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Fall/Winter 2023/2024 Radiation Thread

Gather here to share experiences, ask question, get encouragement, and support others who are going through radiation therapy along with you. Please share your diagnosis, any previous treatment you've had, and your scheduled start date along with your radiation schedule. We're all here for you!

Comments

  • jezzy234
    jezzy234 Member Posts: 127

    I have a new primary and am starting radiation next week. It will be in the left breast. What can I expect?

  • aromaof9
    aromaof9 Member Posts: 2

    I’ve had only 2 radiation treatments so far. No sensation during treatment. Most important thing is to keep skin well moisturized but not in the 4 hours before treatment. Use moisturizer with no fragrance. My radiation oncologist also prescribed a steroid cream that he said studies showed was very helpful in preventing skin problems.

    I do tire easily and usually sleep a couple of hours after treatment

  • sunshine99
    sunshine99 Member Posts: 2,474

    I just started radiation yesterday for mets to my esophagus. Never had rads to the breast but did have it to my spine/hip/femur when I was first diagnosed with mets. Will have 10 treatments total. No mention of creams, steroids, etc. I was told that I'd start to feel better and then worse as the esophagus reacts to the rads. Am hoping to avoid a feeding tube.

  • salamandra
    salamandra Member Posts: 725

    I also just started treatment for a new primary, left breast. Today was my second day. The whole thing feels much easier than the first time, even with the extra element of the breath hold. I think there have been some improvements in the technology - I'm able to lie there in a very natural and comfortable position.

    Last time I took off work (I was working in a very stressful setting). This time I am trying to work through, but we'll see.

  • sunshine99
    sunshine99 Member Posts: 2,474

    salamandra, mine seems different, too. I even asked the techs yesterday about skin care and they said I didn't need to do anything special. I'm trying to find the report, but apparently it's not the same type of radiation as with the breast. I actually did not have radiation to the breast with my Stage II cancer, but did have it to my spine, hip and femur in 2020. It does amaze me how quick it goes, though. Line up the tats, put the cage thingy over me and zap away.

    I'm tired, but that's nothing new. Will hope this round is easy on you (although we want it to do its job, right?)

    Carol

  • jezzy234
    jezzy234 Member Posts: 127

    Thank you for your response. I am now 7 radiation treatments in and it has been easier than I remember from the last time , 15 years ago. I am little more tired than I remember, but it goes quickly. I have noticed my skin feels tight and has a sand papery feel to it.

  • zazzismom
    zazzismom Member Posts: 3
    edited January 15

    How to decide on radiation???

    Hi all. First time posting. Radiation is optional for me. The radiation oncologist recommends partial right breast radiation 5x over 10 days. He makes it sound easy with minimal side effects. Does anyone have experience with this type of radiation they can share?

    I am also on the fence about taking the Femara (Letrozole) because of the possible side effects. Menopause is hard enough without increasing symptoms! I see the oncologist about it tomorrow.

    Thanks,

    Kay

  • maggie15
    maggie15 Member Posts: 766

    I would imagine that radiation is optional for you if you take letrozole or another aromatase inhibitor. If you decline the AI you should probably opt for radiation. Check with both your MO and RO before making your decision. I hope whatever you decide to do goes well.

  • moderators
    moderators Posts: 7,683

    @zazzismom - Hello and welcome! 🌸 We're glad you've joined our community. Our members have a lot of experience, so we're sure you'll find some good advice and support here.

    We came across a study on our main site that might be helpful for your decision-making process regarding radiation. It's called 'ASTRO Updates Partial-Breast Radiation Guidelines.' We hope that it is a useful resource for you. If you have any questions or want to discuss it further, feel free to reach out. And please, come back to let us know how it goes at your appointment tomorrow.

    Wishing you the best!

    The Mods

  • shrinkrap59
    shrinkrap59 Member Posts: 28
    edited January 16

    Hello all! I hope everyone is having their best possible day. 🌺

    Would anyone be willing to share how far they drive for their radiation treatment? I have a choice between a place about 39 minutes away (depending on the time of day) with a radiation oncologist who attends the same tumor board as medical and surgical radiologist, and "state of the art equipment", and one 26 minutes away, a machine that is at the "end of life", and radiation oncologist with a different group. I'm concerned the last week or two may be too much of a challenge, although that could be true at either place, and I'm considering staying somewhere closer.

