Summer/Fall 2024 Radiation Support thread
Gather here to share experiences, ask questions, 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
-
hello, I’m new here, diagnosed in April with DCIS, ER+, Grade II, 58 years old. Had lumpectomy in the end of June and will start radiation soon (first visit at the Radiology will be Aug 23rd) Also got a prescription for Tamoxifen but didn’t start taking it yet. A bit worried about side effects of both things. The public hospital where I’m being treated is great, but they are overburdened, and I’m not getting a lot of information about my process, test results, instructions, what to expect from the treatments, etc, so I’m feeling a little lost. Best of luck and love to everyone!
0 -
there is a lot of helpful information on the radiation threads. One thing I read and did was to start moisturizing my skin a couple weeks before I started radiation. I used calendula cream in the morning on my breast and underarm. In the evenings before bed I used Aquafor. I continued to used both of these thoughout radiation and for a couple weeks after. My radiation oncologists office also gave me a prescription cream to use once a day that I would mix with the aquafor. I had no skin issues during radiation.
4 -
thank you @ann5631 for the advice, and I will check out the radiation threads! 🙏🌹
0 -
Hi @mariahelena65. I have almost an identical story - April DCIS diagnosis, ER+, Grade 3 and 57 years old. I started a 20-day radiation treatment course and have completed 6 treatments so far. My doctor advised moisturizing 3x/day using a calendula cream during the day (I am using Miaderm and like it a lot) and Aquafor at night. So far that has been working really well for me. The radiation treatments themselves are quite short (3 minutes or so), but once a week they do a set of x-rays, which requires a longer time. I had a lot of anxiety about the process which made the first day rough (as someone who grew up during the cold war, it's really hard to walk into a room with a nuclear warning on the vault door), but after that first day it has been very straightforward and do-able. My doc said symptoms have a roughly 2-week lag and peak 2 weeks after you complete treatment, so I'm preparing for fatigue to start to show up next week. My doctor also encouraged hydrating regularly, ensuring my diet has 60g+ of protein daily, and taking 30g/day of L-Glutamine amino acids (I buy this at natural grocery store and scoop powder into smoothies) to help manage side effects.
The other thing I did based on advice on this site was to shop for some soft unstructured bras, sized a little larger than usual to account for inflammation during tx. My hospital has a bra fitting service for breast cancer patients and I got one by AnaOno that I like, but I like the bralets from Harper Wilde even more.I hope you have a smooth treatment process.
4 -
Great post, @ttatahealth! Welcome to you and we are all here for you as you recover from your side effects. Hopefully the fatigue won't be too hard on you.
Let us know how we can help support you as you poke around the commmunity!
—The Mods
2 -
I have my first consultation with radiation oncologist on August 30. Looking for feedback on good sports bra. Tried the large Genie and it rolls up on my healing incision under my breast which is a swollen 38C cup.
1 -
thank you @ttatahealth for all the information, that’s really helpful! I had my first consultation at the radiology today, talked to a wonderful doctor and did the preparations, practicing breath holding, got the small tattooes etc. Since the surgery, I’ve been using a great post op bra, Carefix Tytex, model Mary, but my nurse told me that during radiation it’s best to not use any bra to not irritate the skin- makes sense, but it’s hard to imagine going from the nice support of the bra to not wearing any! 😬 Also wanted to ask- did you start taking Tamoxifen (or similar) already? I would like to wait until after the radiation treatments are finished , but have received contradicting opinions whether it’s OK to wait or not.
0 -
@mariahelena65 I have not started taking Tamoxifen yet. My medical oncologist said it was ok to hold off until after I had completed radiation therapy and that doing so would help isolate any side effects to figure out what was from radiation and what was from the Tamoxifen. I can imagine it varies from case to case and doctor to doctor, but I liked his approach (in part because I'm not excited to start taking tamoxifen).
0 -
@ttatahealth yes exactly, that’s what I was thinking, to be able to tell what side effects is from what. The radiology dr I saw today told me that I should start taking the Tamoxifen now, but I’m thinking I will wait. And your reply reassured me. Not looking forward to the Tamoxifen either….i already have most of the typical menopausal stuff, hot flashes, insomnia, dryness, joint pain, anxiety/depression etc etc and worrying that it will get even worse 😬
1 -
@dmataraz1 I don't have a sports bra recommendation, but I bought the triangle bralette from Harper Wilde after my lumpectomy and I've been really happy with it. I'm a 38C. It probably also depends where your scar is relative to where the band of the bra sits; mine was more on the side of my breast so I didn't have a problem with that. My best friend had breast reduction surgery (ie lots of scars on both sides) and she started using the same brand of bralette and also was really happy with it.
The other things I learned about post-lumpectomy that were helpful were to use ScarAway silicone sheets on the scar site (after your 2 week post-op, and with your doctor's permission) — it really does help with scar healing and 3 different doctors commented on how well it was healing. Also my massage therapist recommended doing gentle scar massage once you're 3-4 weeks post-op to help break up the scar tissues and pointed me toward this video. I did it daily for a month and I thought it really helped reduce the size of the stiff scar tissue that was forming. Again good to check with your doctor before doing it but I had good experience with it. Unfortunately I had to stop once I started radiation because tissues get tender.
