Starting radiation treatment in April, 2020

I'm starting my first of 30 radiation treatments on April 6, 2020. Hoping to have some company in this thread.

I had my simulation done today and will have x-rays done in a week. The center I'm using gives you the option of choosing to have pen markings instead of tattoos. I chose pen markings. The simulation went without a hitch and the process from start to finish was less than an hour. Staff was pleasant and prepared to keep us all safe.

Glad to be getting on to the next part of my treatment.

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Comments

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited March 2020

    I will be joining you, but I don't have an exact date yet. I had a consult this past Tuesday and will have mapping on Monday, March 30th. My doctor and the scheduler both told me to expect to start treatments 7-10 days after the mapping. I will have 16 treatments followed by four boosts.

  • striveforhealth
    striveforhealth Member Posts: 121
    edited March 2020

    Welcome TrixieBlue. Looks like we had our surgery on the same date! Wishing you well as you get things started for your radiation treatments. We can travel this road together. :-)

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited March 2020

    Thank you, my mother-in-law had DCIS over ten years ago and she said the radiation treatment was nothing to worry about. She went every day before work for six weeks and had very few side effects.

  • cyathea
    cyathea Member Posts: 338
    edited March 2020

    Hi TrixieBlue and striveforhealth, I think I will be joining you towards the end of April. I had surgery last week and I just talked to the surgeon about the path report. She reviewed my case with the radiation oncologist and he recommended radiation on my right side.

    Since you are both ahead of me, I will be eager to track your posts on how things go for you. I wish you both easy treatments. My sister had radiation a few years ago and she had very few issues. I think they have made many improvements to radiation treatments in recent years so I expect that we will all be fine.

    Take care.

  • Floral
    Floral Member Posts: 41
    edited March 2020

    I will be starting radiation on 3/30. Don't know how long it will be, I'll find out when I get there. I'm hoping to have it "after" work, but the office only works until about 3:30 and I work until 4:00, so I'm going to be cutting into work time. I didn't want to do it and then go to work, but I could if I had to. My hospital is very close to my work.

    My big worry is that I will get started and then get the corona virus and have to stop for a period of time.

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited March 2020

    I asked the radiation oncologist about coronavirus and treatment. She said they have contingency plans in place and patients will be able to continue treatment even if a staff member gets sick. She said I should focus on taking care of myself and staying isolated, which is easy enough since I'm a teacher and we are on the longest spring break ever. The silver lining in this mess is that I can go for my treatments any time during the day since we will be teaching online and we can choose our own hours for student contact.

  • Mudstick
    Mudstick Member Posts: 100
    edited March 2020

    I’m probably joining this April group 😁 I have my Planning Session booked April 1st and first treatment scheduled April 9.

    However, this hinges on my MO appointment on March 31 to discuss systematic treatment, as I’m dealing with a recurrence. So far all my other Docs have predicted that the recommendation will likely be stopping tamoxifen and beginning ovarian suppression + AI, as opposed to chemo.

    We shall see soon enough....my stress and anxiety has been high recently with Covid, working full time (from home) and looking after my 2 young school aged kids while the schools are closed.

    Wishing everyone the best and hoping you stay healthy

  • striveforhealth
    striveforhealth Member Posts: 121
    edited March 2020

    Welcome cyathea, Floral and Mudstick. Thanks for checking out this thread. It's nice to have a place to come and talk about the radiation journey.

  • Eigna
    Eigna Member Posts: 438
    edited March 2020

    Hello ladies.

    Im starting tomorrow! I have 20 treatments in total. Will let you know how it goes tomorrow.

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited March 2020

    I had my mapping this morning and it was uneventful, other than visitors are no longer allowed. I'm being treated at a cancer center next to a major hospital and it is usually a 30+ minute drive in heavy traffic with a crazy parking situation. It took less than 15 minutes today and I parked right up front.

    The doctor and tech both said I should be able to start actual treatments in the next 7-10 days.

  • striveforhealth
    striveforhealth Member Posts: 121
    edited March 2020

    Welcome Eigna. Wishing you luck with your radiation. Let us know how you are making out along the way.

    TrixieBlue... I'm wondering if they talked to you about protecting your heart and lung with a left sided radiation treatment?

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited April 2020

    Striveforhealth, yes they did talk about protecting my heart and lungs. My center does DIBH (deep inspiration breath hold) and my heart was 1 cm out of the treatment field and I had no trouble holding my breath for 30+ seconds consistently. Their goal is 0.5 cm and 25 seconds, so they were pretty happy about that.

    I have not really seen this posted much anywhere, but the radiation oncologist said she felt like the only long-lasting side effect I might have are weaker ribs on my left side. She said if I were ever in a car accident where the seat belt locked up suddenly and the air bag deployed, I might end up breaking some ribs but even that would be unlikely.

  • deanders
    deanders Member Posts: 66
    edited April 2020

    Hello Ladies! I'd like to jump in to this group as I start my radiation on April 2nd. I already had the mapping - like you all say - no big deal. Although they only do tattoos at my clinic so every one keeps telling me I got pen on my chest. LOL I just say thanks and act like I'm wiping it off. Think I'll get it tattooed a flesh color after I am done.

