MARCH 2018 starting RADIATION

Veeder14

I hope it's not too early to start this. I'm back from my consult with the Radiation Oncologist today. I have the simulation this Thursday, and will be doing face down treatments. I'm glad about face down since it will take my heart and almost all of my lungs out of the beam. I do have major spine and neck problems of which laying prone is the absolutely worst position for me. The doctor agreed to give me Toradol injections so my back can hopefully make it through this. I think the simulation app't will the longest amount of time I'll be prone.

I'll be scheduled for 16 treatments and 5 boosts, starting either March 7th or 12th. The schedule will be finalized this Thursday. I tried to talk the doctor into doing the boosts during the last week of regular treatments, since I live about 2 hours away from the hospital, but he won't agree to that. I go to a major teaching university hospital since I don't believe our small town hospital is competent. So now I'm working on temporary housing for the 4 weeks and I day time probably at a local hotel. Not the best option but at least I'll be able to walk over to the cancer center. Wish I didn't have to do this at all, UGH.

Paco

I have my rads consult on March 6 and will start the following week.

It must be hard to stay away from home all that time. Will you have any company during that time, friend or family?

Veeder14

Hi Paco,

I guess we'll stick together along with anyone else who joins us here. Good luck with your consult. My husband is going with me although some days he might go back home for a few nights and take care of things there. We also help take care of my parents who live even further so he may go there also.

kaywrite

I have my RO consultation on Friday, 3/2. Glad someone started this thread! Hello everyone!

Veeder14

Your welcome. I've got my simulation in the morning and I'm nervous. I guess I'll have to take some muscle relaxants since this will probably be longer than when treatments start. Worried about my back/neck and pain. When treatments start the doctor said they would give me long acting antiinflammatory.

kaywrite

Veeder - you're way ahead of me - consultation tomorrow. I should probably read the January and Feb threads to catch up on what to expect! But yes - calm is a good goal, harder and harder to achieve when dealing with health care providers and cancer. But it remains my chief goal Good luck to you, deep breaths.

Paco

Veeder14 I remember you were doing prone radiation. Let us know how that goes! I'd like to know if that's an option for me but I have super small breasts (like barely A cup) so I have a feeling there isn't enough there. And also, my DCIS was close to the chest wall.

Best of luck today and kaywrite good luck on your consult of Friday. Mine is Tuesday

Veeder14

Hi Paco,

I'm back from the simulation and it went ok, glad that's over with. First they marked the area between the breasts with these sticky wires and below the breast and on the outside edge, sort of making a box shape. Then went in the CT scanner prone, then had tattoos on my back, and one along rib cage below underarm. It didn't hurt. The prone position wasn't too bad but the surface is very hard and I took half a muscle relaxant to make sure I could do it. The radiation doctor also had me go into the CT scanner on my back and hold my breath. He evaluated both positions and said prone would be best. Being on my back with my arms up and laying on that hard surface was worse than prone.

However, he mentioned that my heart is located anterior, so I guess that means it's close to where they plan to radiate because they need to get near the chest wall. Not to excited about that. Then I asked to see the machine for the radiation and they let me in in between patients.After it's all mapped, I will get copy of it. So I start next Thursday, March 8th.

DoubleBloom

Hello Everyone,

I had my simulation verification today and am cleared to begin the first of 28 treatments on Monday the 5th. Everyone says that after chemo and surgery this is the easy part! It may be easy physically but I find myself more emotional than ever.

The nurses have advised me to use Calendula cream or pure aloe vera ointment two to three times a day to nourish the skin. They also reminded me to drink lots of water and eat plenty of proteins to help fight fatigue. I hear that fatigue can set in after about two weeks but not everyone experiences it. My RO says it can last for up to two months after radiation ends. Luckily it's not supposed to be as bad as fatigue with chemo, just more of wanting to take a nap.

I look forward to sharing this experience with all of you.

Billb464

hi, I started radiation today, I have been posting on the February rads, since I had my simulation a week ago. I have 25 treatments and hope it is smooth sailing. I used the calendula lotion today after and tonight b4 bed.

Good luck everyone!

Veeder14

Is the calendula cream a prescription? Good luck everyone with their treatments.

Dlpaquette

I just got a call today, my simulation is March 15th, I then will go back to start treatment on March 21st if I am healed from my BMX. I will be having my incisions surgically closed on Tuesday with hopes to speed up the healing. I was lucky that the 4:15 time slot was open so I can go into work early and get 8 hours in before leaving for radiation. I usually work 50 hours a week so 40 hour weeks will be a welcome change.

Dawn

Veeder14

Hi Dlpaguette,

Good luck on your upcoming incision surgery. Glad you got the time slot you wanted for radiation. Working 50 hours per week ~I remember when I used to do that, it was exhausting.