4 -
@mariahelena65 I've had those same worries about side effects. I'm trying to take this all one day at a time and pull back from worrying about the treatment steps that lie ahead, but that can be hard to do. I had an initial meeting with my medical oncologist and I found it reassuring. He reminded me that I'm in the driver's seat there and that there are different options, both in drugs and in dosage, so I shouldn't feel totally locked in and afraid that I'm signing on for a miserable ride for the next 5 years. I've also heard people recommend finding a naturopath who specializes in menopause and cancer (I found one here in my city that I haven't been to yet) who might be able to help me manage some of the side effects.
This is all a lot, isn't it? Glad we can be here for each other.
2 -
thanks @ttatahealth for the scar massage link among all the other good tips! I had heard that it’s a good thing to do, but completely forgot about it until I saw your link. So many new things to keep track of, and to learn! Thankful for this forum. And yes I also try to not worry and think too much beforehand, but also been feeling a need to do some research to even know what the options are. Btw~ 60 gram of proteins- yes that’s probably good advice- I’m vegetarian , pretty much vegan and sometimes I struggle with getting enough protein, might have to eat some eggs,,, Good luck with the treatments! (I will probably start early September, 30 sessions planned, whew)
1 -
Hi ladies. Radiation is in my near future and I'm glad I found this group. Other groups have been so helpful in this journey!
I had my last TCHP chemo Aug 8th and surgery (lumpectomy and axillary node removal) is scheduled for Sept 4th with radiation to follow. This may sound weird, but I was a little sad when chemo ended. This had become familiar and I settled in to that routine ok. But once it was over, I had new stresses to think about with surgery and radiation. I've never been put to sleep, only the twilight during chemo port placement and previous upper GI. I'm 58 and have all my body parts LOL.
Going to spend the next few days skimming through these posts and soaking up as much information about radiation as I can. Thank you to all who are sharing your journey and information you've learned. Hugs to all!
3 -
Hi @grammie2! Congratulations on completing chemo. I understand how the transition from one leg of treatment brings on some anxiety and uncertainty as you leave a familiar routine and enter something new. I hope you find comfort and care in the next phases that help you move through them smoothly, too. Big hug to you!
1 -
I just completed Day 5 of Radiation Therapy and have 16 more treatments. I am beginning to get super scared - very afraid of the burn since I am very fair skinned. I have been using CeraVu and Aquaphor (sp??). I can already feel the spots that I have missed moisturizing - they are already sore. I have to get through the next 16 treatments and I am scared.
3 -
I had my first consultation with Radiation Oncologist and was given two choices for treatment. I decided to get the SAVI catheter 5 day internal radiation therapy. Since my surgery was on August 7 hopefully my breast surgeon can get me in next week to place the catheter. Apparently this treatment needs to start before the breast tissue becomes too healed. Once the catheter is in place I will have 2 treatments a day for 5 days at the location where the DCIS was removed.
The alternative would be 4 weeks of radiation treatment 5 days a week to the entire breast.
Since my DCIS was 3 cm below the nipple at 6 o’clock, I am reluctant to radiate my whole breast. When I can have targeted radiation on my lower breast tissue. Which will have less side effects of redness. This will allow me to get back to a more normal work/ life balance.
I feel lucky to have two options available. Fingers crossed insurance will cover SAVI catheter as it is apparently new treatment for DCIS.
2 -
Hello everyone, I am posting here in hopes someone may have had a similar situation and had to make this decision. I saw my RO last week and was given the option to include my lymph node area that was removed during surgery, within the radiation beam they will map out, and they will just move the beam up to that area. (3 lymph nodes removed, chemo took care of the cancer) Now I don't have to have it done, because the lymph nodes removed did not have any cancer in them and my surgeon suggested not to have them radiated because of the increased risk of lymphedema. The research only goes out to 5 years of recurrence data not being treated with radiation.
1 -
@ginger_stevens I'm so sorry it's off to a rough start. I know how overwhelming that fear can be. I've been very worried about the sunburns (also fair skinned) but it has been milder than I expected so far. My RO's practice suggested Aquaphor too, and I'm using that every night — and during the day they suggested moisturizing 2-3 times using a lotion containing calendula. I'm using Miaderm (which is formulated for people undergoing radiation therapy), but there are also lotions that have up to 10% calendula that you can get from naturopaths. If things get worse from a discomfort standpoint, your RO can prescribe you silver sulfadiazene cream (if you're not allergic to sulfa drugs) and that really helps with the burning (not sure about whether it helps with the discoloration). I just started using it on Friday (day 12) and I feel like it has been helpful. Also I am changing bra styles (and/or going braless) 2-3 times/day because the bra band area was especially irritated.
I hope the coming weeks go as smoothly as possible for you. My son got me a "radvent" calendar to count down the days of my treatment (it's a repurposed advent calendar) and I am just trying to focus on watching those days go by.
