Starting Radiation May 2018

star2017

I haven't seen a May thread yet — apologies if I missed it!

Anyone else starting radiation this month? I'll be starting in a couple weeks, but I go in next week for the detailed planning meeting. I'm getting scared because there are so many unknowns.

timetobebrave70

I just went for my post op bilateral mastectomy pathology report. My doc says my margins are clear and lymph nodes aeee all negative so why do I still need radiation? I have to get chemo because I am HER2 posi

star2017

did your doc say you definitely need radiation?

JosieO

Hi Star2017,

I’m actually starting my first treatment tomorrow 5/4/18. I was waiting for someone else to join me, so in the interim I read all of the March and April posts, and learned a lot.

I would suggest you also review them, and you’ll see some common theme which can help you shape your own questions, such as:

—how many total treatments

—will you also receive boosts to the area where the tumor was removed

—will you receive them lying on your back, or on your stomach

—what creams, gels, lotions, oils do they recommend you use

—will they use tattoos to mark you, or stickers

—any special needs you might have that you need an accommodation for

—how often will you see the Radiation Oncologist (usually it’s weekly)

When I went to my simulation the Radiation Oncologist was very thorough and shared almost all of the details upfront, so I didn’t have to ask too many questions. I also felt like he is approachable and concerned about me, so meeting weekly i’ll get help with issues if/when they occur.

Good luck and best wishes. I’ll be here with you.

star2017

Thanks, Josie. I wish you all the best for tomorrow!

I'll have 6 weeks of treatments (30 total). The final week will be focused on my the scar/tumor area, I believe. I had a prophylactic mastectomy a couple weeks ago and am a little worried I won't be able to position myself correctly, but hopefully I'll be okay. The oncologists didn't want me to delay treatment further. I'm not filling the TE on my prophylactic side until after rad (well, we may do a small amount). I have an implant already on the radiation side and need to ask the PS about what I should expect.

JosieO

Star2017,

You already have the basic treatment protocol with the 30 treatments plus the boost. Since you have TE/implants to consider, that would be an area to ask a lot of questions, as well as scan other group posts to see how others with similar managed.

During the simulation the techs and the oncologist will take a lot of time with positioning, but be sure to let them know if at any time you feel uncomfortable or hurt. Many women do utilize pain medication if needed. Once you get “marked” the actual sessions are supposed to be much easier. I’ll let you know..

I had a lumpectomy, left side, but with one cancerous lymph node, so was advised that I would get radiation to the whole breast, boost of the tumor site, and the collarbone area. Still had not heard the total number of treatments-expect to get the final count and schedule tomorrow. Will get my radiation lying on my back, primarily due to the lymph node involvement. Many more women do the prone position (stomach), which is slightly more protective of heart and lung involvement.

Best wishes on your simulation. We’ll encourage each other, and those that join us.

DearLife

Hi Everyone

Thanks Star for starting a May group. I am sorry you are having to go through this at such a young age and I wish you well.

I had my first treatment today. I wasn’t physically uncomfortable but felt like I was in a space capsule with ground control communicating through the speakers lol. The techs are in the room to set you up, then they leave while the machine is operating. I am scheduled for 16 sessions.

My treatment is on the left so I had to hold my breath to separate my heart. In the simulation session, the radiotherapist told me to think of a favourite vacation place but that didn’t work for me - too many options. So I used a yoga technique and thought about my lower back touching the table as I held my breath. I found this was easier to concentrate on.

So far so good. I am using water based Aveena lotion 3-4 times a day.

I asked lots of questions at the planning session and before we started today. This helped relieve my concerns. I think tomorrow will be easier since I know what to expect.

Good luck tomorrow Josie!

fishingal68

Hi, ladies! I start radiation on Monday. I was chosen to participate in a clinical trial, so I am the lucky recipient of at least 25 sessions. (Do you hear the sarcasm?! LOL!) I went in for my mock-up last week, and apparently there was a problem with that, so I was summoned to return this week. Aah, the frustrations of dealing with scheduling all of this.