The only thing that bothered me about my simulation this morning was back and neck pain, otherwise the tattoos didn't hurt and the CT scan was easy.

Billb464

the calandula is not a prescription, I got a lotion and a salve off amazon

petey111

Hi everyone!

Just ended chemo early this week and had my consult with the RO yesterday. (It was long and interesting.) I am scheduled to have my set up on the 15th and start rads on the 19th.

The meeting with RO yesterday was interesting. He is an interesting duck. But he really knows his research. The only thing he was a little torn on was if he should do rads to my Super Clavicle area. He was leaning towards no, as was his son who is also a radiology oncologist. The risk of side effects for that are greater than the rewards he thinks. Especially since I only had 1 of 4 nodes with micrometastasis. The reoccurrence rate for that area is only between 3-6% to begin with. Doing rads there might bring it down to 1.5%. So they both were leaning towards not doing it. He was really laid back towards lots of other things - like deodorant saying that wearing aluminum or zinc deodorant causing problems with rads is just "oncolore" and is a myth. He said I wouldn't need deep breath holds the radiation that would hit my heart - if it did - would be so low it wouldn't be a concern. He said he could show me the mapping and numbers of it to reassure me. He also said there is a new study from Harvard saying that many of the things they tell you to avoid for lymphedema don't actually affect it. But like I said, he backs it all up with research. And solid research too, studies where the participant numbers are huge and the results have clear links. I also now know the entire history of his family - where & how he and his wife met, where his son & wife met, his other son is a bachelor...etc. etc. And he went through the history of the treatment of breast cancer leading up to why lumpectomy is better for certain groups of women, and a lesson on the physics of radiation. We talked about my actual rads for maybe 30 min. of the two hour meeting. It was a little bizarre.

I don't know if I'd have time to get a second opinion, but maybe I should...I don't know. I am supposed to have my set up appointment on the 15th and start on the 19th. That's not a lot of time to squeeze in another appointment. I suppose I can call though.

Here the questions running through my mind:

1. Should I do clavicle - I'm leaning towards no.

2. How big are the tattoos? They said I can choose tattoos or tape, but I heard the tape can tear your skin off.

3. Is it weird he is so laid back and not worried about things like heart, deodorant, etc.?

4. They said they would talk about creams, lotions, etc. when/if I started having side effects. But maybe they will discuss it more at the set up appointment. They said there are no real restrictions on anything except maybe avoid layering the breast with stuff before each rads session. Again - so laid back - is that weird?

What do you guys think?

kaywrite

Thank you, Paco. Some of you are way ahead of me, so I'm listening and gathering information for questions. My SO thinks I have a giant whiteboard at home with strings and tacks all over it, charting out my options and choices like Carrie on the first season of Homeland. I wonder what the RO will think? LOL So many questions.

Talk to youall soon.

rdeesides

As for the lotions, I was told the same thing by multiple doctors so I dont’t think it’s weird

Veeder14

Hi everyone,

I'm checking in for a short time as I'm real sick after yesterday's simulation. My stomach is very sensitive and I had to take muscle relaxants to be able to be prone and have my back and neck stretch enough to get it done. Plus, then I took some antiinflammatory pill when I got home for the pain. Way too much for my stomach, after 3 weeks of antibiotics.

Spoke with my primary care and I'm scheduled for a Toradol injection before my first treatment, that should help my neck/back pain. So hoping my stomach can handle that. I've had a lot of it since Dec. All those meds I had with the surgery added to everything else is too much. Plus I woke up in the middle of the night dizzy and pressure on head/neck and took meds for that. ugh.

About the tattoos, I was worried also but it's just like a dinky dot, 3 on my back and one near the side of my rib cage. I may not be back on here until tomorrow, it's hard to sit up. I was told they would talk to me about lotions at my first treatment.

Signing off.

Meg101

Hi Everyone. I just returned from my simulation this afternoon. it was a breeze. It only took about 20 minutes. I now have two tatoos and a few other marks. The tatoos are about the size of a pin head. The tech immediately wiped the tatoos with rubbing alcohol so the ink wouldn't leave much of a mark. I'll be laying on my back for the rads, but I won't have to hold my breath even though the cancer was on the left breast. Apparently new technology protects the heart and lungs.

At first I refused rads due to all the bad experiences I heard about from others who have been through it, and because the radiation facility was at least an hour from where I live. However, my doctor arranged for a facility closer to home, and as it turned out I felt a very good connection with my RO and the technicians. They explained every little thing they would be doing .... and why they would be doing it.

As far as lotions and creams, they said they would provide everything needed as the treatment progresses. I already have pure Aloe Vera Gel and Aquaphor as a backup if needed.

Next week I'll have a CT scan. After that I start treatment.

