Radiation January 2019

KerLyn

Ok, I think I did my diagnosis correctly here, I'm posting to see if it worked....

egregious

Welcome H8BC! Hope you find lots of good support and encouragement here.

Good morning KerLyn, looks good on posting your diagnosis and treatments!

I'm two weeks post-rads and am in recovery. Some zingers and rough and itchy skin still. But it's getting better. Key to success: lubricate morning noon and night. I've used miaderm and eucerin with some aquaphor on tender areas. Also good to stay hydrated and keep eating enough, especially protein.

For new people, the simulation and the first rad are often the hardest. After that the treatments are much shorter and easier to understand. Wishing you all a smooth path forward

Salamandra

Thank you thank you!

Joytxs

Lilych- I’m getting 33 treatments due to 2 positive lymph nodes (explained by RO).

So far, it has been ok and I’ve only cried once as I laid there thinking “wth am I doing here”. Lol. The techs were sweet and I’m sure there will be more tears as I go.

As far as working while getting RADS, I go in every day to office and leave at 4:15pm to get to 4:45p appt and then I go home. I may need to take some time off in the coming weeks for fatigue. I’ve had friends offer to drive me to/from, but I’m ok right now. Sleeping has not been so easy and I hate taking Ambien every night, but I need my sleep so I do it If any of you have something that works, please share. I will try it!

All of you continue to inspire me to be a warrior

CHB87

so I know we aren't supposed to put ice directly on the skin but are we able to place a padded ice pack to the top of breast over a heavy sweatshirt? The swelling is driving me nuts. It feels worse than it is. I wake up feeling like it is the size of my head only to discover it is maybe a half cup bigger than the other

KerLyn

Day 1 down! My daughter was so great, she woke up extra early to make me coffee - such a sweet surprise for me! She was getting ready for school, and at 6:15am I told her to get in the car to go to school. At 6:45 and almost to her school she said “funny..we're normally just leaving for school" and I almost came to a complete stop in the road. My brain was so preoccupied starting rads today, I had her in the car 30 mins earlier than I needed to. I said “why didn't you say something before we left?!" And she said “dad and i talked last night and we said we were just going to make things as easy as possible for you, we'll let you be right about everything for the next 6 weeks". I laughed and cried so hard! We drove through chik-fil-a since we had extra time. LATER this morning....I had my first real radiation and it went so fast and easy after such a funny, sweet (early) morning.

DeeDeeT

KerLyn - That's so sweet about your daughter making you coffee and so funny about heading to school early!

CHB87-So sorry you are uncomfortable! I think extreme temperature changes aren't good for radiated skin. Now, I'm not the expert on skin care here, because I'm having all kinds of problems, but I do think I've read to stay away from heat and cold. I have really wanted something cool too! It sounds like it would feel wonderful!

So, I've been using miaderm, aquaphore, and now have added in cortisone (per doctor's instructions). I have nine more sessions (out of twenty). Guess what? I have turned from pink, to itchy, to red, to now peeling and I think my skin may be starting to crack. I'm doing everything I'm supposed to do, but my skin is just not happy. Wahhhh.

Well, I'm off to slather on more aquaphore. I just keep telling myself that it's almost over. We can do this to keep the cancer away, right?

carebearzzz

Hello all, this is my first time posting on this site. Wish I’d found it two months ago but it’s never too late. Hopefully my dx shows up below correctly! I wasn’t sure if my cancer is stage 1A or 1B as the doctor just said stage 1. Anyway-I have 4 more days of radiation left. Yay! Just the boost so not the entire breast-my tumor was on the left side of my left breast so it’s focused there for these last few treatments. My biggest issue has been skin issues. The pain on my nipple has been almost unbearable. The dr gave me a rx for Tylenol 3 last week and that has helped. I was hoping the boost would miss my nipple but unfortunately it hits it. I have tried eucrin, aloe, Buddha butter, a rx with lidocaine and CBD salve. Nothing has helped the pain much except I recently got lanolin, which is what breastfeeding moms use, and that seems to to help. I’m really trying to focus on being positive and get past this week and next and hopefully my skin will be heading back to normal but I’ve been told that it may get worse for a few weeks after treatment. I’m worried about that for sure! Looking forward to connecting with everyone

Moderators

Welcome, carebearzzz! Never too late to join us here, you'll need support throughout your journey! We're glad to hear you're almost through radiation, and wish you continued healing!

The Mods

Dani444

CHB86- I know exactly what feeing you are describing! I feel a heaviness/ swelling in my treated side. I keep checking in the mirror because it feels worse than it looks! I just need this implant to hang in there! I hope it gets better for you soon, how far into treatment are you?

