Radiation January 2019

Labmom82

Hi everyone. Today will be #9 for me. Just now starting to see some skin changes. A little darker and the skin feels tougher but not really any pain, minor discomfort. Doc gave me Mometasone steroid cream to use twice a day at visit 5. Hopefully it will do the trick.

CHB87 and determinedat54, I too am having a lot of shoulder and neck pain. I have fibro and RA so being in that position is not helping.

I am trying to work through radiation but am only working half days as it is just too much all day. I am also only working 4 days a week to try and help with fatigue. I am hoping I will be able to work the entire time since I only have 20 total treatments but we shall see. I can also work at home sometimes when needed. I have a great boss and have been with him for 22 years so I don't have to worry about taking off if I need to. Blessing for sure. But I am also the only one who can do my job so I feel bad if I can't get it done.

What does everyone have planned to celebrate the end of treatment?

Labmom82

Suzyshacklechick, it took about 4-5 weeks for my hematoma to be absorbed. I wore a compression bra, and massaged it, that was it. It slowly went away.

egregious

MissCommunication - welcome! Sounds like you are well on your way in your radiation journey.

Re stronger products, I used Miaderm - and sometimes MiadermL with lidocaine - throughout with pretty good luck. When my skin was raw I used Cerave or Aveeno Ezcema Balm, both specifically recommended by my dermatologist. I share your concern about applying petroleum products, but think of it as a temporary necessity for healing your raw skin.

Hope things go well for you, and keep us posted!

determinedat54

I've wondered how the number of treatments we receive is determined. I'm guessing it is some sort of algorithm. I will have a total of 34. Seems higher than most of what I'm seeing on here. The last 6 will focus on the chest wall. Is this a “boost"? Not sure of the terminology

DeeDeeT

Dani- I've been thinking of you today! You are so close to finishing!!! Yay!!!

I am blistering, so I decided to at least call in and check in with my nurse at the center. She told me to continue using Aquaphore. That's their standard treatment for blistering. It's pretty gross, to be honest. If I don't keep aquaphore on it, it gets crusty. Ewww. I really, really want this to heal soon. I'm ready to get my normal life back.

MissCommunication

Thanks so much, Egregious!

MissCommunication

I appreciate the recommendation, Salamandra! So glad to hear you're back to work and have energy for optional Saturday activities. Hooray for progress!!

Joules44

Hello everyone! I'm new to this forum but not new on this website. Finished Taxol almost 3 weeks ago and just finished my 4th radiation treatment today. I'll be honest, it has been harder for me than chemo. Not physically harder, at least not yet, but emotionally it's draining. Standing there topless with 4 nurses looking at me with their shirts ON. I think all the nurses should be topless in solidarity. I had very few problems while on chemo so I'm hoping for the best during radiation, but it just seems scarier to me. I met a woman last weekend who just stopped radiation after 2 weeks because the fatigue was so bad. She was just done. I hope that doesn't happen to me. I want to complete the 20 rounds.

Started Tamoxifen 2 weeks ago and it has been fine so far. Happy to report that!

HPFULL

Day 1 down and it was quick and easy as far as not pain and it was fast. It was a weird feeling being in that room alone, not sure how to describe it. The whole cancer thing has definitely been a bit mind blowing

Determined- not sure about formula, but I have 33 and was told I couldn't have the shorter more intense sessions as I was also having my lymph nodes done and it would be too much...maybe that's the case with you since they have to do your chest wall as well? 

OTMom

Got a 3 day weekend because the RO was closed for the holiday yesterday. Back at it today. Day 5 down.

Also coming closer to a plan for the hormone treatment. Prior to BC diagnosis I'd spend most of the last year trying to sort out some intensifying pain issues I've been having. Finally had a gyn appointment today that confirmed endometriosis. Best combined approach to BC and endo is ovarian shutdown and AI. So, assuming my dexa scan is OK and there's nothing surprising in my genetic testing, I guess that's where we're headed.

Misha13

Well, set up was today. I have marker and stickers on me in three places. Simulation and first treatment next Wednesday, the 30th.

A lot of you are having more than me and I had a ton of positive nodes! I'm getting 28 sessions! I guess there's a difference in dosage??

Jen-I'm a teacher too! I start back the second week of February. I've been out this entire school year! I miss it so much!

KerLyn-Wow! Maybe you could share that stretch that popped one of your cords?? My PS is giving me a month to see if I can do it on my own before she sends me to p/t. Sounds like it's been a good thing for you!

