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Radiation May 2022

nns121317
nns121317 Member Posts: 106

I had my consult and mapping yesterday, and I start six weeks of rads on May 9th. I'd love to share stories with others on the same timeline!

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Comments

  • quietgirl
    quietgirl Member Posts: 165

    I just wanted to send you some positive vibes as you wait to start I’m sure that there will be others who join you as we get closer to May

  • Tsohl
    Tsohl Member Posts: 24

    Greetings. I will be starting 7 weeks of radiation therapy Thursday, April 28th. I had the mapping session two weeks ago and am eager to get started. My tumor was between my breasts and never showed up on a mammogram. It looked like a little dimple on the side of right breast in décolleté area, but nestled down against the pectoralis muscle…thus the need for radiation.

  • hippmark
    hippmark Member Posts: 92

    Hi. I'm already in rad treatment. Just started April 20, but will be going until May 31 (6 weeks). So we can share our stories together. I am right breast, chest wall and lymph nodes up to clavicle. 25 plus 5 boosts to surgical area. No side effects yet as it has only been 4 treatments. Finished chemo 2 1/2 weeks ago.

    I am using Rejuvaskin and layer Aquaphor on top of that. Already trying to hold my right arm away from the side as to try to lessen friction.

  • Tsohl
    Tsohl Member Posts: 24

    Greetings. I will be starting 7 weeks of radiation therapy Thursday, April 28th. I had the mapping session two weeks ago and am eager to get started. My tumor was between my breasts and never showed up on a mammogram. It looked like a little dimple on the side of right breast in décolleté area, but nestled down against the pectoralis muscle…thus the need for radiation.

  • pokemom1959
    pokemom1959 Member Posts: 67

    Hello! I had my simulation today (no tattoos) and am waiting to hear how many treatments I will need. Originally my radiation oncologist said 6.5 to 8 weeks, but since then I've had a reduction (2.5 pounds of breast tissue removed on each side) and chemo (which was not originally planned), so when I talked to her before the mapping, she said 4 to 6.5 weeks depending on what the mapping/simulation showed. I'm praying for the 4 weeks, but won't know for another week or so.

    I'm doing left side and finished chemo 4 weeks ago. Apparently when they are doing the radiation, I have to take in a big breath and hold it in order to lift my breast up and away from my heart. If my chest drops too much, the machine knows to stop shooting the radiation. Seems like the procedure itself should be fairly easy ... the side effects are the issue.

    Not looking forward to this, but glad to have the end of this treatment (other than the oral medication) in sight. Now if my damn hair, eyebrows and eyelashes would just hurry up and grow back! :)

  • nns121317
    nns121317 Member Posts: 106

    Pokemom, I hear you on the hair regrowth! The hair on my head is slowly coming back, but my eyelashes and eyebrows are MIA, and I think I miss them the most!

    I did get the tattoos. I have lots of freckles, so it wasn't a big deal to add a couple spots. I'll be having surgery to remove my remaining ovary during rads, but the RO said I could just take the surgery day off and make it up at the end. Far easier than rescheduling surgery.

  • 1982m
    1982m Member Posts: 224

    Hello! There isn't a April group so I've been reading the March one and thought I'd pop in on May as well.
    I started 15 whole breast hypofractionated radiation on April 8th and will finish May 2nd. I believe for a total of 50Gray. I was suppose to have a week where they did a boost to my tumour bed (dx @ 39 but I had a re-excision and oncoplastic reduction and the rad onc desired to forgo the boost. I'm happy with the choice. There also a published paper that said the outcomes for Her2+ patients didn't have better outcomes with radiation boost vs no boost so I feel ok with it all.

    Here's the article if anyone's curious:

    https://pubmed.ncbi.nlm.nih.gov/32861819/

    pokemom-I'm also doing the deep inspiration breath hold. It hasn't been hard at all! The hardest was when they forgot to tell me to breath after holding. I didn't want to breath out without their ok….but couldn't hold it forever. Haha. It only happened once (today).

