Radiation January 2019

Salamandra

I'm 39 and I did the hypo fractionated. I had 16+4 days boost. The radiation oncologist didn't offer any other options. This is at Sloan Kettering and they have a good reputation and seem to be very by the book, so I'm kind of surprised to hear it's officially only for older women, at least in the states.

I started side effects FAST (fatigue and redness from day 2.5) but they didn't get worse than they started off, so it wasn't too bad. Except now that it's done I have some little burns in a very annoying spot on the underside of my breast.

Heading back to work tomorrow. EEEEEK.

OTMom

I'm doing 4 weeks starting tomorrow. I assume it's the 16+4 boost. There's definitely a boost involved- just not sure of the exact numbers. I also wasn't offered options. This is just what they do for this particular scenario. Boston area, age 41.

I'm still having incision pain, so am kind of worried about how this will all go. My cancer was upper inner quadrant, so the incision is kind of front and center. I work with infants and toddlers, so with kids sitting on my lap, climbing on me, etc, it gets bumped a lot over the course of the day. Not looking forward to increased sensitivity when it's already awkward and uncomfortable.

Good luck with your return to work, Salamandra!

CHB87

I'm doing 6 weeks. I believe it's 25 plus a week of a boost. I was hoping for 4 weeks but I'm guessing my age (31) played a factor.

egregious

Welcome, Tomichi, dolcevita, Parrhesia, and Mymomsgirl!

Hope you all find the support and encouragement you are looking for. It's helped so many of us to share the radiation experience with others going through it at the same time. I was in December and am wrapping things up as side effects are tapering off.

I had 16 treatments but no boosts as the invasive piece was small. The doctors told me I was eligible for this shorter period of treatment but not clear whether that was because of age - 67.

Choosing whether to do radiation - it reduces your chance of recurrence. I sure wouldn't want to go through all this again anytime soon. One woman uses this as her signature here: "Everything is doable. Not easy, but doable." This certainly covers life during rads.

Lubricate (starting before rads begin) - Hydrate - Share your stories

TC73

Hi, I am 45y and am doing 16 + 5 boost. I wasn't given any options and to be honest I didn't know that I had any - again this just goes to show that there is no 'one size fits all' to treat this crappy BC... I'm really happy with how my treatment has been going and so far (I have 4 treatments + 5 boosts to go) my SE have been really minimal. Moisturiser, lots of water, and a gentle walk around the park have all helped me.

Joytxs

Egregious, I bought the aloe spray you mentioned and I'm using it straight from the frig. It definitely helps with cooling and the itch. Still using the Miaderm and Aquaphor. I ordered a Lindi skin cooler roll on Amazon that I read about on another thread that I hope helps as you can cut the roll to the size you need.

I hope all of us still in rads and those who are recovering have a good week.

HPFULL

Hi Joytxs I didn’t see the brand of spray on aloe.can you let me know? I am debating buying the Miaderm cream as I already have so many fragrance free thick creams. Do you think that particular brand is worth it? I am excited to see how you like the Lindi cooler roller pads

egregious

Hi HPFULL,

The refrigerated aloe spray I got was Seven Minerals. Use within two months of opening. It's pretty fast relief for the desperate itchies.

Miaderm is expensive and good. There is also a kind of Miaderm that has lidocaine for extra surface pain relief. There are other creams that also work. My dermatologist has me on Aveeno eczema balm which I use for overnight care.

She said I can use moisturizer often during the day, nothing wrong with slathering up five times a day if needed. Also ok to use some cortisone like cortaid. There is a kind that comes with aloe. During the day I use cortaid once and use miaderm and other creams the rest of the time. Still taking tylenol and NSAID for general discomfort.

Three weeks out I am definitely healing, color beginning to look more normal, like a heavy sunburn that is peeling. The new skin underneath looks healthy and pink.

This too shall pass! Then back to normal life I hope.

Raysal

im 34 and today completed my 15 sessions. Tomorrow ill be in the final stretch with the five boosts. Initially i was supposed to have 25 sessions, so i dunno whether the reduction has to do with revised guidelines or something else since when i first met my RO she saif because i was under 40 the protocol was at least five weeks. Had i been over 40 (or closer to 40) she could have considered the shorter schedule. So no idea.

Not sure if its hypofraction? I know its IORT, not sure on the difference.

KerLyn

Congrats Raysal! Home stretch! How are your SE's?? I just started week 2 of 6. I text the countdown to my family after ever session. 24 more today. I can't wait to be in the single digits like you!!!

My house went live today, so getting it "show-ready" every morning after RADS should me busy and with my daughter coming back from an ACL injury, hitting the gym with her in the afternoons is a FULL day! The tired hits, but not too bad so far.