    I'll let you know how it all goes - I am a little worried about creams to use since most stores are sold out of everything health related. If all else fails I guess good old fashioned vaseline or aloe. Whatever - I think the lotion I use on my deflated breast is pretty much a 1st world problem right now!

    Be careful with covid - stay safe, healthy and good vibes only!

  • Mudstick
    Mudstick Member Posts: 100
    edited April 2020

    Welcome Everyone!

    Just wanted to update that my plans for radiation are in flux and my planning session booked today has been cancelled/postponed.

    My MO and I had a teleconference yesterday and he is ordering a Ki67 and bringing my case to the multidisciplinary (tumour) board for discussion on whether chemo should be offered for my recurrence. That is to take place next Tuesday (April 7) with a follow-up teleconference with me that afternoon with outcomes and recommendations.....

    Back on the waiting train!

  • striveforhealth
    striveforhealth Member Posts: 121
    edited April 2020

    TrixieBlue, thanks for sharing what the goals were for DIBH. I'm glad that you did well with it. I guess I will find out tomorrow if they utilize it at my center. I hope they do.

    deanders, good luck tomorrow with radiation. I start on the 6th. Keep in touch.

    Mudstick, sorry you must go back to waiting but I think it's positive that the tumor board will be reviewing your information and discussing what should be best for you. Keeping good thoughts for you!

  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited April 2020

    Hi all,

    I finished radiation a week ago, and wanted to tell you about something called Mepitel film that protected my skin from burning.

    After 16 sessions my skin looks completely normal, not even pink, under the film. However, a small part of radiated skin is exposed, where the Mepitel film peeled away close to the armpit. That skin is bright red. If anyone wants a photo to show to their RO I can private message it to you.

    A study from New Zealand, where the use of this film was pioneered for radiation, showed a 92 percent reduction in skin side effects.

    It's a thin film that you can order online or your hospital may have it. It's not too hard to apply, and needs changing anywhere from every few days to once a week. You keep it on 24/7, and don't do any skin care. It seems to work by reducing friction. You can shower with it on, although I always held a towel over it in the shower and aimed away.

    I had a mastectomy, so I thought the chest wall radiation would really burn, since I have no fat under my skin to help absorb it. My hospital doesn't routinely use Mepitel yet, but my RO agreed to ask the wound nurse to apply it for me. The wound nurse had a supply of it, and he dropped by just before I had my first radiation treatment to put it on. (Nothing different needs to be done to accommodate for it during your pre-treatment modelling appointment.) He showed the radiation techs how to do it, and they changed the film for me whenever it was starting to peel. They all thought it was easy to do -- most of the techs had experience already with different kinds of film. Because my chest is completely flat, it was simple and quick, i.e. a couple of minutes.

    You may have to politely insist to your RO that you should have it, but I think it's worth advocating for yourself in this way. Some on this site just went ahead and ordered it themselves and then learned how to apply it (it's just peel and stick, and use your tattoos for guidance).

    Here is the NZ study. You might want to print this and show it to your RO. Studies in North America are in progress as a result of this one. Good luck, and feel free to ask me any questions!

    https://www.ncbi.nlm.nih.gov/pubmed/24486117


  • callmeCookies
    callmeCookies Member Posts: 14
    edited April 2020

    Add me to the up-in-the-air in April group, lol. Just found out tomorrow's treatment planning appointment is going video.

    My lumpectomy was in January so I would have been done by now, but one margin was too close and here I am. Sigh. Hey, things could be a lot worse.

    Edit: Now we're looking at June and starting AIs right away instead. Fun!

  • striveforhealth
    striveforhealth Member Posts: 121
    edited April 2020

    Welcome to Brooklyn123 and thanks for the info on Mepital. It looks promising and we'll be interested to hear your experience with it.

    Welcome CallmeCookies. Feel free to check in here to see how April's rad patients are making out. Good luck with your endocrine meds.

    I had my x-rays yesterday at the center and I'm all set for my 1st treatment on Monday. Instead of 30, I will be having the hypo-fractionated protocol. 21 total to include 5 boosts. I met with the nurse who went over skin care mostly. Everyone was great and I felt comfortable. I didn't have contact with any other patients and only the 2 techs and nurse and 15 sec's with the RO! ;-)

    Looking forward to getting the show on the road and hope it goes well.

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited April 2020

    Update - I start on Tuesday, April 7. When I spoke to the tech, she told me to drive up to the patient dropoff loop and someone will screen me for coronavirus before I even get out of the car. After that, I am supposed to park and wait in my car until the tech calls me on my cell to let me know they're ready. Then I'm allowed into the building.

    Edited to add: Your car is now your personal private waiting room! Nobody is allowed to wait in the lobby waiting room for the duration. I'm not sure if that was clear from my original post.