    I can get drivers sometimes, but I want to consider all the pieces.

    I'm wondering

    1)How far do you drive and

    2) have you considered missing appointments because of the drive?

    TThanks in advance!

  • maggie15
    maggie15 Member Posts: 766
    edited January 16

    Hi shrinkrap, State of the art equipment and an RO who works with the rest of your medical team are worth the extra 13 minutes drive. Old machines break down more frequently which can mean a wasted trip. You might have to roll up a towel for under the seatbelt to drive comfortably.

    I travelled 100 miles. My local rural hospital had dropped the ball on my diagnosis timeline, biopsy and initial path report so I figured my health was worth it. It involved an over 2 hr drive each day, staying 3 nights a week at a hospital-owned hostel (sleeping bag, shared bathroom but inexpensive) and an awesome scheduler who gave me late or early appointments including Saturday AM depending on what I needed. I taught online the entire 4 weeks (24 sessions.) Radiation does make you tired but the exhaustion didn't really hit until a couple of weeks after I finished and school was out.

  • sunshine99
    sunshine99 Member Posts: 2,474

    Wow, I’m almost embarrassed to say that my radiation is 18 minutes away without traffic. My DH drives me to all of my appointments, although a neighbor did drive me to one appointment last week. I’m very thankful to live so close.

    i think I would choose the best available, too.

  • salamandra
    salamandra Member Posts: 725

    I take the subway, it's about 45min-1 hour each way, depending if I'm coming from work or home, and train delays and connections.

    It's a pain in the butt, but so far my butt has been lucky getting seats, and it's only for a month, and I think it's worth it.

  • sunshine99
    sunshine99 Member Posts: 2,474
    edited January 18

    Last session of 10 is tomorrow. RO’s nurse gave me a referral to see an oncology dietitian since I can’t eat enough to keep my weight stable. Down another two pounds in the last week. Fatigue and nausea are the pits. I’m down about 20 pounds since May.

  • shrinkrap59
    shrinkrap59 Member Posts: 28

    Great insights! Thank you @maggie15 , @sunshine99 , @salamander2023 ! Thank you for taking the time to be here, and the time to respond.


    I hope I haven't missed anyone! If so; thank you too! 💚🩷

  • zazzismom
    zazzismom Member Posts: 3

    You're right in that the RO said he thinks I should do radiation if I choose not to take the aromatase inhibitor (Femara). Thanks for your input!

    Radiation reduces my chance of recurrence in the same breast from 10% down to 3%. Taking an AI for two years (I'm in an "ultralow" category based on testing, so would only need AI for 2 years) reduces my chance of metastasis by about 3% - raising the percentage from 94% to 97% that the cancer will not show up elsewhere. Of course, these small percentages represent 1,000s of women who did experience cancer again. I had a life-altering experience with gamma knife radiation for a benign brain tumor 7 years again so that definitely colors my decision making. This is so hard!

  • zen1028
    zen1028 Member Posts: 25

    I started my radiation sessions at the start of this year. I am down to 7 sessions. So far I been lucky in terms of distance to travel as it is a less than 10 min drive. Just some tiredness creeping in late last week , no appetite/weight loss so far. The RO have given me 2 different moisturizes to use and been using them religiously after treatment, after shower, and in the mornings. I think this help to reduce symptoms on the treatment area on the left breast. Just some darkening of the skin noticed last week. So close to the finish line in this, can't wait. Then next up is tamoxifen along with lupron for the next 5 yrs.

  • jnr1983
    jnr1983 Member Posts: 2

    Hi, everyone! I should start radiation in the next couple of weeks. There has been some delays. My PS's office recommended Alastin Reform and Repair to help with radiation skin side effects. I'm going to make sure it's ok with my radiation team. Has anyone used it?

  • moderators
    moderators Posts: 7,683

    @jnr1983 - Welcome again! We're glad to have you here, although we hate the reason. We hope you receive helpful responses soon as you explore options for managing the side effects. In the meantime, here is an interesting article from our main site on How to manage skin side effects of radiation therapy. Hope it helps! Good luck with treatment, and feel free to share your experiences and ask questions. We're here for you!