HPFULL- I've loved the Miaderm. My hands feel awesome too using it. These dry winter's do a number on my skin and my hands and cuticles look so good....bonus!

carebearzzz

Hello all! Happy Monday. I had my last day of rads on Friday-yes! I’m 48 and had 16 days full breast and 5 days of a boost. My doc gave me the option of a longer period-33 days or a shorter, more intense time of 21 days. He said he’s found those doing 21 days seem to do a bit better with SEs. I am still having skin issues, unfortunately and wonder if I had done the longer but less intense period if it would have been better. I’m hoping yesterday maybe was the peak of it and it will start getting better now vs worse. I know it can be bad for a couple weeeks after it’s done but I’m trying to make mind over matter work! Sometimes it does but sometimes not so much. I am going back to work on Thursday either way I think the distraction will help.

It’s been surreal to think of myself as a cancer patient as well. I feel so lucky to have caught this early and not have had to do chemo that it doesn’t really feel like I do have cancer. Actually now that radiation is over, I don’t think I’m considered as having cancer anymore per my onc so that is great!! Now onto Tamoxifen-hopefully the SE’s are minimal as I truly hope to never ever have to do this again

Dani444

Congrats on finishing carebearzzz! I am heading into my last three regular treatments, then 5 boosts to my mastectomy scar and skin. I will be so ready for this underarm area to start to heal, it is so irritated and angry red. I see the RO today and am going to ask if the amount of swelling I have is normal. Hope everyone has a great week!

DeeDeeT

I'm 44 and today I finished session 16. Tomorrow I start my 4 boosts and I'll be done!! I started turning pink very quickly. I have been quite fatigued and I have a pesky rash. It hurts. A lot. BUT. . .I'm in the home stretch. Woot!!!

I did not really get options about my treatment. I did meet with my doctor every week and she checked the placement for my initial radiation and my boost.

I got to remove some of my stickers today!! (My facility uses marker+stickers, instead of tattoos.) I was so happy! I was able to take off the ones on my sides and the ones down the center. I just had to leave on the stickers that mark the area for the boost. The techs told me that the last few sessions should go a lot faster. This should be exciting. Maybe like a NASCAR pit stop? Because seriously, I am in and out everyday as it is. I am trying to decide how I want to celebrate being done. I had been treating myself to a good coffee every Friday after treatment, but this Friday, I may need to change it up. Hmmmmmm.

DeeDeeT

CONGRATULATIONS, CAREBEARZZZ!!!!!! Wooo-hoo!!!!!!!

HPFULL

Congrats carebearzzz!!!! That is so exciting that you are DONE and congrats on being at the finish line Dee Dee! Thank you KerLyn and Egregious I bought bothe Miaderms with lidocaine and without and have the aloe in in Amazon basket. My simulation is tomorrow and I am ready to get this show on the road

egregious

Hey carebearzzz,

YOU DID IT!!!

CONGRATULATIONS!!!!!!

Wishing you well in the next part of your treatment journey.

CHB87

Congrats Carebearzzz!!!!

I started week 3 on Monday. I have to ask them about the machine tomorrow. I swear it is buzzing longer than it used to (mine makes a buzzing noise when the beam is on). Normally the noise stops, then the machine rotates, but lately the noise has been going while it rotates. Makes me so nervous that I am getting far more radiation than I need. I mentioned it today and they said for sure the beam was off when it rotates but I know it was rotating today while the beam noise was going (I am not sure if the beam is actually on or if it is just the noise). I know I sound loony but I am going to really advocate for myself tomorrow.

Dani444

DeeDeeT- Good luck as you head in to your boosts. I am almost to my boosts and so ready! I am happy for you that you were able to remove some markers!! They use stickers at my center as well. I hope you do treat yourself after your final treatment, you deserve it. I still love the idea Purplecat had in the December rads group for a BCO retreat! Then we could all treat ourselves.

I hope your fatigue lifts quickly and your skin heals quickly too after your final treatment!

Prissy

Congrats to those of you who have recently finished! Definitely a reason to celebrate!

And welcome to the newbies who have joined since the last time I posted. I am glad you are here, but certainly wish you weren't. That doesn't sound very welcoming, but hopefully you know what I mean.

Egregious - I know you finished a while back. I'm glad that your skin is slowly but surely returning to normal. I hope you will hang around this group. Your advice has been invaluable!

My journey has probably been a bit different than normal - but really there isn't a normal when it comes to breast cancer treatment. I was diagnosed Sept 2017, three days before my 60th birthday. Because my cancer was invasive but NOT aggressive (my surgeon said I'd probably had it for 5 years and yes, I'd been having regular mammograms) I chose to go a more holistic route first. My oncologist wanted me to do Chemo first, but I really wanted to avoid that if at all possible. In May 2018 I added Anastrozole to my treatment to help reduce the size of the lump. September 2108 I stopped holistic therapies because it was no longer covered financially. Though I know it really helped my body to fight the cancer, it was also very time consuming. By Thanksgiving I was ready for my lumpectomy which happened on December 12. Most of this time I haven't really felt like a cancer patient. The first 2 months I certainly did - going through all of the tests, meeting with doctors, surgeon, and the emotional toll of talking to family and friends. It was absolutely exhausting! Certainly having the lumpectomy and getting ready to start radiation has brought it back front and center. Can't avoid it with scars on my breast and permanent marker and stickers all over my chest! I go back next Thursday for my simulation, and then start treatment on 1/28 for 4 weeks. I am SO ready to get this behind me!

