MARCH 2018 starting RADIATION

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  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    marigold - holey moley, thanks for sharing that! I'm going to start boosts soon and I have wondered where the chip might have wandered to, what the area looks like now that I had the giant hemotoma (from the stereotactic biopsy) scar removed and "things moved around" inside for cosmetic appeal (according to my SO). I'm like, who is keeping track of this? I asked my RO where they'd boost last week and she vaguely pointed to where the biopsy hole/scar is. Well, I'm told the extra DCIS they found was nearer the armpit area than that. So yeah, I'm going to ask again.

    Irene - interesting. Are you saying they are increasing your "grays" (ie measure of radiation) because of skin color?

    Paco - LOL, I knew you'd go there. Rad-fear

    Smile

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  • DoubleBloom
    DoubleBloom Member Posts: 67
    edited April 2018

    Greetings across the miles!

    Today I completed 24 / 28. I finally felt fatigue creep in earlier this week. I don't nap during the day but do crash earlier than my normal bedtime. Though I feel more tired I'm still able to walk almost daily and keep a fairly active routine. I know that fatigue comes in part because of the release of cytokines from radiated tissue. I wonder if I feel less fatigued than others because I don't have much of any breast tissue left after a double mx, and I'm therefore releasing fewer cytokines. I asked my RO about this and she said that there weren't enough studies done to accurately answer that question. I guess that's low on the priority list as studies go...

    My skin is red, raw, and painful particularly under my armpit. My RO friend (not my doc) suggested Mepilex Foam Dressings (without an adhesive border) available on Amazon in various sizes. It's not the cheapest pricing but boy did it make a difference in my pain level. The foam sticks to my skin even when I slather on my creams and helps to prevent clothing or the skin on my upper arm from irritating the affected area. I find myself feeling extremely grateful for the advances in medical care!

    I appreciate the earlier discussion (prompted by Paco?) on how different our treatments can be. That makes sense considering all of our different types and stages of cancer. There is no "one size fits all" answer or solution for any of us. I admire and respect each of you for your uniqueness as we all come together to conquer cancer!

    Have a happy weekend!


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  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    This is my cousin and me in the waiting room at rads today. We are second cousins who did not know the other existed until a year or so ago. Neither of us knew the other had breast cancer, we jjust wound up in the same waiting room at the same time for the same reason every day. It's amazing. It's a blessing

    image

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Hi All,

    Today was 21/21 and I rang the bell. Staff was clapping, it was a little embarrassing but I'm finished with treatments!! Had a short meeting with the RO who said my skin looked good, and to continue the Miaderm for the next several weeks and then the pinkish skin should disappear. No xrays during the Boosts. Will have a follow up app't in 6 weeks.

    Had a nightmare drive back home. Were having a huge rain storm predicted for 2 more days. Just as we're leaving town and entered a bridge of sorts (no exits until you get to the end), the back tire of our van blows out due to hitting the hugely pitted roadway. Luckily, was able to get off to the side of the road. It's a driving rain storm and the trucks are passing and spraying up the water. Hoping nobody hit us otherwise we'd be gone. Called road service and a truck came out pretty quickly but didn't have the correct size tool to reach the spare tire. UGH. Never had attempted to get the spare out and bought the van used so just assumed it came with the correct tools. Road service called another service truck with a flat bed on it which took a while to arrive, loaded our car on and drove us to a discount family run tire store. Bought a used tire for $39 including installation. So 4 hours after leaving treatment I'm finally home.

    I hope everyone has a good weekend.

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  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    Veeder!

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  • Cfarnell
    Cfarnell Member Posts: 6
    edited April 2018

    Kaywrite it is uncanny and amazing! So glad we overlapped. It came at just the right time.

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  • flowergal
    flowergal Member Posts: 167
    edited April 2018

    Congrats Veeder on getting finished with rads.! Bummer of a ride home but " Theres' no place like home" I have appreciated all your posts and ideas and have been speaking up now to make sure i know what is going to happen at each visit.I start my boosts next week and the tech explained what to expect which is SO important to reduce anxiety!! I had # 14of 20 today and felt some sluggishness in the pm but better now .

    Kaywrite- what a small world! You have your own support duo! Not sure 2 is a group!

    Everyone- Have a restful weekend ! I'm not cooking tonight. It's Pizza for me and the hubby!

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  • Marigold8
    Marigold8 Member Posts: 46
    edited April 2018

    Veeder14:

    Congratulations on the end of your radiation! So excited for you and for your healing!