KerLyn- congrats on one day down! I felt more comfortable after getting that out of the way. So sweet of your daughter!

DeeDeeT- ugggg sorry your skin is not cooperating despite doing everything you are supposed to. You’ve got this! Is the cortisone for the itching? They gave me samples of some cream with 4%lodocaine but it really doesn’t stop the itch for long. They also suggested spritzing with brewed green tea and that actually helps a bit with the itching. My nurse said brew a new batch every two days.

Carebearzzz- Welcome, 4 more days!!! You are in the home stretch. Then hopefully onto quick healing! Sorry you are having so much pain.

Joyride- It was my 2 positive nodes that brought me to radiation. We thought all along that they were clear because they looked good on imaging. Thank goodness that tumor board decided on rads instead of full dissection! Are they treating your intermammary nodes as well? I still have those moments where I am thinking it is just surreal that I am even walking into the cancer center. So I get the wth am I doing here thoughts I hope you can get some good sleep soon.

Wishing everyone the best as we continue on!

egregious

Welcome, carebearzzz!

Several of us share where you are in the skin journey.

My dermatologist said I could slather stuff on five times a day if needed, and it can be thick layers. I have used miaderm with lidocaine, cortisone, and aquaphor, which is thick, and eucerin, which is thin. Have been using both tylenol and advil when it's super sensitive. Sometimes it's better bra on, sometimes better off.

Today I figured out I could put a thick gauze pad in between my boob and my bra to keep it from hitting that ONE PLACE again and again. My radiation doctor said for sensitivity, use 100% aloe spray and keep it in the refrigerator - the brand I got is Seven Minerals, available on amazon. Nothing works quite as well as I think it should, and there are rough days and better days.

Keep lubricating, keep yourself hydrated, and let us know how things are going for you.

Suzyshacklechick

what besides egg is a good protein. Does anyone recommend a good protein powder I can have in hand to make a shake? Thanks

Salamandra

Kerlyn, that is so sweet about your daughter!

Carebearzz, I'm sorry you're having so much pain! That really sucks I just wanted to say that lanolin (and fragrance) was one of the things that my radiation oncologist office said to make sure was NOT in cream, and that matches with what is in the MSK radiation treatment guide. I have no idea why or whether other treatment center would agree, and but maybe just run it by your MDs just in case it's important?

As for me - I'm on my 5th day after my last treatment. And I'm SO TIRED still. I have dreams about being tired, dreams about falling asleep, dreams about being asleep. AGH. I really hoped I'd start bouncing back quicker and be able to make better use of this week of recovery. I'm supposed to go back to work on Monday and I really hope I'll be a lot less tired by then.

CHB87

Dani444 Yeees. Feels way worse than it actually is. I do the same thing, I double check, see that it's not really that bad and keep it moving.

Carebearzzz I am sorry about your pain. My nipple is starting to get sensitive and a bit tender. I take two Aleve before treatment and one at night. Seems to be keeping the sensation mild. the worst is when I get chills, I feel it right in the nipple Hoping the sensation doesn't get worse. I have to make it until the 13th of Feb! Hang in there, you are almost on the other side!

I have been giving myself gentle massages during the day (I have to remember to close my office door when I do it) and that does seem to help with the soreness and swelling.

Suzyshackle-I am not a dietitian by any means, however a good friend of mine is and I go to her for advice often. She says to stay away from Protein shakes and powders as they are not always reliable and can have adverse effects especially on the liver. She says stick to things like Eggs and peanut butter. I am not sure if you are vegan or vegetarian. If not, try things like Chicken and turkey. Almonds, greek yogurt, cheese, and beans are all great ways to increase protein. I used to do smoothies with greek yogurt or almond milk as the base, a spoonful of peanut butter, all the fruits i wanted and a handful of spinach. Now if your Dr recommended protein shakes, ignore me 100% but that is just my 2 cents on the protein/power shake industry in general.

Prissy

Hello everyone - This is my first post. I had my lumpectomy on December 12. Path report came back great! Clean margins and all three sentinel nodes clear. My lump was just below my left nipple and I am still experiencing soreness from the surgery. I graduated to sleeping without a bra 4 days ago. Met with the RO on 1/3 and go back Thursday to get marked up. I will probably start radiation the last week of January. I hope I will find out all of the details on Thursday. I really appreciate this forum. I have trolled it for quite some time. It has been very helpful!