HPFULL-Glad your first one went well! Keep on truckin’

OTMom-My tx after rads will also be the ovarian shut-down and the AI. Hopefully it works well and with few side effects!

TC73

Welcome to all of the new ladies - sorry you have to join us.

For everyone who is just staring - try not to put too much pressure on yourself and take each day as it comes. Sending positive thoughts to you all.

I'm a tired, my skin is red, I have a rash (that's itchy), but it's not too bad - I have 2 treatments to go. What I'm looking forward to the most is not having to go to the centre every day 😄

Heather2018

Hi everyone,

I'm 25% of the way through my radiation regimen. So far, everything seems ok but I've been experiencing random stiffness and pain in my knees and wrists. It goes away very quickly. Anyone else have this?

Hope you all are well!

Heather

determinedat54

HPFull, that’s probably the case. I had 6 positive nodes. Thanks for the input.

KerLyn

I don't know if any of you have Instagram, my RO is doing a “day in the life of a radiation oncologist" Instagram story for Penn Medicine all day! It's kind of neat to see what it looks like before you go through the process! And she's super cute, and fun. If you have Instagram, follow penn medicine and you can watch her throughout the day.

Dani444

I. AM. DONE. I got to ring the bell !!!! A few of my friends came to join in the celebration. I brought my techs a bag of goodies from a local chocolate shop and they had signed a card for me. The also gave me a sweet certificate and my nurse navigator presented me with a handmade pillow. The pillow was made by the wife of a former patient, and she volunteers her time to make pillows for survivors.

As far as healing is going I think I am doing pretty well. It has been 5 days since I have had the treatments to the chest wall and nodes. The last 5 boosts were to my skin/scar. I am sill pink, and peeling but I am seeing improvement everyday. No more angry red!!! The irritation in my underarm area is slowly decreasing as well, and I will be sooooo glad when that is 100% better. I still have the chest wall tightness, but I can feel improvement everyday with that too. Keep up the strong work ladies! I am grateful for all of you.

PurpleCat

Yay Dani!!! 🎉😁🎉😁🎉

OTMom

Yay for finishing, Dani!

Misha- here's hoping on the few side effects front. I won't be too far ahead of you with starting most likely so we can compare notes.

Fatigue is definitely kicking in. Last week I wasn't sure if it was the RADS or from life in general. Today I was trying to get a sleepy little guy to stay awake with some jumping and moving and had to quickly hand him off to his ABA therapist and sit down because my body suddenly hit NOPE. So tired I'm dizzy and nauseous at times. I need the distraction of working, but this could get hard. Ugh.

Mymomsgirl

So it is official, tomorrow I will begin my 15 treatments. Today I had my image verification and they said I did perfectly. I am doing the DIBH with the snorkel and nose plug. It isn't too bad, I just keep telling myself that this is better for my heart long term and I'm all for that. I've been told that at most it should take 15 minutes to get setup, do the treatment and be out of there. I'm ready to start this chapter and check it off the list.

On another note has anyone who is Stage 1 met with their MO and have them start talking about chemo even before their Oncotype score is back? I was a little thrown since everyone I've talked with has been - surgery/radiation/tamoxifen, but this guy kept going the direction of chemo and I wanted to chat about the tamoxifen side effects. I think I need a new MO since whomever I'm looking for someone to have a 10 year relationship with.

egregious

Hey Mymomsgirl,

Good luck on your rads tomorrow! The first one is by far the longest, then you'll be in and out of there in no time on the rest.

Chemo for your diagnosis - I am not a doctor - but seems like way too much for where you are with the cancer. Maybe get a second opinion.

OTMom, rad fatigue is real! I had trouble holding up my cheese sandwich at lunch. Good that you are able to sit down and take a break.

LPLlibrarygirl

Hooray for you, Dani! I hope you continue to heal and feel better every day. What a sweet gesture that your facility gives a handmade pillow to all of the RAD grads!

DeeDee, you finished too. Well Done! I hope the blisters are healing.

TC73 you are almost finished too. Hang on for a couple more days. And when it's over...it's not really over. Continue to hydrate, lotion, exercise and rest when you can.

Heather, I was lucky to have an easy time of radiation, at least with skin issues. I'm sorry to hear about your aches. With me, it was my shoulder. Stretch when you can.

Welcome to so many new people! You will find great advice and support on this thread. Wow, lots of teachers on this thread. Has anyone studied which occupations have the highest incidence of breast cancer? I am curious (and a retired teacher and now working part-time in the children's room at the library). Good luck to all of you, especially all of you who are working through radiation and taking care of your families.