    The Mods

  • salamandra
    salamandra Member Posts: 725
    edited January 23

    Did you not get any prescription from your rad onc?

    I got triamcinolone acetonide 0.1%. I started it the first day of radiation and am supposed to continue, morning and night, until two weeks after the end of radiation. I did some googling and there seems to be good evidence for it.

    My sweet brother bought me 'Remeverse radiation cream', and it feels very nice and smells nice, but I see it as an experience/sensation thing primarily, and the prescription cream as functional.

    (Last time I had radiation, 5 years ago, I was prescribed mometasone and recommended to use any ointment-like cream for comfort. I ended up using the Cerave oinment, which is very nice. They suggested without lanolin, but I think that's just because some people have sensitivities to lanolin, and I have read on these boards that people have used Aquaphor ointment, which does have lanolin).

    I googled the cream you linked, and from my totally amateur dabbles in skincare, it looks like a very nice mix of ingredients. I like glycerin and dimethicone a lot in moisturizers, and peptides are very 'hot' right now - although the evidence is still coming in both for the category in general and specific ones. If your onc team approves it, I would love to try it. But it's also super expensive and if money is tight for you, you can probably ask your PS for cheaper alternatives that bring a lot of similar qualities.

  • jnr1983
    jnr1983 Member Posts: 2

    Thank you for your advice. It was so kind of you to take time to answer, Salamandra. I really appreciate it. And thank you for looking at the ingredients to the lotion. I had my radiation doctor look at it and she okayed it. I'm super nervous about radiation...even after a grueling five and a half months of chemo. Prayers for all of you, your family and friends, and your health care providers.

  • shrinkrap59
    shrinkrap59 Member Posts: 28

    Best wishes to this "cohort"!

    My radiation will be delayed at least two more months ( 14 weeks from surgery) to allow a large hematoma to resolve. Apparently they are prone to becoming permanent fixtures if you apply radiation. I feel like I'm not doing anything;just waiting. Considering asking about pros and cons of starting the planned aromatase inhibitor while I "wait". Has anyone taken an aromatase inhibitor before radiotherapy? I assume I will then be faced with both therapies together when the RT finally starts.

  • maggie15
    maggie15 Member Posts: 766

    Shrinkrap, You can start AIs before radiation and take them concurrently. Many people start the AIs after RT so it is clear what to blame any SEs on. Given the wait for the hematoma to resolve you could discuss this with your MO. While AIs are fine my pulmonologist told me that radiation while taking tamoxifen can cause lung problems for some people.

  • sunshine99
    sunshine99 Member Posts: 2,474

    I also took AIs before/during radiation. I did wait to start a new oral chemo drug until I finished my latest round of radiation, but that's a whole different story. I know it's hard when you're waiting and feel like you're doing nothing.

  • doodler
    doodler Member Posts: 34
    edited February 13

    @shrinkrap59 I take an AI, letrozole, I'm into week 4. Still relatively new to it, but side effects for me so far have been minimal. I am not worried about that one, going into radiation therapy. Having said that it is different for everyone.

    I initially wasn't going to be getting radiation, but now it turns out that I will be getting a metastatic tumour zapped in a neck vertebrae. It'll be done over five sessions. And… I get to wear a mesh mask attached to the table to keep my head still during treatments.

    It's possible that I'll get a sore throat or neck pain for a while afterward (right now I don't have any pain on that spot). So much to worry about, but they seem confident that this will work OK.

    Good luck to everyone with your treatments.

  • lb13
    lb13 Member Posts: 41

    Hi all,

    I am having surgery this Thursday and supposed to start radiation April 1. I will have 25 targeted treatments this time. Had 30 whole breast / armpit the first time, which was four years ago. First time - I had horrific skin breakdown for about the last ten treatments. I mean bleeding/oozing, etc. Showering felt like someone throwing knives at me. It was miserable. I was in a Mepitel film trial at that time, and the skin under the Mepitel fared much better. I worked through all 30 treatments and plan on doing that this time as well.

    Best recommendations on creams / moisturizers to by prior to this round?