KerLyn

I realized earlier how much more tolerant I've become (sorta) through this process...I was in the waiting room before my genetic testing appointment and the only other person in the room had her text sound on full blast and apparently sister had a lot to say, and somehow kept time with her gum snapping to the sound of her texting and ladies......this would normally be my own personal hell come to fruition. BUT....instead of getting all red faced and shooting her dirty looks....I am proud to say I kept my myself together....maybe snapping gum and texting is her way to deal...who am I to say? SNAP that Bubbalicious Gum and TEXT girlfriend...as loud as you want......HAHAHAHA

Suzyshackle- I too have a good friend that is a dietitian, and she has given me all the same advise as CHB87 typed. I will add that "most" insurance plans cover at 100% anywhere from 3 to 26 visits to see a registered dietitian, it is considered "preventive care", and given now you have diagnosis, that may grant you even more covered visits. Check your plan and see if there is a dietitian close! Its nice to have a tailor made plan or creative snack and meal ideas based on feeling well (and what you like to eat). Sometimes the dietitian will even grocery shop with you!

egregious

Welcome Prissy!

Hope you find the support and encouragement you need here.

Clean margins and clear nodes - that's something to celebrate!

AMLmom51

Bubbly, Congratulations on your baby!

Everyone's stories are so helpful!! I just had my second treatment today, so no side effects yet. After today's treatment I thought, "Since I can't see the rays they could be just moving the machines around and not doing anything." lol! They gave me aloe vera and a basic moisturizer. It sounds like I should be applying them a bit more liberally.

Joytxs - I have had trouble sleeping for the first time ever. Without fail, the night before an appointment I'm up all night. I was off work for my surgeries and chemo. I am returning to work this Thursday. Hopefully I could get back on schedule, otherwise there's going to be some long workdays!

Joytxs

AMLmom51, good luck on your return to work! Take it slow and ease back in.

Welcome, Prissy! These ladies have a wealth of inspiration to share.

Dani444, my Rads are focusing on 3 areas with the area by left collarbone being the reddest and itchiest now. For me, the pure aloe seems to calm it down, but itching is new so I’ll have to figure that out. Damn these extra rads and nodes.

Salamandra, I hope you get your bounce back to start back to work next week. I had no idea that Rads would be this tiring. I want my bounce back already!

KerLyn, I find that my patience with some people is better and with some worse. I can’t figure out this roller coaster these days.

Carebear, I have the lanolin, but haven’t used yet. I’m 16 treatments in and still using aloe and miaderm. What did you use for itching? Egregious, I am ordering the aloe spray as I spill half of the bottle trying to get it on me.

Deedeet, I’m with you on the Skin SE rollercoaster I’ve got to figure this out. The underarm is sore today and I’m getting the pinging pains now.

Wishing the weekend was already here..

FaceForward

So...I was in the Walgreen's with a list of items to get before my rads start. (Thanks to this site for the suggestions.) I was standing in an aisle when an employee came up and asked if she could help me. She was the sweetest lady. I held up my list and told her there were a few items I needed but I was mainly trying to narrow down my suggested healing creams. She looked a little puzzled so I quietly said I was looking for something to help with radiation SE's and I unconsciously sort of lightly tapped my right breast. Her eyes widened and she said, I'll be right back. Then she spun around and bustled off. I thought to myself, well, that was odd. A couple minutes later she appeared back next to me with several samples of various creams & ointments including Aquaphor, CeraVe, etc. She dumped them in my basket, touched my shoulder and with tears in her eyes she said, "Please, would it be OK if I prayed for you?" That was so unexpected and I was totally caught off guard. After a 10 second conversation. A complete stranger, in the middle of Walgreen's, crying for me. Asking permission to pray for me. Next thing I know, we're BOTH standing there crying in the middle of Walgreen's. That sweet woman will be forever in my heart. I guess I needed a cry and a reminder that the world isn't such a harsh place after all.

Suzyshacklechick

Thank you ladies for info on Protein shakes. I will ask dieticians. Had a bit of a set back yesterday at post op appt and Dr. had to drain fluid out of my breast and I have to go Friday to have her do it again with ultrasound. I had started using Ibuprofen because I wanted to stop pain killers and apparently that was a no no and could have caused some fluid retention. No infection but they put me on antibiotics. I wasn’t thinking that I should use ibuprofen. Now I know. Love you guys. Going online to order another binder bra like we got going home from hospital. I wonder if this will be comfortable for radiation? ❤️❤️

Salamandra

Thank you JoyTx!

FaceForward, that is such a sweet story.

I have to say, there have been moments of beautiful human connection and support.

Wouldn't you think SHE was the one tuckered out from radiation and recovery!