2 -
I had hoped to be starting a week of internal radiation next week, but my cavity has healed so well the SAVI catheter could not be placed by my breast surgeon. I am going back to radiation oncologist next week for all the preparations to start external radiation.
I also met with my medical oncologist and was surprised to learn that I could take a low dose of Tamoxifen for 3 years instead of an aromatase inhibitor for 5 years. She shared with me the TAM-01 study results showing it is effective treatment for post-menopausal women. I have a few months to think about hormonal therapy options, but leaning towards Tamoxifen.
I also bought Miaderm cream and the Miaderm soap. Thanks @ttatahealth for recommending. I will start using 3-4 times a day a week before starting radiation per package insert recommendation. I’ll need to buy another cream since it appears to only last 2-3 weeks. It is expensive but not being in pain will be worth the costs.
0 -
Hello fellow and soon-to-be human glow sticks! I had a lumpectomy in April, chemo all summer, and just finished day two of radiation. I’m so glad I found this thread because my RO didn’t mention a damn thing about the benefits of using moisturizer! She gave me a tub of a cream with 10% calendula in it, but made it sound like it wouldn’t help much so I just threw it in a drawer. I pulled it out after reading this thread and plan on using it several times a day and aquaphor at bedtime. I already feel like my skin is burning a little, so I hope this moisturizer helps keep it from getting super bad 🤞! Eighteen more zaps to go, then it’s on to hormone blockers 😮💨
Best of luck to everyone on this journey and I look forward to reading updates how each of you are doing ❤️
2 -
I am officially CT scanned and tattooed ready to start full left breast radiation in two weeks. I never thought I would have a tattoo and never dreamed it would be for breast radiation ☢️ I am going to be face down to hopefully have less risk of Rad to my heart ❤️ and lungs 🫁
I asked my RO about using creams, since he never mentioned either! and it is fine BUT not to apply 4 hours before radiation treatment. So glad I asked. He also sent in a script for a steroid cream just in case I need it for Rad dermatitis. Prayers to all of us in our upcoming treatments.
3 -
dmataraz1, I wish I had tattoos. I have what looks like sharpee plus signs with tape over them. They do not bother me but it has been so hot until today where I live that I feel like I have sweated some of them off. I am in the SouthEast and it has been super hot all Summer. Today, I got a new color of plus signs for the 'boost'. I now have blue (original) and green (got today) plus signs. I had no idea what the 'boost' is until I asked the technicians. I just completed day 12 out of 21. I am very red and keep applying creams. It is interesting to hear about other people's visits. I was never told not to use creams before radiation (even though I do they have probably worn off onto my clothes) and I never heard of laying face down. Has anyone experienced the 'boost'??? My incision is on the side . I was told the 'boost' occurs your last 5 sessions.
4 -
Hi everyone, I started my second week of 5 and decided to go with the extra area of lymph nodes, I think for my sanity in the long run.
What I am surprised about is that no one is talking about Mepitel. I opted for it and although it peels a bit it doesn't bother me. I am not feeling any burns or skin irritation. I will keep everyone posted here on the progress.
3 -
@ginger_stevens I am getting the boost treatment my last week of radiation. My incision is under my breast which has been awful until just this week. All bras hit me right on the incision. I live in Southwest and today was the first day below 💯. I bought some corn starch yesterday and have been putting under my breast with a makeup brush. What a relief to remove all the sticky sweat 😓.
2 -
Hey! I haven't met with my radiologist yet so what is Mepitel?
0 -
These will be my first tatoos as well LOL. I've been concerned I may not be able to do the breath holding. Doing it face down, do you still have to hold your breath? I haven't met with the radiologist yet, so don't know if mine will be full breast or target area, lymph nodes for sure but don't know the number of treatments either.
1 -
I’ve never heard of Mepitel either. My RO told me today I probably won’t have much burning on my skin from the radiation because of the new machines they now use. She said it used to be really bad for patients, but now they have technology that limits skin damage from the radiation. I guess I’ll find out soon enough if this is true! I’m three treatments in out of a total of twenty.
I also am getting one day of a boost treatment. My entire breast is radiated at each session and they have me lie on my back. I don’t have to hold my breath. It takes about thirty seconds for the machine to zap me on each side (it rotates while I’m laying on the table, so I don’t have to move at all). They put tattoos on me before my first treatment, but they are also using the markers and stickers on me, so I guess the tattoos weren’t in the correct places 🤦♀️. Whatever. I just wanna get this over with!!
1 -
hi everyone! I just completed my chemo a month ago and just had my ct simulation. Has anyone ever looked at the report from that? Do they go over what they see? Just curious.
0 -
ebfktzy I looked at my report. It didn't say anything about what they saw. Just the tx plan. I am doing 6 weeks/30 tx. I started last Wednesday. I was not prepared for how stressed out I would be about it. Each day is getting better, but yesterday, the machine was down, so no treatment. 4 down, 26 to go.
2 -
Hi everyone.
How is everyone doing with Rad treatment? I start next month. Any advice to start? I have the Miaderm and Aquaphor waiting.
Dx 4/2024 / Lumpectomy 5/2024 / Chemo T/C 7-9/2024: IDC ER/PR + / HER2 -
0