TC73

Congratulations Dani. That was super nice of your techs and nurse navigator to help you celebrate being finished.

Good luck tomorrow Mymomsgirl - you're got this.

OTMom - RADS fatigue is real, just do what you can do and look after yourself.

HPFULL

Dani- what a sweet celebration you had today. Everyone sounds so kind. What a beautiful send off.

OTMom- Glad you listened to your body and rested.

Mymomsgirl- no I haven’t heard of an MO bringing up chemo a bunch. Mine Mentioned that if my Oncotype score came back high then I would have to have chemo but that he thought it would come back low. I am stage llB

I met with the social worker/therapist today and I actually feel a lot better I think I’m gonna end up switching my PS and My MO. I need to advocate for myself and be able to ask questions and get straight answers about se and surgery options since the reconstruction did not go well. I agree with you @ mymomsgirl.... it’s going to be a 10 year relationship with some of the doctors so its

Jen2Mom

Has anyone experienced mouth sores during radiation? I've only had 3 treatments but today I woke up with the corners of my mouth red and painful, almost like cold sores...I've never had issues with cold sores before...is this a related side effect or have I picked up something new?

DeeDeeT

Yay, Dani!!! CONGRATULATIONS!!!!! I am so glad everyone was very kind to you on your special day!!! Isn't it wonderful to be done? Take extra care over the next week or so. 👏👏👏

DeeDeeT

I'm always happy to hear so many of you are doing well with your treatments. I hate to share negative news, because I'm still thankful for radiation treatment. I wanted to give this cancer everything I could. I'm youngish (44) and do not want to have a recurrence.

That being said, I am going to share what is happening to me, but please feel free to skip this if you don't want to hear anything negative. Because again, even with this, I would still choose radiation.

I am still blistering. Even more than I was at the beginning of the week. It hurts. A lot. I am also peeling. It's not like a sunburn peel. It is bright red and deep. It's painful, kind of like a rug-burn. It is like the skin is being ripped off, not like it is just peeling off after a sunburn. Sorry for the graphic description, but I just wasn't prepared for this. It did not start off this way, but it is getting progressively worse, not better. The outer areas ARE starting to heal. But, the area with the blisters is still quite bad and the area that's peeling is also very bad. I did call my doctor and was told to use aquaphore. I am allergic to most antibiotic creams, so there aren't many options.

I was told I could expect this to be bad for two weeks before healing. I didn't realize how painful this was going to be. I am migraine prone, so the pain from this is triggering severe migraines. This includes nausea. It's been rough. My encouragement in this is that it is temporary. It should get better soon. I am so impressed by the ladies here who are working through this! You are amazing!!

I hope everyone else has a MUCH better experience!!

---

Parrhesia

Congratulations to those, who have successfully completed their rads and good luck to those that are still having theirs

Thank you Mymomsgirl, Salamandra, egregious, PebblesV and Ingerp for your kind interest and concern regarding my inquiry. With your input, encouragement, a liitle bit more research and another consult with my radiation oncologist, I have found peace of mind in 16 rads + 4 boosts (Canadian protocol) and today I had the ninth session out of twenty.

I must be among the lucky few, who have not yet experienced any severe side effects apart from the itching and muscle stiffness. Despite the fatigue, I can still work out moderately and stretch everyday while doubling my water intake. As doctors do not let any patients to use any moisturizer around here (if it is not absolutely necessary), I am hoping that I do not experience any dermatological side effects in the following days.

Mymomsgirl - We have similar profiles and I had a similar discussion and confusion after my surgery regarding chemo as well. Before the surgery, my surgeon and medical oncologist informed me that I would probably not need any chemo since my tumor (as it appeared in the biopsy) was 1.6 cm, grade 1, stage 1, ki67 %10, ER +PR + Her2-, no node involvement. It seemed like a very treatable one with rads and tamoxifen. After the surgery, the tumor came out to be 1.3 cm, Grade 2, stage 1, ki67 %47, ER+ PR+ her2-, no node involvement. Combined with my relative young age of 38 (BC before 40 is considered to be more aggressive in the literature), they have focused not solely on the Stage, but on Grade 2 and ki67 being %47 and decided to offer me a moderate, light treatment of chemo, 4 rounds of taxotere and cyclophosphamide to be on the safe side regarding recurrence statistics. As far as I am concerned, they had the tendency to categorize my tumor as Luminal A before the surgery, but more like a Luminal B after the surgery due to my ki67 score. At the time, I had a second opinion from another medical oncologist. She suggested me to go for the mamaprint (she had more faith in it as it does not have a middle ground like Oncotype; its results were either "yes go for the chemo" or "no it would not help you anyway"). With respect to her experience, I would come out as an intermediate category in oncotype anyways (you may check Magee equations of UMPC) and that would not help much in my decision. In the end, I was just about to take mamaprint when she discussed my situation with her board and she was also concerned about my relative young age and ki67 % being 47 (this suggests that tumor may be more aggressive than it was thought before) and she also suggested me to take the "light chemo." Long story short, I did go through chemo to be on the safe side and did not have severe side effects (thanks to the tips I found here in the forums) apart from losing my hair, eyebrows, lashes, constipation, mood swings and hot flashes.