So here we are girls! Let's get this party started. I'm looking forward to hearing about how each of you are doing throughout your radiotherapy. All of your tips and tricks will be much appreciated.

Meg101

Petey, thanks for posting those stats regarding radiation therapy and node involvement. I have been following your progress since you started chemo (I lurk on the BCO site, but rarely post anything). I was so afraid of starting chemo. It helped to read about how others made it through that part of the journey. We will never know who we may help as we proceed through our treatments and share our experiences. Anyway, I'm glad to see you in the March 2018 rads group.

petey111

Awww Meg. Thank you. That makes me feel good. I hope you are going through things well!!

It also makes me feel better hearing from rdeesides and Veeder. It sounds like things aren't off at all with my RO. The superclavicular radiation is the only question, but I think it may not be worth it to do it - like the RO says. I'll be ready for my set up appt on the 15th then I guess! :-) I'll be checking in and hearing how things are going with all of you.

danderRN

Hi all. Good Luck to all. I have completed 14 out of 21. The last 5 will be boosts. March 13 I will be done. Like you I was a nervous wreck before I started. I am having treatments prone and for me no problem. It literally takes 10” with most of the time getting positioning correct. I have x-rays every 5 treatments and a weekly check with RO. On day 2 they did a check for radiation scatter. The simulation lasted about 1/2 hour. I have 3 tattoos on my back about the size of a pinhead. Fatigue not really an issue. Once or twice my eyes closed for about 10 minutes in the afternoon and somenights I go to sleep as early as 10. Usually its 11 for me. I exercise daily. I drink lots of water. No skin issues at this point. My nipple is a little bigger now and slightly darker then the other. On day 3-4 I noticed my breast seemed red and not itchy. Was told that was too early for radiation se’s. I was using aloe and miaderm at the time. I was told to stop and switch to coconut oil. I also wash the breast with calundula soap. The reddness was gone in 2 days. I was reacting to either the aloe or miaderm. I also shower right before my treatment to remove any residual lotions. I wear loose cotton t-shirts most of the day to prevent friction and i got cotton bras for when I go out. I got them at k mart for $5.99 apiece. Pink is the brand. They are comfortable and since they are so inexpensive I don’t mind if the coconut oil gets on them. I wear a loose zipper cotton hoodie to treatment with no bra on. I can just go treatment room and take my arm out of the sleeve. They drape it in my back. I found them on amazon. Regna x long sleeve lightweight. I got coral and blue. I wanted cheerful colors and I can use them after treatment ends. I was told your skin needs 2-3 weeks after treatment ends to heal and it is normal to see breast changes for up to a year or so post radiation. I get a reprieve for a month and then I have to decide if I want to go ahead with femara. It’s a journey we are all on. Hope this helps with yours

Veeder14

Thanks for the detailed description danderRN. Do you have to go to another location to get your xrays? What if they find scatter, then what happens? I'm glad your not having skin issues. Yeah, I'm nervous all right. How close does the machine come to your back. I was told it beams from one side, then moves over you, then beams from the other side. In pictures I saw online it looked like there were two beams going at once, but I guess not.

Meg101,

That explains why the technician was wiping alcohol over the tattoos. I thought it was because I was bleeding.

I bought soft cotton tube tops/bras from this company, fairly inexpensive and they make custom products. https://www.tubetopcompany.com/ In case this helps anyone.

danderRN

Hi veeder. I registered very little scatter outside target area. I did not ask what happens if there is. As for the x rays they are done on the table once you are positioned before the radiation. Then they proceed with the radiation. It just adds a couple of minutes to the treatment. The first week i kept my eyes closed and listened to the music and tried to relax. They irradiated my left side first and then the machine does go over your back to the other side. It feels warm. By week 2 I did open my eyes and saw how close it was. Maybe 6 inches. Each side is about 30 seconds. I count 1/1000th 2 1/1000th etc and i get to 30 for each side. Also if you have long hair you may want to clip it up so its not on your face. The techs will move your hair if they think its in the way. Im in a much better place now than 3 weeks ago. Hope you will be too.

Tkane10

I started February 21st, I’ve had 7/33,missed treatment #8 due to a snow storm that left us wth 40 inches of snow, so That will be added on at the end. The last 7 will be boosts. I am doing the breath hold since I am being radiated on my left side. I was told to use pure aloe for the first 2 weeks then pure aloe mixed with aquaphor for the last 4 weeks. My breast is already red and fatigue has been horrible since the 2nd treatment although I am not sure if that is mostly due to the 100 mile round trip.

Meg101

Hi Veeder,

I checked the link you posted for the Tube Top Company. There are some cute tops on that site, and they are reasonably priced. I think I might purchase a few. How are you feeling today? It sounds like you have some issues with back and neck pain. Those are my weak areas too. The only thing that works for me is Advil or other anti-inflamatories. I always take them with food to prevent stomach upset. If I take more than 2 a day, I need Pepcid AC. If it's not one thing it's another.