  • Floral
    Floral Member Posts: 41
    edited April 2020

    Well, one week down and uneventful. I did ask my RO what would happen if I got corona and he told me that they haven’t had that happen yet, but they would continue to treat me unless I was in the hospital. That was a load off my mind. They would probably ask me to come at the end of the day, but I’m near the end anyway

  • callmeCookies
    callmeCookies Member Posts: 14
    edited April 2020

    Thanks, striveforhealth! Good luck to all with treatment, and stay safe and healthy.

  • elc75
    elc75 Member Posts: 19
    edited April 2020

    Hello! I start on 4/7 and am anxious to get it going and over with. I had my consult/mold last week and it was uneventful and easy. They do marker at my place so I have four marks covered in clear tape. The staff was very nice and I feel like I’m in good hands. Best of luck to all of you!

  • striveforhealth
    striveforhealth Member Posts: 121
    edited April 2020

    I had my 1st rads today. Easy peasy. One of the tapes covering a marker came off yesterday so they replaced it for me. I was in and out of there in no time.

    TrixieBlue and elc75, good luck starting tomorrow.

    Best of luck to everyone else posting here.

  • cyathea
    cyathea Member Posts: 338
    edited April 2020

    striveforhealth, TrixieBlue, Floral and elc75, I'm glad you have been able to start your treatment. I found out today, that my first appointment will be on 4/28 and I probably won't start treatments until May. I'll have four weeks of treatment on my right under arm and possibly some extra radiation at the end if my MRI shows some additional lesions on my spine. My MRI was canceled for today and it probably won't be done until next month due to coronavirus policies at the hospitals.

    callmeCookies, I wish you an easy time with the AIs. From talking to my mom and sister, they can be difficult for some women.

    Brooklyn1234, I will ask my RO about Mepitel film. I'm curious how things are going for you.

    Mudstick, the waiting is so hard! I'm thinking of you.

    deanders, were you able to find some creams?

    Eigna, how are you doing? Have you had your second treatment yet?

  • LB13
    LB13 Member Posts: 49
    edited April 2020

    Hi everyone,

    I had a right side lumpectomy on February 25th and go for radiation mapping and simulation (as of now due to COVID-19) on April 20th. I will be having radiation to my underarm as well as I had one positive lymph node.I have felt relatively well since the surgery, do oncology PT exercises daily and have my full range of motion in my right arm. The scar on my breast is pale and just a bit rigid, and the one under my arm is darker but healing. I am scheduled for 30 treatments over six weeks. Our hospital also uses Mepitel film and told me it should reduce the burning significantly. I am educated and aware of what is to come, but still a bit anxious. I am SO grateful I was told chemotherapy would not be beneficial when I received my Mammaprint results.

    I am sure - like many of you - this has been a total emotional rollercoaster. I have kept a positive attitude the entire time, but sometimes am still in disbelief that I am now a cancer patient. As they say - life before breast cancer and life after are two very different things. The fear will never leave.

    Hope you are all staying healthy and safe. Wishing each of you the very best. :)

  • OnlyGirlof5
    OnlyGirlof5 Member Posts: 78
    edited April 2020

    Hi everyone,

    I may be joining the group. I have my RO consult by video on Thursday and will find out if I will need radiation and when it might start. I may be delayed until May or June due to the virus case numbers growing here in Michigan. Meanwhile, my MO started me on Tamoxifen.

  • TrixieBlue
    TrixieBlue Member Posts: 21
    edited April 2020

    I had my first session today and I wasn't prepared for the intense emotions. I had a lot of trouble hitting my target breathing, but the staff didn't give up and coached me through it. I'm home now and slathered in Aquaphor.

    I did feel very safe with all the protocols in place and there were stations everywhere with foam hand sanitizer. I never saw another patient when I was inside the building, even though there were plenty of cars in the parking lot.

  • elc75
    elc75 Member Posts: 19
    edited April 2020

    I had my first one today too TrixieBlue and I also felt very safe and saw very few human beings! They did an extensive set of x-rays first which was the worst part because my arms were above my head and I couldn’t move. The actual radiation took 6 minutes. I was a little anxious going in and was getting chemo flashbacks but it honestly wasn’t worth getting worked up about. 1 down 29 to go.

  • katej128
    katej128 Member Posts: 21
    edited April 2020

    I start radiation on Monday. I'm doing Accelerated Whole Breast Irradiation With Hypofractionation Plus Concurrent Boost. aka. 15 treatments instead of 20. Less trips, less exposure to the virus. My RO shared info about all the research that proves cosmetic and functional outcomes are the same or better with this accelerated plan so I feel good about it. Anyone else on this accelerated plan?

  • Mudstick
    Mudstick Member Posts: 100
    edited April 2020

    I wanted to stop in and provide an update - After a discussion with the tumour board and the results of the Ki67 (17.2%) chemo is being recommended for my recurrence. I'll be moving over to the April chemo board, I guess. I'm happy to finally have a plan (start date likely still 2-3 weeks away), but of course very nervous about...well...everything!

    I wish all you lovely women the best with your treatments. Stay healthy and safe.

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