I'm not so much worried about the radiation as I am about the side effects & if it damages my implant. I am also concerned that it will damage my muscles on the right side. Since I am right-handed, I cannot imagine NOT being able to have the same range of motion as I have now.

I had hoped to have my treatments after work, but we couldn't get that arranged, so I will go in at 7:45 am every morning. I teach high school and only have a couple of weeks before school is out for summer so hopefully I won't have issues with it.

Good luck to you all!

Puzzlewoman

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Hello all, I met with my rad onc last month and I have my first appt on May 22. They told me I would have the mapping and cat scan done and then they would schedule my 4 weeks of radiation treatments. So I would guess mine will start about May 29. He also said i would meet with him weekly on tuesdays to see how it's going

ChelseaSculler

The RO's office is currently tracking me down to schedule my mock-up--to the degree that they called my emergency contact! <eye roll> A girl ignores a phone call for 18 hours and you go to the emergency contact?

Anyway, I met with the RO last week and should be doing the mockup in about a week and starting actual treatments (20--3 weeks plus boost) the following week. I did not get the sort of answers to my questions I wanted, so I'm still a bit cranky about this whole thing and want to hold off until I meet my MO. And the RO is really resisting my not doing tattoos. Which I feel strongly about as well, so we were off to a great start.

No recommendations from her office regarding moisturizing or anything yet, maybe at the mockup?

Simbobby

Thank you for starting this thread Star.

I am scheduled for my simulation on May 14. At that time, my RO will tell me if I get 30 or 33 treatments.

They can't start radiation until my tissue expanders are filled, which will wrap up next week.

At my initial meeting they gave me samples of Miaderm and CeraVe lotions. Though they said they can't recommend Miaderm, all of their patients that use it have been thrilled. They also told me to get CLEAR aloe Vera gel for soothing.

Sorry for the circumstances but glad we're here together

JosieO

a few comments:

- did not start my radiation today as expected. For some reason a decision was made that I now don’t have to hold my breath during treatments (was glad about that), but I had to have another chest x-ray. So now Monday is my official start day.

- was also advised to use 99% aloe Vera gel. Also read on these posts that it should be stored in the refrigerator to help with cooling. A dermatologist (with beautiful skin) had always recommended CeraVe, so I had thought to try that as well. We’ll see...

- Glad we are all here together

Georgia1

Hi everyone. I just wanted to share the instructions I got from Johns Hopkins, since no one else seems to write them down.

Wishing you all the best!

JosieO

many thanks for posting this list, Georgia

star2017

Yes! Thank you, Georgia!

star2017

Josie, I wonder why you don't need to hold your breath! Are they able to angle it so the lungs are not in the way? Did you have a BMX?

Okkate75

Hi, Georgia! I'm a week out from finishing rads at Hopkins. Everyone had been great. Good luck! (I've got the 815am slot--say hi if you are there in the mornings!)

star2017

congrats, okkate

sswp

I'll be starting radiation on May 8th. I attended the education class yesterday and my cancer center recommends glaxal base.

MimosaGirl

Hello everyone!

I started my radiation last Wed (5/2). I will have total of 22 (last 5 would be the boost). I've been using Miaderm cream that my RO recommended to use. It is little pricey but I like the scent of the Miaderm compare to other Calendula cream, but not sure if it makes any difference... I have a very sensitive skin and paranoid about the SE. I had allergic reaction to Arimidex after taking 10days. It was really bad rash all over my upper body. My MO suggested to stop taking the hormone meds until I finish radiation. So I've been applying Miaderm cream followed by Aquaphor religiously. My RO didn't mention anything about any oils, but anyone using oils?

Good luck to everyone!

JosieO

Star,

I honestly don’t know-the techs told me this with a smile, but didn’t elaborate. One of the questions for my radiologist when I see him this week. I know they have spent a lot of time on beam angling

No, I had a lumpectomy on the left side, tumor on the top of the breast (12-1 o’clock position), which as I was waiting for surgery had moved to be close under the skin (was not palpable when originally diagnosed, found with an ultrasound). I was anxious with my initial diagnosis, but have an outstanding surgeon, radiologist and oncologist. I think the world of all of them-intelligent and caring.