DanderRN,

The techs at my rads center said there is often a small amount of "scatter", but it's much less than several years ago. Yesterday I read about some women who are experiencing distant nerve and muscle problems decades after radiation. I wish radiologists would warn us about these risks before we start treatment. I realize the alternative of not doing these treatments carries more risk, but it would be good to know what could happen so we can take steps to lesson the damage. The good news is most of these nerve and muscle problems can be resolved with physical therapy.

I, too, will have the shorter radiation protocol with only 15 sessions of rads, and 5 boosts at the end. I was told the dose of radiation is a bit higher for each session which is why it takes fewer sessions. Apparently this protocol is common in Canada. From what I've read here on BCO, those who have the shorter protocol experience about the same amount of skin tenderness as those on the longer protocol.

Petey,

Most of my chemo buddies said that radiation is much easier than chemo. If we made it through chemo, rads will be a walk in the park. You and I have had a similar treatment plan and diagnosis, including lymph node involvement. The techs did not put any tape, tatoos, or marks my neck, back, or shoulders. Most marks were at the tumor site and under my arm. Your treatment site will probably depend on the location of your tumor, and the location of the nodes that tested positive. Keep us posted.

Meg101

Hi Tkane,

I heard about the snow storm that hit your area. It takes a few days to dig out and clear the roads from that much snow. I like how big snow storms have a way of bringing neighbors together.

Veeder14

Hi Meg101,

My back and neck are a little better after going to PT on Friday. Also, with this sinus whatever it is I was in bed all day yesterday which makes my back worse, up and walking around today. Antiinflammatories are the only thing that helps me (besides exercise and PT). I have a shot of Toradol scheduled after my first treatment. The Rad doctor called my primary requesting I get it otherwise they don't like to give that much medicine unless after surgery. Can't take the pills very often as it causes stomach problems. I'm hoping the Toradol will help a lot with PT on Friday afternoons when we get back into town. Will be staying Mon - Thurs nights at a hotel near the hospital.

Veeder14

I bought several of the tube tops hoping to wear these with strapless dresses, they work and are soft cotton. Haven't worn a dress since purchasing but looks like it will work for after treatments. I like that they can customize what your buying.

metoo2018

Hi all,

The information here is so helpful. I go for my consult on Friday the 9th and hopefully start treatments soon after. I realize how fortunate I am and that others have had to deal with so much more. I have a trip planned on May 10th - we started planning almost a year ago - 2 weeks in England. I am a little nervous that I won't feel up for it but can't imagine canceling. And it might be just what I need to put all of this behind me.

So far I appreciate knowing I can wear a shirt that opens and maybe just slip out of it a bit and thinking about soothing creams to start with right off the bat. Plenty of good advice here plus a spirit of all being in this together.

I do not know how many treatments i will need or what contributes to the number of sessions - truly hoping I wrap up in 5 weeks or less so I have at least a few weeks recovery before my trip.

Good luck to all.

FelineMum

Hello,

I had my consult on Friday. It was my second one. The first was last fall. Back problems, being on Xeloda (type of oral chemo) and too many questions caused me to push the brakes and get a second opinion. I'm glad I did.

So although I've already been mapped, tattooed (tiny dots that look like I poked myself with a blue ink pen), did my simulation and had one treatment; I need to do almost everything over. My plastic surgeon refilled my non-cancer side expander that was completely deflated for rads. Now I have an appointment on Tuesday to get it deflated again. I'll probably hear tomorrow when my mapping is.

I'm feeling kind of overwhelmed. I'll be driving 120 miles round trip daily. My support network is limited and I'm more emotionally tired of feeling like a burden than I am physically tired. And insensitivity is driving me nuts. As an example, I finished six months of chemo two weeks ago. Since chemo stopped, I look smaller because I'm less swollen and bloated. I'm actually down two clothing sizes. I've only lost 3 pounds since then (but I have been busting my butt since November to eat better and move more). All everyone has to say is how much better I look now that I've lost weight. Saying that what they're actually seeing is the impact chemo had on my body falls on deaf ears. And how about how much better I feel now vs. my size?

Anyways, I've stocked up on pure aloe vera, emu oil and Aquaphor. My rads onc said emu oil is fine to use. I like how well it moisturizes without the greasiness of Aquaphor. My aloe is in the fridge. I've been told that deoderant with aluminum is up to me, but it may irritate my skin. Many people have said that moisturizing immediately after treatment makes a huge difference and to bring moisturizer with me to apply in the dressing room.

My Super Clavicle will be radiated. I'm triple negative so every bit helps. Without rads, the odds my cancer will recur in the next two years is 50%. Rads could decrease that to 30%.