    The appointments have consistently been very quick. I don't get a say on time other then am/pm. They can accommodate some things though- I had a work meeting and they booked me after which was nice.

    I didn't have any real fatigue for the first half, but very suddenly it's caught up to me. My breast is red a bit but not to bad (I'm very white). I'm a bit itchy and a bit sore- I'm sore though above the radiation spot… overall though not to bad.

    I hope radiation goes well for you all!

  • Tsohl
    Tsohl Member Posts: 24

    One treatment down, 34 to go!

  • noey69
    noey69 Member Posts: 20

    Hi all!

    I will be having my mapping/ simulation tomorrow. RO said just 4 weeks treatment for me. Stage IIa - my tumor was less than 2cm and only 1 lymph node involved. I tend to have pretty sensitive skin (get rashes, burns easily). I'm sure that someone will go over creams/ care tomorrow, but I'd love any advice from others on what has worked if I find myself in that situation.

    I consider myself lucky in that I have a lot of sick days saved up, so I've decided to use them - just to reduce the whole level of stress of scheduling, commuting, etc.

    Best of luck to everyone here!


  • cheftoast
    cheftoast Member Posts: 24

    I just finished radiation today, and there was no April group, so I'm just saying hi here and hoping I can be useful. I had stage 2 ILC/DCIS removed in an oncoplastic breast reduction, clear margins, then 16 whole-breast radiation treatments and 2 boosts.

    I also did the breath holds to keep the heart out of the way. It was easy and yes, the machine will stop if you have to breathe or cough or whatever. You can't screw it up!

    One thing I wish I'd done ahead of time was set aside old t-shirts I didn't mind getting Aquaphor all over. A lot of it will wash out, but it can leave a greasy stain. You'll also want some super-duper soft, non-underwire bras, if you need to wear a bra. Later in the process, they're helpful to hold soothing dressings in place. I have "anchor" incisions that got aggravated by the radiation, so soft bras with a really wide band at the bottom were best.

    My RO said that they can sometimes do women with larger breasts in a prone position, so the breasts hang down. But a) I'd had a reduction, so it was painful to lie on my rack, and b) the RO said that sometimes gravity makes the heart go lower in that position anyway. They figure all this out at the mapping. Also, at the first check-in with the RO after I started, she showed me all the scans to see how they avoid the heart, how my lungs were safely away from the rays, etc. It is really cool! If your RO doesn't offer, you can ask to see them.

    After 4 weeks my irradiated breast is looking a bit like a cooked lobster, but it's bearable. The nurses told me preventative lotioning doesn't seem to make a difference in whose skin reacts and whose doesn't. Just start applying the stuff when you need it, then apply more. I used Aquaphor. The nurses can give you gauze pads or tell you what to buy at the drugstore if you're worried about ruining your bras. After the first two weeks, they also gave me an antibacterial soap to wash with before I used Aquaphor. This might have been because I'd had surgery -- the RO said "Everything else will go away, but we want to avoid an infection!"

    Because I had surgery, the inside of my breast is really sore, too. The "zingers" i had after surgery have come back and they are AGGRESSIVE. This is also pretty standard, apparently, and I can take tylenol or advil or whatever. Honestly, though, my rack has been uncomfortable since the biopsies started, so this is just more of the same and I haven't taken anything.

    The only other thing I'll add is that I'm now wearing a soft bra to bed to keep things in place. Every time I turned over they were jostling around and waking me up. This will pass, though! All of this will pass.

    Radiation is weird and sci-fi-y at first, but you'll get into a rhythm within days. Then you'll be a pro. Today I'm so glad to be done, but I kind of miss my team? At the same time, I'll be glad if I never see them again. Good luck to y'all!


  • hippmark
    hippmark Member Posts: 92

    I had my 9th treatment of 30 today (25 all over and 5 boosts).

    My skin seems to be doing ok so far. No redness or rash. Today, I noticed the side near my armpit and ribcage were starting to get sore. I am going all the way under armpit and up to my clavicle as I had one positive node. I wondered when I would start seeing something! I try to stretch that side out every day.

