treatment. Only takes about 10 min on the table with device rotating three times. Scheduled for 33 treatments. Tomorrow is port removal so no radiation and restarting Monday for treatment 3.

    No side effects as yet. Have had experience with this 10 years ago after a lumpectomy in the other breast and the fatigue and redness didn’t come until maybe the last 3 weeks. This time it’s a much wider area so I don’t know what to expect. I did already start with aloe and have coconut oil as well. OR said to expect some blistering towards the end but has medication for that and healing is very quick. We shall see.

  • jen2957
    jen2957 Member Posts: 75
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    I had “all the things" done today: rads mapping, onco appointment, Lupron injection, Zometa infusion, and lymphedema therapist evaluation (no lymphedema, but had cording that has been resolving; I decided to keep the appointment in order to be proactive as I begin rads). So far, all has gone smoothly- I know there is a possibility of side effects from the Zometa for the next few days, but shouldn't be any worse than maybe vaccine-related reaction if I get them.

    The only somewhat bad news I got today was that my radiation treatment doesn't start until January 18. I needed to start rads by January 14 to get the 25 sessions plus 5 boosts in, but I can't start until January 18 bc my RO is on vacation next week and the 17th is a holiday. My last day of rads is scheduled to be March 1. I was scheduled to leave with my husband on February 25 for his organization's annual convention that he hosts on Feb 25. Hoping I either don't end up needing to do all the boosts at the end so I can leave when my husband does OR I will at least be able to join him for part of the time. Ughh. Cancer- the gift that keeps on giving.

    Dres- Gosh- Y'all have been through the ringer- I am so sorry that you are having to go through this a second time. As you can see from my stats, I had a large tumor as well…they initially thought it was less than a centimeter, but it ended up being 5.5 cm of equal mix of DCIS and IDC. I went from Clinical Stage 1a with no node involvement on any scans to Anatomical Stage 3a after surgery to Pathological/Prognostic Stage 1b after pathology (very lucky to have had the markers I have, considering the size and Lymphovascular invasion). Thankfully, my MammaPrint came back as Low Risk as well and also indicated that chemo would not be beneficial for my current tumor. No guarantees, of course, but not as bad as it could have been. Did your wife get OncoType done on her tumor?
    Also, you are 100% welcome here- don't be hesitant at all. I personally love having a spouse's perspective so I can better understand the impact this whole…hmmm… situation? Nightmare? Journey? Detour through South Hell? I never know what to refer to it as. 😂 Often, our spouses want to be strong for us and don't want to upset us with their own fears and feelings-it is helpful not only for us, but hopefully we can provide you with much deserved support as well!

    Mermaid- Two words: Over It!!!! Your trip is roughly the same time as mine! I hope yours works out so you don't have to reschedule- it's hard enough to get everyone's availability lined up as it is. Fingers crossed you won't have to postpone or change plans.

    Dicon- Huge congrats on getting your port removed! What a relief that will be, I'm sure! Enjoy the weekend away from all things cancer if you can!





  • mfk
    mfk Member Posts: 35
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    Just read through the treatment planning document that was posted to my medical records. Obviously I don't follow all of the details, but it's comforting to see the care that goes into figuring out how to ensure that the radiation lands where it should and doesn't land where it shouldn't. Region of interest, target volumes, lots of math. Learning some basic things about anatomy that never came up in business school.

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi all, I am doing fine with my 4 treatments so far, prone position working out OK. I really like the VA, they've been great with all of my treatments so far.

    Jen - Sorry to hear that your dad had major surgery and you can't get out to see him. I hope he heals well. Also sorry that your treatment schedule isn't matching up with your husband's conference trip. I do hope you can make it for at least part. I feel for you trying to go and having scheduling mess it up. So close to being the right timing. I heard of one woman getting two treatments in one day a few times to help end radiation on a certain day for her, I have no idea how that worked out, or if your doctor could do it for you. For me, my sister bought us a cruise for a Christmas present and a celebration of me completing treatment, it was to leave in March 2022. Now cancelled due to covid scares on cruiseliners. I cried when it was cancelled I was so looking forward to it.

    mfk - Brave of you to try and read your records. I think I would drown in all of the medical terms.

    dicon - Wish I could get my port out, I haven't been told anything other than "we leave it in for awhile" about when mine might come out.