    Sad to hear about your van but glad it's fixed and you are home. Enjoy!

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  • Marigold8
    Marigold8 Member Posts: 46
    edited April 2018

    kaywrite--Love your photo! How strange that you and your cousin are being treated for at the same place! It's nice to see our fellow travelers along the path of treatment, isn't it, whether in person or virtually? Thanks for sharing.

    I went to my first local support group the other evening (although I was kind of tired and unfocused). Some of the women there had been treated more than a decade ago. It's always great to meet people who have survived long-term. They meet monthly so I plan to continue going because it can be a little lonely out there. No one among my friends has been treated for BC.

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  • Paco
    Paco Member Posts: 208
    edited April 2018

    kaywrite, love the pic! Pity for the reason for the family reunion, but it must be so nice to have the support!

    Veeder, congrats on finishing treatment, and just in time for the weekend! Enjoy!

    Flowergal, pizza with the hubby sounds like the perfect Friday night!

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Hi metoo2018,

    I asked the question about the red light this morning because I've seen it also. There is a laser built into the walls opposite of the machine, that is used to line your body up, so each wall's laser projects light in line towards the table from opposite sides. Sometimes it runs as the treatment is going or sometimes just as it starts as your treatment begins, and that's the red light you see. So just an additional check to make sure things are correct.

    It's funny but on my last day today the tech took the time to explain how the machine works. I didn't ask before because I just want to get in and out asap.

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  • DoubleBloom
    DoubleBloom Member Posts: 67
    edited April 2018

    Veeder, Ha! I've been asking questions too. I'm like a three year old pointing to everything on the machine and in the room asking "what that!" :) Congrats on completing rads. I hope you had a blissful night's sleep after that harrowing ride home.

    Kaywright, I loved your picture and still get goosebumps everytime I think about your chance reunion.

    Marigold, I'm happy that you found a support group to help with that sense of feeling lonely. Despite all the support of friends and family, it's nice to share notes with someone who has been there and done that. I love that members have been there for 12 or more years. Now that is community service!

    Flowergal, I'm now craving pizza!!

    InfJen, I've also noticed sudden redness hours after treatment. How's your skin holding up?

    May the Radiation Gods bless each and everyone of us in this forum and others...

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Thanks DoubleBlooming,

    Thanks. A good nights sleep. Now heading to the tire store for 4 new tires.My Boost area doesn't even look red this morning but I'll keep putting on the Miaderm. The RO wanted me to continue until my follow up in 6 weeks. I'll probably have to order more. I hope everyone has a nice weekend.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited April 2018

    Veeder, never thought of needing to buy new tires as a blessing before! So glad you got home safely and had a good night's sleep. May your skin so continue to do well--I'm told the rads will have effects on the skin for at least a week or two after finishing.

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  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    Veeder - I missed the part about the blow out on a bridge in the rain - which of course happens after you finish rads and get to go home because, why not? Ugh. Glad it wasn't worse. I am 12/21 in and no significant change in my skin, either. Hope it stays that way. What is next for you? Hormone therapy? Are you finished with the boards? I'm not sure how people stay in touch as the course of one treatment ends and another begins. I've grown attached to the March rads girls

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  • flowergal
    flowergal Member Posts: 167
    edited April 2018

    Hi Kaywrite, I too enjoy the communication with this march group. Maybe we just keep this thread going. I have found it SO helpful to express things and learned a lot from others. Hope you have a good Sunday and continue with no problems.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Hi kaywrite and flowergal,

    Yes, we can keep this thread going. I will be here still maybe not as often. As far as my skin goes, it's kind of strange now. It gets real pink like it has since about half way through, then I put on the Miaderm and a few hours later it doesn't look pink. I don't know how long this will go on but hopefully one of these days coming up, my skin won't be pink at all. It has never felt hot like a sunburn so I am happy about that. Yes, hormone therapy next. UGH, not looking forward to that. I'm taking a 3 month break first before starting and that's ok with the MO. You know how it feels like this process has been ongoing without a break even since the beginning diagnostics, to biopsy, to surgery, and then rads. My back/neck really need a break and I need to get my energy back. Have a good Sunday everyone.

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  • Meg101
    Meg101 Member Posts: 175
    edited April 2018

    Hi Everyone! It sounds like you are all doing quite well. I can't believe some have already finished. I've moved on to boosts. My RO said my skin will be healed by the end of boosts this Wednesday. In the meantime, I've ditched the bra, and I'm still using Aloe and Calendula cream on the treatment area.

