April 2018- Starting Radiation

rgoossen

Good morning, had my first 1/33 radiation treatments this morning...met my RO afterwards, everything is looking good, RN gave me jar of Aquaphor to use.

kaywrite

I'm in the March group, too. #8/21 treatments today. Like metoo, I have not had any side effects yet. I am colorfully marked and taped from navel to collarbone like a sadistic 5 year old was set loose on my chest with magic markers. I had a soccer field-shaped loop added last week, and am told I'm in for more drawings when the final 6 boosts are going to begin. Yeah.

I have to hold my breath - it does not bother me.

The "radiation machine" (lacking the proper name) reminds me of the Starship Enterprise. When the big round part swivels around it can make me dizzy. So I close my eyes, hold my breath when they tell me to. It's all over in 10 minutes.

I bought Calendula ointment and Aquaphor. I am using Aquaphor at night before bed prophylactically.

As metoo says, lots of ups and downs. For no good reason I had a terrible time coping last week. I'm better now, but I had to remind myself that a breast cancer diagnosis is a roller coaster of emotion added to our already-complex lives, with a dose of incomprehensible hospital/HR/job/lab bungles mixed in for good measure. Be good to you, be your own best advocate, ask as many questions as you have to ask.

Rooting for you all!

Dodgerick

Thanks for responding, it's good to be able to talk with others in the same "boat"! Good luck on the radiation!

Dodgerick

Thanks for responding, it's good to be able to talk with others in the same "boat"! Good luck on the radiation!

Dodgerick

LiMa66, I'm so grateful to be able to connect with someone in a similar situation. I will hopefully get a fill today when I see my PS this afternoon. I worry about having to put my radiation treatments off (waiting for healing and to have these expanders fully inflated) since I didn't have chemo and they haven't even started me on Tamoxifen either.

HopefulAC, I sure hope they don't think they need to deflate me...it's taken so long to even get my first fill!

Thanks for responding everyone, it's good to be able to talk with others in the same "boat"! Good luck on the radiation everyone! I'll be joining you in radiation soon!

LiMa66

Well, April is here already. Those who have started already, I hope all is going ok. Those of us who start soon, good luck!

AgathaNYC

Yes - April is here! I'm going in for my simulation on Thursday.

My RO told me to prepare for radiation by starting right away (before radiation starts) to moisturize twice a day. They didn't recommended any specific moisturizer brands, but did mention that calendula and aloe vera were good and they only things they asked me to avoid were lanolin and alcohol.

I came across THIS 3-step natural regimen in a couple of places and decided to follow it. Maybe it will appeal to some of you.

Apply the following to the entire area that will be irradiated (in my case the RO's nurse told me to make sure to moisturize the whole breast, up and over the shoulder and around the side). Do this twice a day.

1. Calendula oil: soak a cotton ball with it and apply. It will be absorbed quickly. The oil has a yellow-orange color (it's made from marigolds) but it hasn't stained anything.
2. Aloe Vera gel: allow it to sink in
3. Lavender Essential oil in Pure Coconut Oil: one or two drops of the lavender oil in one tsp. of coconut oil

Teacup7

Hello,

I'm new here. I hope it's okay to join in. I had my first rad treatment today. It went fine. Only 32 more to go. Anyone know if fair skinned people have more problems with radiation burns? I already feel like I have a slight sunburn.

metoo2018

teacup7 - I read that there is no difference if you are fair skinned. Seems like there would be - since we are more likely to sunburn - but apparently not. I am 5/30 treatments in (just found out I have 30 and not 20 like I thought ). I am very fair skinned and don't see any change yet - sometimes I think I see a little pinkness but I think it is because I am looking for it. Some have said the pinkness can even come and go throughout the day. So I will watch as I go through week number 2 and see if there is a change.

Best thing you can do is lotion up!

AgathaNYC

HI, Teacup. Welcome to the April group! Good luck as you start off in your treatments.

My radiation oncologist (RO) told me that skin that has had a lot of previous sun exposure or has sun damage is often more susceptible to skin damage from radiation. Often we fair girls burn more easily in the sun so may bring a history of sun damage to our radiation experience. That might be a better predictor of how our skin will react to radiation.

ctmbsikia

Looking for any input on radiation effectiveness time line after surgery.  My appt. for simulation after the 1st plan failed has just been pushed back another week to the 17th , that is 11 weeks post op-----if this plan works.  At this rate I may have to join the May group!!!  

Curious to know if there's a window of opportunity closing on me?

Teacup7

AgathaNYC, that makes perfect sense. I spent many summer days of my youth trying to tan my pale skin. My décolletage area feels sunburned after the radiation. It probably has lots of sun damage.

Teacup7

Hi metoo2018, I've been slathering on shea butter, aloe, Eucerine and Aquaphor. I hope it works. The doctor said this is some kind of new radiation. They had to go round and round with the insurance company to get it approved. Funny thing is, my skin isn't the slightest pink, but I feel sunburned.