JosieO

Welcome MimosaGirl,

Good information on Miaderm cream-have read other favorable comments, will ask about it. Starting my treatment on Monday 5/7, was told to start with 99% pure aloe vera gel, also could use Aquaphor. Radiologist said he would watch my skin closely, add other products depending on reaction/need.

I had asked my oncologist if I would start an AI at the same time as radiation. He said no, something to the effect that “they compete with each other”, so none for meuntil radiation is finished. We did discuss and he is going to start me on Arimidex, said he switches between all three depending on side effects.

Continued best wishes!

JosieO

MimosaGirl,

There is a post on this site with comments on using oils. Hopefully I have copied it correctly for you here:

https://community.breastcancer.org/forum/70/topics/722794

Dodgerick

Hello to all the May Radiation Group!

I actually started my radiation on April 25, but thought I'd get in on the May Radiation group since I'll be having radiation treatments for the month of May. Only 8 treatments so far and just a little discomfort, mostly tired the last few days (I never take naps...but I have the last 3 days).

This momma is really worried right now because our daughter went for a mammogram recently and the results showed 3 spots. She's had 3D imaging since and a sonogram. They think it's benign, but because of my recent diagnosis and treatments, they did biopsies. Praying for good tests results!

star2017

best wishes for your daughter, dodgerick! I saw my mother deal with and move forward from two cancers. She’ll gain a lot of strength after seeing you move forward with each step, even if the news isn’t great. Hoping for the best

TheSwedishOne

Hello everyone!

Finally I can post. I've been Reading the March and April threads waiting patiently (or not so ) for the May thread to appear. Felt too shy to start it myself, so thank you, star2017!

I saw my RO last week for an assessment and information. I had the first CT, got tattooed and marked with a Sharpie. I was pleasantly surprised by the few markings considering what I've read here on the forum. But then again, I'm only getting radiation in my right breast.

Monday is my first treatment. I'll have 15 in total.

The treatments will take place in the town next over and I can drive there in 20 minutes or use train and bus for less than an hour's commute. I'll be on part-time sick-leave during the three weeks of treatment and the week after. Hopefully I'll get appointments in the afternoon so I can get my 4 hours of work done before heading out.

Looking forward to getting to you here!

-Anna

JosieO

Welcome, TheSwedishOne! (You remind me of one of my longtime friends-uses “The Swede” as a username).

I did same, and learned a lot, but since we will be “real time” with our treatments, it will be even more helpful.

Sounds like you have a well-thought-out plan.Hopefully they will have open slots in the afternoon.

Just had my second treatment today. Feeling pretty good so far

star2017

Hi everyone,

I had my simulation today, got positioning set, mastered the breathing, and got three little dot tattoos (no fun, but not terrible). I go back in next week for the dry run.

Josie, glad all is going well.

The SwedishOne, I'm also being treated on the right. Best wishes for next week!

Dodgerick

Thank you for your kind words star2017, hoping for the best for you too!

Pumpkin68

Myradiation starts tomorrow! All marked and ready (I guess). My margins are still not clear after 2 lumpectomies but they are confident they will get the last of it with 5 weeks of aggressive radiation with a boost at the end. And to top it off because I'm estrogen positive I have to go off the pill so all hormones are off track! Thankful for early detection though!!!Could be worse I say.. good luck, Ladies of May!!!

Char105

Looks like I'll be joining the May radiation. Went for my consult today and straight to simulation for the markings and tape and no tattoos. She wants to start this next week sometime. I'll be having 20 total, 16 whole and 4 boosts. She told me to use Miaderm which looks like only Amazon carries it and Aquaphor at bedtime. She said to wear a t-shirt at night under what you normally wear at bedtime. Hope this all works out since I am going back to work on Wednesday. She did say the first couple weeks aren't bad then you will get tired on weeks 3-4 and 5 even though you won't have treatments on the 5th week.