    This group has been wonderful. It's been comforting to read about your experiences throughout this stage of treatment. But I must admit Marigold's experience with the RO targeting the wrong place on her breast was disconcerting. I'm glad that she spoke up and her RO handled the error with grace before it was too late.

    Kaywrite, I love the story and the picture of you and your cousin. It must be more than a coincidence that the two of you just happened to meet at this time in your lives and are receiving treatment at the same place.

    Veeder's commuting nightmare is over! Too bad it ended with a flat tire. I'm glad she made it home safely. Maybe she'll stick around a bit longer, or start a new thread about taking hormonals. I'm not looking forward to that phase.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Hi Meg101,

    Did your RO mean your skin won't be red anymore at the end of the Boosts? My RO said it will take 2 weeks for the radiation to leave my body and would still be red, and 4 more weeks to completely heal. I'm supposed to continue the lotion for the next 6 weeks. Yes, my commuting nightmare is over but I have to go back to the hospital tomorrow afternoon to see the surgeon to get this under arm seroma drained again. At least we'll be driving on 4 brand new tires and skipping that lane with the potholes.

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  • metoo2018
    metoo2018 Member Posts: 64
    edited April 2018

    Congratulations Veeder! And thank you for asking about the red light. I did ask a few more question on Friday as well - need to take control and not feel like I am bothersome or wasting their time! I am so glad you are now able to stay home - you have been through quite a bit and the ride home didn't help!

    Thank you for all of your posts and guidance as you were just ahead of many of us in the process and now - we will all follow you to the finish line! I will be 10 of 30 this afternoon and just noticing some minor itching for the first time but still no big deal.

    I did start my hormone therapy - Femara - a few weeks ago. I had finished a relatively easy menopause a few years back. Other than hot flashes I don't see much impact. The hot flashes are more frequent than I experienced naturally during menopause but not so severe that it impacts quality of life. I am worried about weight gain as I can't afford any of that! I didn't choose to wait until after RADS and now I am not sure why - I guess I just had the prescription so I just filled it.

    Have a good week ladies!

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  • INFJen
    INFJen Member Posts: 21
    edited April 2018

    Veeder14 - Congratulations!! Cannot wait to be done too.

    After the weekend break from rads, the pinkness has subsided. I'm sure it will flare back up when I get zapped today. Last 5 rads will be the boosts for me which will start Thursday. Counting down...

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  • petey111
    petey111 Member Posts: 183
    edited April 2018

    16/33 today. I asked if there was something to put underneath my breast in the crease because it was so irritated down there. They gave me a cloth with silver in it. The silver kills yeast and the cloth both helps keep the skin from rubbing against skin, but also helps keep it dry. They said no aquaphor down there in order to keep it dry and clean. She said they would use that more on the "outside/upper" parts of the breast. They said if it got worse or itchy to let them know because they would give a low-dose steroid for it. And there were other things they could try. This makes sense to try because I keep tucking my shirt up under there when I'm sitting around just to alleviate the minor irritation. Hopefully it works!

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  • Billb464
    Billb464 Member Posts: 62
    edited April 2018

    Good luck to everyone finishing up radiation soon. My last day was Thursday last week! I am just glad not having to go every afternoon, I feel for those that have to go far! My chest is turning from a red to tan, and I still have some itchy bumps, but the steroid does help. I also have a 4x4 square on my back shoulder that has some color too, looks funny. My collar bone is the only spot that is still sore and red. I will let everyone know how long it takes my skin to get back to normal.

    I did start my tamoxifen on Friday. After starting, I thought itwould be nice to go a few weeks without doing anything concerning cancer, but I am on spring break from school and thought if I am going to have SE I’d rather it be now than later. So far nothing remarkable.

    Again, happy for those that have finished 👍😄

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Thanks everyone, it's nice to be done. Went for a follow up with the surgeon today and to ask that another seroma in my underarm be drained and the first one that was drained be checked on. Surprise, what I was pointing to felt like a marble and the surgeon said that's not the seroma. He said it may be a reactionary lymph node and I'll be going for an ultrasound to see what it is. I was getting ready to ask if I had two seromas. When the surgeon drained the seroma the needle went through near the SLN scar and it caused a big bruise. I was worried at the time that the rads staff would question me but they didn't.