Bbccats

I had my planning today and it was pretty easy. Just had to lay completely still for about 15 minutes total. I got four tiny tattoos. They gave me appointments for my first week. I start on April 17th and finish on May 22nd (25 treatments). Looking forward to counting them down.

poliwogli

I had my simulation and got my 5 tats yesterday. The one in the side of my boob hurt, big time. The others weren't bad. I'm probably sensitive in that area.

I will have 5 accelerated partial breast treatments every other day, starting April 17th. The RO said that everything looks good in my scan for the accelerated partial breast treatment, as the tumor site is far forward from my chest, which is one of the criteria.

I decided not to take part in the study, which I'm a little sorry about since they are trying to find new treatment methods that make this easier for women. The trial selects participants randomly for either 3x or 5x. Both methods deliver the same amount of radiation, and I'm concerned about the higher dose during the 3x. I have a skin condition in the area which is unrelated to breast cancer, and worry that it will become worse. They seemed a little unhappy that I opted out, but said it's really up to me. They have been offering the partial breast 5 treatments to women with small, low risk tumors for many years now, so I feel more comfortable with it.

With this method, they are finding that women don't show redness or burning during the treatment, but it might show up a few weeks later. They gave me Calendula cream to use twice a day. I was told I can lap swim (I'm a longtime swimmer), even on days when I have a treatment. We shall see!

It does seem really incredible that 3 or 5 radiation treatments would do it, but they said that they have found it equivalent to the longer 3 week method that is becoming more standard.

LiMa66

Had my planning appt today also. Several cool red X's covered by Tegaderm. Will get the tattoos next appt. Also have an interesting wire/tape thing over the mastectomy incision. It went quickly and the techs were very friendly and made sure I was comfortable.

Back to waiting but at least there is a plan now. Ready to get going already. Practicing patience.

Cfarnell

My diagnosis was DCIS and I had lumpectomy.Today was my 4th radiation treatment. I'm on board for six weeks. No adverse physical affects so far but it's emotionally taxing. Yoga helps

kaywrite

Helpful hint: For those of you thinking about how to replace underwire bras during the radiation process, one of our March radiation ladies suggested removing the underwire from an existing bra. I did that today for the first time and it works like a charm for me. I snipped the cloth at the armpit end of where the wire ends and slid it out. I can easily reinsert it and stitch it closed at a later time. Thanks, Nancy, if you're reading this!!!

Hello cfarnell! So glad I got to see you in the waiting room yesterday - I needed those laughs!

LiMa66 - Waiting to start treatment was torture. Patience is the key, as you say.

metoo - 20 to 30

AgathaNYC

Going in for my simulation in the morning. I'm excited to get this last step in my treatment underway. Let's get this show on the road!

marleigh

Bbccats and LiMa66 - I see you had your simulation yesterday. Know you're glad to have that final step before treatment begins. I was just so ready for the actual radiation treatments to begin. My RO made me wait 5 wks post-chemo before he would begin because he wanted all  of the Taxol out of my system. I thought the 5wks would never pass. 

AgathaNYC - good luck tomorrow with your simulation!

I have completed 5 treatments. Everything is still fine, no SEs yet. 

Today I did a count in my head each time the beam was on. I counted to 20 on each. I don't believe it was an actual 20-second count (I was too fast I believe) so I would say the beams go for about 15 seconds each, maybe even less. So it's 45 seconds max total (3 angles) in treatment time for me. 

Cfarnell

Great tip on the bras kaywrite! Glad to see you there as well.

I’m now 5 treatments in. Some burn is starting to happen on underarm near back. No pain. Greasing up with the Aquaphor.

Saw rad doc today also. She said to keep exercising and stay hydrated to avoid fatigue. I’ve been catching the yoga classes at ymca and it’s helped with coping for sure.

A shout out to Marie Curie for devoting her life to the study of radiation! Benefitting from her research with this therapy

Hang in there everyone! Stay positive.

kaywrite

Ladies heading in to rads - the American Society for Radiation Oncology released updated standards last month. The takeaways for me were: units of radiation are measured by "grays," and that the usual dosage was 2 grays per treatment; for some breast cancers the "grays" can be increased in order to accelerate the process and decrease the number of sessions. For example, I am receiving 2.66 grays per whole breast treatment, then 2.24 grays for the 5 boosts that come after whole breast. This decreases the number of sessions to 21 total.

This is called a hyporfractionated schedule. Here is the article:

http://www.breastcancer.org/research-news/accelerated-whole-breast-radiation-new-standard

poliwogli

AgathaNYC, how did your simulation go yesterday?

Cfarnell

Agatha NYC , how was your simulation? When I had the first guides drawn on with sharpie that was a bit shocking. I didn’t expect it to be so expansive. Then i had to wait another week for the first treatment. Ugh. Now that I’m 6 out of 33 treatments in I feel somewhat relieved.