    The treatment is fast for me. It's only 10 minutes and that includes getting undressed. I am not in an uncomfortable position. It is my right side, so I do not need to hold my breath.

    3x a day I coat the skin with Rejuvaskin and Aquaphor. I also got some old t-shirts before I started treatment and let them just get all greased up!

    Monday, I will be 1/3 the way through. Wish I was having fewer treatments, but 6 weeks it is!




  • BbyMom
    BbyMom Member Posts: 31

    Hello everyone! I logged on here to check if a May 2022 thread has been started and was so happy to see that it has and already has so much activity! Thank you for all the helpful information and for sharing your experiences. It's so great to have company through this process.

    I just completed my 3rd treatment today out of 15 whole-breast rads to my right breast (I had DCIS that was removed but I still have some remaining calcifications). So far my experience hasn't been too bad other than my lumpectomy scar tissue (and my not-fully-healed seroma?) that feels hard and is making my breast look strange. My surgical incision scar is tender too - my surgeon used part of the nipple line for the incision and it must not have fully healed even though it looked pretty good before radiation started. Otherwise all seems ok thus far. I do have very fair and sensitive skin so I'm a bit worried and have been using lots of lotion and staying hydrated. I see that lots of people use Aquaphor but my radiation oncologist recommended moisturizers with Water/Aqua as the first ingredient so I've been using CeraVe Moisturizing Cream for now but may pick up some Aquaphor too. I have also been using a bit of propolis cream on my irritated incision site and just read a study that propolis can reduce radiation-induced skin damage so will check into that further and ask my radiation oncologist. A friend also recommended rose hip oil as it's natural and nourishing and anti-inflammatory. There are so many choices! I need to learn more.

    Have a great weekend!

  • 1982m
    1982m Member Posts: 224

    Welcome bbymom,

    I’m very light skinned and moderately sensitive and have completed 14/15 whole breast radiation. My skin is holding up really well according to the team. It’s a bit itchy so I’ve been using saline soaks, but otherwise good! It’s still only slightly red. I did have a oncoplastic lumpectomy and I’ve read smaller breast tend to do better. Mine are still a moderate breast (32D) but holding up well.

    My biggest complaint is fatigue. I was fine the first 6 treatments and then it hit me. Some days are literally awful fatigue, while other days seem to be more moderate. My last day is Monday May the 2nd and they said gets worse before better. I hope it’s just one more difficult week and then gets better.

    On a side note I am getting left sided radiation and am doing breadth hold technique. I asked about the plan and grays to my heart. My Dr. said 400 cGy (4 Gray) was the max limit they plan too. My plan I’ve gotten 2.5 cGy. I was happy to see that! I initially wanted a mastectomy to avoid the left side and I feel better knowing that.

  • BbyMom
    BbyMom Member Posts: 31

    1982m, congrats on being so close to completion and the good news about the lower cGy.. hopefully the worst of the fatigue is behind you, hang in there. I was a 34C but likely a B cup now on my right breast so hopefully that means I'll do ok (*fingers crossed*) . I just looked into oncoplastic lumpectomy and it sounds like it would have been a great option for me but I didn't know about it and it was never offered. Sigh...They removed quite a bit of tissue (I now have a divot) so reconstruction was offered and I have to October to decide at my next appt with the surgeon. After a biopsy and two lumpectomies I'm hesitant to sign up for more surgeries but may feel different once I see the full impact of radiation and more time passes.

    I thought I would start and be done with radiation sooner so I organized a 2 night camp for my Girl Guide unit in mid-May that requires ferry travel and more. I sure hope I do ok fatigue-wise but am looking for extra help now, just in case, as that will be at 2.5 weeks out of my 3-week radiation. In hindsight, I should have planned it for much later. Arg.


  • 1982m
    1982m Member Posts: 224

    Thank you bbymom! I finshed today! Yeah! It really does speed by.