In this context, I strongly suggest you to take your time to make your informed decision Mymomsgirl and take a second opinion from a medical oncologist that has your full faith in.

To summarize;

a) if oncotype comes up very low, the literature gives the low profile bcs the chance to skip chemo

b) If oncotype score comes up intermediate, b1) one may either insist for a mamaprint or b2) take the light chemo.

b1 a) If mamaprint tells to go through chemo, then one kind of need to do so to be on the safe side

b1 b) if one has a very low score on mamaprint, one does not need chemo as chemotherapy does not help much with Luminal A tumors anyways.

At least, the above mentioned summary was what I had made up of my discussions with doctors and literature review at the time. I hope I could be of help.

I wish you all the very best in this struggle

Ps: Music is a wonderful form of therapy. Here is a link to a wonderful song that fills me up with resilience: Mike Rozakis - Flower Power

Misha13

Jen2Mom-When that has happened to me, it seems like I am dehydrated. I haven’t started yet, but I’ve read that we need to double our water intake for rads! I hope it’s not mouthsores!

Congrats to all the ladies finishing!

Dani444

Thank you everyone for the congrats! It really does feel great to be done.

DeeDeeT- I am so sorry you are having these painful blisters and peeling. I hate it they can't find something for relief. Could you ask about silvadene cream? Seems I have read other folks on here using it, it is probably hard with all your allergies though. Sending air hugs ( sounds like even a gentle hug would hurt:( and healing thoughts your way. I hope you turn the corner soon and get some pain relief.

OTMom- Oh the fatigue is so real. Just go easy on yourself and try to rest when possible, and don't forget to hydrate!!! Your body is going through a lot and you have just recovered from a significant surgery as well. There were definitely nights at work where I experienced exactly what you described. Just hit a sudden wall and your body says, "I'm done" Good news is I feel that lifting everyday since finishing.

HPFull- I hope your hunt for a new MO and PS goes well. Glad the social worker was able to help. .

Parrhesia- Oh the itchiness can drive you crazy, at least I found it annoying, especially when my numb areas would itch. So you are not allowed any creams? Is that all the time, or just not before the treatment. My center had me spritz with brewed green tea and when I did it seemed to help the itching a bit. You might ask about that.

Off to work the next two days but Saturday I am celebrating being done! Going out to eat with family then out with friends after that. Heck I may enjoy a beer even though I really shouldn't

Salamandra

DeeDee that sucks! And don't feel bad about sharing, that's what we are here for. Plus it'll be more helpful for anyone else who comes along with something similar.

I wonder if you could bug your cancer team to refer you to a dermatologist who might be able to work with you to find something that will help your skin and pain without aggravating your allergies?

Parrhesia (love the name), I'm glad you're off to a good start! That was a really interesting summary. Because... our tumors could be twins. I also had 1.3cm and grade two and I'm 38. BUT my biopsy did not test for k67 and I got no number for that. When my margins and nodes came back clear, my doc sent the oncotype. They all seemed completely unsurprised that it came back low (9), said it was all concordant with my pathology, and never mentioned chemo again. If my lab *had* tested for k67, who knows how things could have happened differently? I had not heard of a 'light chemo' before. I wonder where are you located/getting treated? I'm thinking about asking my MO about it at the next appointment. I feel a little unsettled now.

LPLibraryGirl, I was thinking about the teacher thing. Actually, I doubt that it's that we get more cancer. My guess would be that we're more attracted to text-based forums like this, and also more likely to have decent health insurance (though I realize that's changing in some states...) to catch it at an earlier stage and get this kind of treatment.

God I wish I were retired. My job is stressing me out now. It's not always easy to remember that I like teaching. Just now I kind of wish I had some kind of desk job where the temperature is predictable and I can go to the bathroom whenever I want.