Embarking on some outside reading this week- Illness as Metaphor by Susan Sontag ( revisiting this one) and Emperor of All Maladies by Siddhartha Mukherjee. Reading helps me make some sense of all of this.

rgoossen

Hello, completed 5/33 treatments this morning, no SE'S as of yet. Looking forward to having the weekend off. How is everyone's radiation treatments going?

ctmbsikia

I don't think I've ever felt this stressed out.  Not even as close to when I first felt that lump-(probably because I knew what it was).  I have been relatively calm through everything until this week, and I'm just over the top and am struggling to calm down- I'm almost there.

On Mar-31 I got re-mapped for the prone position as RO scraped 1st plan doing the breath hold method on my back.  I was fine with this.  Actually, it was me, the patient, that suggested changing positions.. Strike 1

I am then told that they will send new plan out with a rush on it.  Right. Get a phone call Tues, that plan won't be ready and pushed my Apr-11 appt. to Apr-17...Strike 2

Today, I get another call from a nurse this time saying my daughter had called and asked a few questions and she says they can see me on Apr-10 as my plan is ready.   Was this magic?......Strike 3

My confidence in this crew is now shot. Public relations wise at least, and I get the sense the whole dept. maybe overworked.

AgathaNYC

Hi, everyone. Hope you've had a good week.

ctmbsikia - I'm sorry that you've been so spun around by your radiology team. I hope that once you are set with a new plan it will run like clockwork.

Yes, I had my simulation. I'll describe the process in case anyone who hasn't done it yet is curious. Of course all radiology centers are different, but you'll get the gist.

My appointment was for 11am but they asked me to arrive at 10:30. After a few minutes a radiology therapist came out for me. She brought me back to the women's changing rooms and gave me a key to a locker. I had to undress from the waist up and put on a robe (I kept on my glasses and cap.) The locker was pretty small - it wasn't easy to stuff in my big winter down coat, bag, clothes, etc.

From the changing room I went into the women's waiting area (men have their own room next door.) My rad therapist came to get me again and took me into the room where they did the simulation. I took off my glasses, robe and cap and left them on a chair in the corner with my locker key. I'm doing 16 rads face down, and then the 4 boost on my back so they had to set up the machine for both scenarios. It looked like a PET scan machine (donut, not tube).

Prone position was first. There was a step-stool to help me get up on the table, thank goodness. My right breast is being treated so there was an opening in the middle of the table (between shoulder and rib area) on that side, and a thick foam pad on the left side. I had to position myself so my right breast hung down in the opening. I had been expecting there to be one of those oval padded wholes for my face, but I just turned my head to the left, cheek on the table. The two therapists tweaked my position a bit, moved the table halves a bit, so my breast was centered correctly. At that point my RO and her resident fellow came in to check. It was kinda funny to speak to them that way since they looked upside-down as they stooped down to check my breast position. The RO's signed off on my position and left. At that point the therapists drew an outline on the foam pad under my left side of my arm and shoulder position. The weight of my body created the "mold" in the foam. (I had been under the impression they had to make some sort of more complicated mold than that.)

Now it was time for laser light show. I closed my eyes so I couldn't really see what they were doing, but felt them putting marks on my breast and sides with a marker. After that I was put through the machine a few times for an actual CT scan. Only toward the end of this did I start to feel discomfort where my ribs pressed into the edge of the table opening. Luckily pretty soon after that it was time to sit up and get ready for the supine simulation. I have low blood pressure so I got a little light-headed getting up from that face down position. Take it slow, ladies.

They had to ready the table for the new position so I had a second to recover. Then back up on the table on my back, which was much easier. The process was repeated but this time I almost fell asleep.

Last part of the process was the tattooing. I got two little dots between my breasts, and two on my side. It definitely smarted, but just for maybe 2 seconds per dot. No lasting pain.

After that they cleaned me up from the markings and sent me on my way. On the way out I stopped at the front desk to get my treatment schedule. I was so happy to have it all over with that I breezed out of the building with the locker key still in my bag. Didn't notice until I was half a block away ;-P

I start for real on the 18th.

Mucki1991

Ladies I just finished yesterday and this is what my mastectomy skin looked like after 5 weeks standard treatment and 1 boost week. (my boost was in another area.) The burn will continue to get worse for a few days even after treatment stops. Be diligent with moisturizing I used miaderm and aquaphor. Also you want to consider Haynes men's t shirts for comfort and the messy creams. I wear mine inside out because even the seams hurt right now. If you have a lumpectomy it may be a little easier as you still have breast tissue and my skin is very thin from surgery. Sidenote I had my implants done prior to treatment so I'm not sure how much worse it would have been with tissue expanders.

Best wishes for you ladies.

Laxmom2006

Agatha- I had the same procedure at Sloan in Westchester. I start on Monday for the dry run

LiMa66

Finally got my schedule. I start Monday, the 9th. I was so anxious to get started but I must admit to being a bit nervous now. I know it's necessary. I know it's the right thing to do. But dang. Sometimes i still can't believe this is all happening to me. As a nurse, I've had cancer patients. Now I'm the patient. Surreal, and real.

Anyhoo- hope all is well so far for those who have started. Prayers & positive vibes going out for all of us. Have a great weekend.