  • txlorelei
    txlorelei Member Posts: 68
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    4 sessions down, 26 to go.

    They have me positioned with my right arm raised to shoulder height. During the mapping and the first treatment, my arm fell asleep. It hasn’t been as bad during the following shorter sessions. However, I woke up this morning around 3:30 am with shooting pains in that shoulder and upper arm. I had to take both Tylenol and advil to even make a dent in it. When I asked the tech about it this afternoon, she didn’t have any advice.

    So far no skin issues; I’m using both Miaderm and Aquaphor as a precaution.

    Good luck to everyone

  • oldladyblue
    oldladyblue Member Posts: 302
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    Gosh TXLorelei , sigh, I am sorry for your arm/shoulder pain. I hope they can figure out how to relieve it for you.

  • jen2957
    jen2957 Member Posts: 75
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    TXLorelei- Ughh! I have only done mapping so far, but my right arm was over my head - kind of in a 5th position ballerina pose- when they finished, I had to use my left hand to help lift my right arm off the table. I have had some shoulder pain in that side before, so this just exacerbated it. Have you heard of or used Voltaren (diclofenac) cream? It is an anti-inflammatory cream. It used to be prescription only here in the US- my husband had a back issue when we were out of the country and that’s when we discovered it bc was OTC there. It worked wonders for him and has since become OTC here…it works like a charm on my shoulder pain and my thumb joint arthritis. You may ask your radiology team about applying it to your shoulder after each session- it’s inexpensive and may be worth a shot.

    MFK- For me, I think reading the plan of treatment and researching everything is my way to try to find a bit of control in all of this chaos. I feel like I need to know what is happening and why at all times.

    Oldladyblue- I have not had a port (no chemo, but due to my history of stroke, they would have not been keen on doing one anyway), but all my friends who have had one say it was one of the things they hated the most- even if it didn’t cause pain, it was just always there and always annoying. I hope you get yours out soon!
    I’m so happy to hear that you like your team! It is so important to feel comfortable with the people you are going to be dealing with for such a long time, but even more so when you have to trust them to manage your health care! I can’t believe you are already 4 sessions in- it seems like it quickly! I hope all of us will feel that way at the other end of this



  • txlorelei
    txlorelei Member Posts: 68
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    I had the shoulder pain again early Saturday morning, but I noticed that it went away when I was sitting up. So last night I tried sleeping on my wedge pillow (that I had bought for surgery recovery) and that seemed to work. I think I’ll use it again tonight even though I prefer to sleep on my side rather than my back.


    Jen and Mfk: did your treatment plan show exactly where you’ll be zapped? My RO’s discussion points have been very general. I think I’ll ask for more details when I see her again. The radiation office doesn’t participate in MyChart

    Old lady blue: I was very glad my MO gave permission for my port to be removed during my November surgery. Hope you can get it out soon.

  • Mermaid75
    Mermaid75 Member Posts: 6
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    First visit with the RO was on Friday, mapping on Tuesday and then I get started with my 20 sessions either next Monday or the Monday after that. Feeling thankful for what sounds like a relatively short course!

    Jen - When I asked about travel, my center said they can often move a Friday treatment to the early morning and a Monday treatment to the late afternoon to try to accommodate weekend travel. I don't know that that would give you enough time to get to the event with your husband, but maybe worth asking about?

    TXLorelei - Sorry about the arm pain! Hope you can find some relief!

    mfk - Looking at the treatment document sounds fascinating! My husband is a physics teacher and has helped me understand (at a very simplified level!) how the radiation machines work and it is just amazing. I feel so thankful for all the scientists who were able to figure these things out!

  • Dicon
    Dicon Member Posts: 32
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    Update. Well, port removal postponed. Woke up in the middle of the night wide awful pain in my side and lower back. came two days after radiation. Radiologist does not think radiation caused it since radiation is in upper body.

    Could be from pinched nerve in my spine which was exacerbated by taxol and the whole neuropathy thing. Anyway, going to pain doc Thursday who will send me for an mri. Does seem an odd coincidence the pain came with radiation. Going for fourth session this morning so will see if it gets worse.


  • Mermaid75
    Mermaid75 Member Posts: 6
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    Mapping session today and got my tattoos. Ouch! Before I got them, I had a thought of someday getting the dots tattooed into little cute flowers or something, but if just a dot feels like that, I’ll never last for an entire design!