HPFULL

Hi Ladies, I'm pretty sure I'll be joining this group for January I see the radiologist this Friday. I was hoping to take time off of work for radiation. Are most of you doing that? I am feeling a bit guilty like maybe I should go back to work but would really like to not have to rush around to Rads then work which is stressful. I would rather take time to recover. If you are not working Did your Radiolosts give you a hard time about writing you out or is it common to not work during rads. I feel like people that don't have cancer are telling me rads is easy and no big deal, but I am not sure

Salamandra

Hey HPFULL,

I felt like I had a shockingly hard time getting a doctors note for rads. None of the oncologists seemed interested. My guess is that if I had pushed, they would have done what I wanted. But I ended up getting a note from the psychiatrist at the center at that was fine.

A lot of women do work through rads, but I don't think it's a little deal at all. To be honest, if it were men getting this treatment on their secondary sex characteristics, I doubt people would be so nonchalant about sending us to work!

That said, for some women, they barely have any side effects, and/or have pretty comfortable jobs, and/or find a lot of psychological value in going to work every day, and/or financially really need to work. So much respect and more power to them!

I have a pretty physically and emotionally demanding job where going braless would be unadvisable (teaching high school). On a pure time basis I could have handled the logistics but I think it would have destroyed my emotional health and probably future capacity to do the job, at least for a while. I also started getting the fatigue and skin sensitivity side effects after the second day of treatment.

Don't let anyone push you into what's 'no big deal' or not! Lots of people want to minimize everything to do with this stuff because it makes them feel psychologically more comfortable. For me, taking time off work made a world a difference to my quality of life and mental/emotional health.

If YOU feel like you would benefit from time off, trust yourself. I argued with myself for weeks. Was I just being a slacker? etc etc. Screw that. If I can't be a slacker about goddamn breast cancer what can I be a slacker about? What break has my years of responsible adult-ing and hard work and conscientious care taking of myself and others earned me, if not to take this time off?

So I'd say, listen to your gut. Be ready to pressure your doctors (if I'd have had to fight, I would have recruited my brother or another male friend to pressure the male radiation oncologist, or made another appointment and brought the paperwork to his female resident, whom I liked so much), and make sure you check and make sure that your health insurance coverage will not be impacted by your leave.

Prissy

FaceForward - your story brought me to tears!

Today I see my surgeon for a 2nd follow up visit and then the RO this afternoon to get marked up. One of my friends told me this appointment was emotional for her. My husband is going with me for support, just in case.

I really appreciate all of the advice given. I've already started slathering my boob with moisturizer several times daily. Never would have thought to get a head start on that! Also, there is a report from Mayo Clinic that states Wisconsin ginseng is good for cancer related fatigue. So I just started taking that in hopes that will help with fatigue issues.

I love the support here. Happy Thursday everyone!

Heather2018

Hi everyone,

First off, you all are so strong and inspiring! I'm grateful for this forum!

I start my radiation next week - 16 whole breast, 4 booster. I'm have a fair complexion and am concerned about discomfort. Ideally, I'd like to continue to work out at the gym during treatment - provided I feel up to it. Anyone have suggestions for keeping physical activity in play?

Thanks!!

Heather

CHB87

one day away from completing week 2 of 6. 4 more to go!

I am noticing that the fatigue really gets ya by the end of the week. I am good Monday-Wednesday. Come Thursday and Friday, I am begging for my bed. I am sleeping through the night, which hardly ever happens for me so I must be tired. Today I am drinking all the water hoping for a pick me up

Salamandra

Hey Heather,

I totally think you'll be able to keep working out, especially if you can be flexible about timing. (Eg., if you're exhausted in the morning, being able to go in the evening instead).

The one caveat I'd say is that by basically the third day I did NOT want to wear a bra any more, and my skin got more and more sensitive to any pressure against it. If you have, or can find, a really soft work out top that still holds you in enough to do the exercise you want, that might make all the difference.

KerLyn

CHB87 I’m right behind you in treatments! This is my first week, 4th treatment today and I’m tired. And I was asleep last night by 8 and STAYED asleep all night. I am doing ok so far, no redness yet, and I’m applying miaderm 3 times a day hoping I stay ahead of some of the discomfort.

I spoke with a lady in the RAD waiting area today who was going back to work today after taking time off since May for her cancer journey. I’ve been thinking about her all morning, I hope it’s a good day for her!

CHB87

KerLyn radiation partners!!! Same for me with skin. I have been using the Miaderm since jump street and so far I just see a little pink by the end of the day.