    Honestly they did not offer me a oncoplastic lumpectomy- I had to advocate. I had a lumpectomy without it and at first was happy with it. But I ended up with a moderate divet after the seroma healed. I had a re-excision planned bc DCIS was in the margins so that's when I decided to find someone to do a oncoplastic lumpectomy. Much to my dismay, I caught Covid and they did the re-excision without the breast reduction so I had to wait to do that. The plastic surgeon I chose was amazing- I had to advocate for her too- but she made sure I got reconstruction before radiation. I’m so incredibly grateful for her. She cleaned out a big seroma from the re-excision and said I would have had a poor result after radiation.

    Finishing today with a total of 15 sessions totalling 50Gray I have a pink breast- maybe a 4/10 now? It's not completely painless but not painful. Mostly it feels a bit sore (2/10) to the armpit area. I was really careful to apply lotion since I heard that's a tender area. Itchiness comes and goes but very tolerable. Fatigue also comes in waves. It is better this weekend and today then last week. I'm already on tamoxifen, which for myself is a bit of relief. I'm happy I've been on it for 6+ weeks now so one less thing to worry about.

    I'll keep rooting for you May people! I struggled mentally during this part of treatment. A YouTuber who did radiation said something about how difficult it was and just do one day at a time and I really had to stick with that. On those really difficult days I just said 'I just have to go today. Today I'll go'

  • pokemom1959
    pokemom1959 Member Posts: 67

    My radiation is starting Wednesday. I’m a little nervous but ready to go and get this behind me. Had an unrelated colonoscopy today (which was clean) but the fun never stops

  • 1982m
    1982m Member Posts: 224

    Glad to hear you had a clean colonoscopy pokemom.

    Anything particular your concerned about? Or just in general?

  • pokemom1959
    pokemom1959 Member Posts: 67

    I've always had some rectal bleeding and understood that it was caused by hemorrhoids or a fissure, but during chemo, I would have constipation the week after and I would have a lot of bleeding (probably from straining and then from frequency after I took a laxative). My medical oncologist wanted me to get the colonoscopy just to be sure (plus it had been 10 years since my last one so I was due).

  • 1982m
    1982m Member Posts: 224

    Glad to hear your colonoscopy went well. I hope you sail through radiation.

  • pokemom1959
    pokemom1959 Member Posts: 67

    I hope so too. They said that tomorrow all of the doctors will be there and they will do a practice session before we do the first actual session. Here's to hoping no radiation burns or bad side effects. 1982m, I'm jealous that you are done but also so happy for you. Must be such a relief!

    Did anyone find that the breast that was getting the radiation shrunk? I had a bilateral reduction and right now, both sides are about the same size. I'm hoping the radiated breast does not shrink or at least not by much.

  • pokemom1959
    pokemom1959 Member Posts: 67

    1 down. 32 to go. LOL

  • 1982m
    1982m Member Posts: 224

    Congrats on getting the first one done! Honestly it sailed by. It feels long and hard when your in it- but it went by so quickly (for me atleast).

    I had a oncoplastic reduction as well and both my breast are so far the same size, but I'm not even a week out. My plastic surgeon said that the one may shrink. It can happen within the first year. She said she could reduce the other one a bit if it shrinks if I want. Although, my breast fit my frame so I'm not crazy about having them get smaller.

    I had a good full day today. I definitely don't think things are getting noticeably worse. I felt good energy wise today (which makes me incredibly happy). I am pink and itchy but soooo manageable. I am still doing saline soaks once or twice a day. I can tell it's a bit swollen but nothing alarming. Occasionally get a twinge of pain.

    Radiation was hardest I think bc of my emotions- it all came undone for me. But physically if I keep recovering well, I'll be happy I chose radiation.

  • pokemom1959
    pokemom1959 Member Posts: 67

    I got eyebrows tattooed on (microblading to add hair strokes in 8 weeks) so I'm feeling pretty good today. :)

    1982 - I'm glad yours sails by - I hope mine does too. Amazing how fast the appointments go after the first one.