    I hope things didn't get screwed up and this is a positive lymph node but all the ones removed during surgery were negative. The MRI's didn't show any lymph node with inflammation nor by physical exam. After my post op app't, I returned to the clinic the following week and saw the NP. She was kind of rough with pressing under my arm and said that thing is hard so it's not a seroma, it's a hematoma. She made me mad and didn't offer any advice. Anyways, I know I've had this hard thing since after the surgery. Just when I thought I could relax for awhile, this comes up. UGH.


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  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    Oh Veeder - I'm sorry you have something else as a stressor. I wonder if these things are the new normal for us. That benign cyst they found the day before rads began really scared me - it was also a new lump, post-surgery. Take a deep breath.

    I am at 14/21 rads today, and seeing ro after. I'm asking for DETAILS on the area of the boost. I had two lumpectomies and strange margins, including that dirty anterior margin. I want facts

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  • Paco
    Paco Member Posts: 208
    edited April 2018

    Oh good for you Kay!

    I'm right behind you at 10/20 and I see the RO on Thursday. I am dying to know what you ask and what your RO says, since our dx is pretty similar, dirty anterior margins and all!

    Today I had imaging done. I haven't paid a copay or seen a EOB for any of the radiation yet. I think it will be a doozey of a bill. Oy vey!

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  • kaywrite
    kaywrite Member Posts: 219
    edited April 2018

    Paco - it's your lucky day - here is an artistic rendering of my boost area. LOLOL Seriously, I left home without my path reports, so drew my boobs on the front of an envelope along with the biopsy site and areola scar. The RO added her own side-boob drawing to show how the boost would skim the entire anterior quadrant where the dirty margin was - this is going to include the nipple, which is starting to burn a bit. The dark spot on the side-boob is her depiction of the seroma that filled with water after the lumpectomies - which they also use to track where to radiate, along with the clips the surgeon would have left there. I want to see those clips and that seroma! They will have the film up for me on Friday morning before the boost, with the RO there to point the way. Enjoy my artwork.

    image

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  • Irene1524
    Irene1524 Member Posts: 7
    edited April 2018

    Hi, kaywrite. No, they are not increasing my grays. The doctor said that the bolus acts as an extra layer of skin and that this tricks the beam into not going quite as deeply, but hitting the shallower areas more. Not sure I understand what she means, but I just had 21/33 today, and the skin under my arm definitely looks redder. The bolus does not seem to have affected the rest of me yet, though i’m sure it’s about to get worse, as that one spot under the arm appears to act as the canary in the mine

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  • Marigold8
    Marigold8 Member Posts: 46
    edited April 2018

    Update on my "boosts":

    Many of you read about my questions to the RO on the "boost" area outlined last week; my concerns and questions caused my RO to rethink the location and replan my "boosts". So I won't repeat that story.

    Today I went in and saw the RO to discuss the new plan. He showed me my MRI and CT scan and compared them to another patient's, in order to reveal how he usually plans for radiation and how different my MRI and CT scan looked from the one he considered a more typical set of images. They were significantly different in part because my surgery did not leave a large "hollow" area where my tumor had been. Also I had a second clip in my breast from a biopsy of an area that had proven benign, which is atypical. One of the problems for him, in his planning, was that he didn't have the MRI of the benign area which I had done in another medical center; he did not even know those images existed! (Not sure why that disconnect happened.) But it led him to conclude that the remaining clip area was in need of treatment because the surgeon had removed the clip from the tumor area.

    He then reviewed the new plan, which made more sense to me. And he thanked me for speaking up and apologized for difficulties. As I said to him, I wasn't trying to question his expertise--I just want the best possible outcome whatever that takes. This is a doctor who's earned my respect, I must say. It is rare for doctors (in my experience at least) to listen to a patient's concerns, be honest in his assessment, take into consideration what I'd asked about, and then take the time to reconsider his planning.

    After we spoke, the radiation technicians set me up for the new area, marked my skin, made a template for the boosts, took measurements, and confirmed with the RO before I had my first treatment.

    I am so happy I spoke up last week. If you have any doubts or concerns with your treatment, ask questions and keep asking until you understand what's going on. It was so worth it for me.

    Now I only have three treatments left to go!

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  • Marigold8
    Marigold8 Member Posts: 46
    edited April 2018

    Petey111--I'm having the same problem with under-breast irritation. I asked the RO today if I could wear a bra just to keep the skin separated when I sit down and he said to avoid it if possible and only wear a very soft bra in the area (NO wires!) for as short a time as possible. I do have steroid cream, which helps. But I'm eager to have treatment over with to allow my skin some time to heal.

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