    Hugs to you all!

  • hippmark
    hippmark Member Posts: 92

    1/2 way through rad treatments! (15 of 30 complete). My skin is holding up very well. Just a little bit pink. My RO said to keep up whatever I am doing. I don't know how it will end up, but I will take where I am at for right now. My only issue is swelling in throat and some soreness from rads past clavicle. It makes it more difficult to swallow and I have to eat soft foods slowly. Big bummer. 10 more treatments whole breast, lymphs, clavicle and then 5 boosts. Onward we go!

  • cheftoast
    cheftoast Member Posts: 24

    pokemom 1959, I had an oncoplastic reduction and the plastic surgeon left the cancer breast about 10% bigger to allow for shrinkage from radiation. It is unlikely to shrink more than that. I finished rads a week ago and it’s still bigger, but also it’s still pretty inflamed. The RO wondered if it wouldn’t shrink that much because my tissue is so dense.

    All of which is to say, it’ll keep changing for many months and I won’t know for a while. I saw the SO this week and she said they looked about the same. Most women have one side bigger than the other, so as long as it’s not dramatic we’re probably good. Fingers crossed

  • 1982m
    1982m Member Posts: 224

    congrats hippmark on the halfway mark! Yeah! I marked it in my calendar and there was a bit of relief having more behind then ahead.

    I’m 1 week post rads today. I’m feel like I’m not getting worse and that I’m healing. My worst day for fatigue was the last week of rads and then the day after my last radiation. I’m tried but very acceptable level. I can do everything I need to without much trouble. A bit of itchiness still which is annoying. Mostly along the breast scar underneath.

    My daughter has swimming lessons starting tomorrow. The city I live in makes them parented due to Covid so Im a bit nervous. I booked them to early for my husband to regularly take her. My skin is intact so I think I’ll be ok if I shower immediately after.

  • nns121317
    nns121317 Member Posts: 106

    One down for me, 29ish to go! It wasn't bad, and the staff seems pretty efficient. I can see how it might be a lot for someone who just had surgery and doesn't have good mobility/flexibility, or those who can't hold their breath very long.

    I had to get a blood transfusion over the weekend because my hemoglobin was way low. This came as a shock, my labs were normal all during chemo, and my last infusion was almost a month ago. I see the MO tomorrow to discuss next steps, but it has me quite concerned.

  • hippmark
    hippmark Member Posts: 92

    nns, so sorry to hear of your blood transfusion! Please let us know what your MO says! Hugs!

  • sallyred
    sallyred Member Posts: 24

    I had my CT scan and mapping yesterday, and will have my first (of 21) radiation treatments on May 17. I have cruised through chemotherapy and a lumpectomy, and am doing pretty well with the anastrozole, so am surprised that I'm feeling unprepared for the radiation. A clue - I'm angry over the 3 tattoos that they do; for me, it's a sign of how little "quality of life/survivorship" plays a part or is considered - still! - for BC. I realize this is unreasonable, and that we are in a much more patient-oriented approach than in years past. And I'm lucky lucky lucky from finding the lump all the way through this point. Still ... does it have to be BLACK ink? (no - there's actually UV ink, but not at my cancer center).

    I believe my attitude to this point and my focus on staying healthy and in control of as much of my environment (food, body, exercise) as possible has really made a difference for me. I am trying to figure out my feelings so that I can prepare for my treatments - I've got a week!

  • sallyred
    sallyred Member Posts: 24

    Is anyone here familiar with swimming in pools sanitized by hydrogen peroxide and UV instead of chlorine? I've been told not to swim (or even submerge my breasts) because the chlorine in pools is so hard on our skin. The pool I normally go to doesn't use chlorine, and uses hydrogen peroxide and UV instead. I don't know what a swim suit would feel like on radiated skin after a few weeks (not good, I'd imagine). If I could use the pool for a couple of weeks until then, it would be a lovely thing. I'm not willing to risk it without more information, though!