Grateful for all of you warriors! I think of this group often as we travel this road none of us wanted.

PurpleCat

Just popping in from the December thread to see how those who carried over into January are doing. DeeDee and Dani, you are so close to being done! Time to think about celebrating!

I've been done for just two weeks. I had 15 regular sessions plus the five boosts, so it's really been three weeks since I had a whole-breast zap, and that skin looks really good. Not like the un-radiated side, but definitely heading toward normal. The boosted area is a bit more pink still but also improving quickly. The nipple is looking a lot better too and really isn't painful any more. Today I don't think the breast is any more painful then it's always been at certain times of my cycle. So, those of you still going through it, it really does get better! I've been pretty sleepy in the afternoon, but that might not be related to radiation. I am set to take my first tamoxifen pill tonight, and I am a little nervous about that, but keep telling myself what it's for and that if it's unbearable I'll just talk to my doctors about possible alternatives.

Hang in there, everyone! One day closer!

DeeDeeT

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Thanks for the encouragement, everyone!

Purplecat, nice to hear things are going well for you!! That's so encouraging! I'm following your Tamoxifen journey now. I'm scheduled to start in two weeks after I finish. Praying all goes well for you!

Today has been rough. I don't want to scare anyone, but I'm so red. I hurt so much that I'm nauseated. It's pretty bad. I get migraines and I think the pain is triggering a migraine today. It hasn't happened too much, but wow. It's been a hard day. I wasn't going to say anything here, but I realized by not saying anything or by sugar-coating everything I may not be helping someone else who may also be having a hard time.

I have been surprised at how difficult this experience has been. The staff has been great. My family has been very supportive. I don't have a bad diagnosis. I have disappointed in myself that I just physically have had a rough time with this. My skin has not tolerated this well. Today, just the slightest brush of fabric against my skin is enough to make me nauseated with pain. It's not good. I'm thankful I'm almost done with treatment. I love hearing from others that it does get better!! Thank you!!! I'm really, really hoping I will do better with Tamoxifen!

Three more days!!

HPFULL

Oh Prissy I sooo relate to your post. Today I had the CT and stickers placed. I met with the RO on Friday and I have been exhausted ever since. It seems like everything has caught up with me. I am so ready to get this going. Sound like we will be starting at close to the same time

I have been having pretty bad pain where they took part of my nipple and along my side and arm. Dee Dee I hate that feeling of nothing being able to touch it! Thank you so much for being honest. I am happy that you are almost done and I hope your pain subsides. 

I have been a bit nervous about the pain of radiation or sensitivity since it seems I already have so much after surgery which doesn't seem normal. When I told the PS about the pain on Monday he told me to touch or aggravate the sore area while at the same time saying to myself that this doesn't hurt so I can retrain my brain. That was when I broke down. I started crying in his office which made me mad at myself for breaking down in front of him, I just thought is was so messed up.

Dani444

DeeDeeT- sorry you are having a bad day. I am really really red, with some patches of brown and purple. I understand the irritation, sensitivity, and pain. None of this is easy so be gentle with yourself. Your body has been through a lot!! Rest when you can and know the end is in sight!

Salamandra

Aww DeeDee, that sucks.

I'm two weeks out now and have these painful areas of irritation/blistering under my breast. I forgot to get more bacitracin for it. Ugh. But I'm back to work so wearing a bra over a chemise. The fatigue is still there. I wish I could have taken more time. I wish people took radiation more seriously as a treatment. I get that for some people it's very mild but not for all of us! And not all jobs are the same either.

I wish I'd had the option of stickers instead of tattoos! I never had any tattoos and no plans for them and I don't love that now I've got these permanent dots on skin that I otherwise really liked (clear, etc). I didn't find them painful at all, really, it was such quick pokes. I don't know. I'm going to just live with it for now but I read that some people get them colored over in their skin color, and I'm thinking of that. Also wondering whether removal is possible for such tiny things. Or who knows, maybe get them enlarged into some kind of designs. I have four of them.

carebearzzz

Hey all! Thanks for the well wishes! I am rooting for all of you as you finish up as well! My skin is still raw and hurting but each day it will get better. I found a little round lump, about the size of a marble in my armpit yesterday and am a little worried about it. I wonder if it could be swelling or something related to the lymph nodes being removed? 😳

Dani-I hear you about the armpit! Dang, mine hurts so bad, I’m so over it! Hang in there.

Deedee-did you think of something to do to celebrate when you finish? I’m sorry you had a bad day, I had one of those too where I just broke down. I felt terrible but it passed. Yesterday was a pretty good day. Today I’m hurting some but hope it gets better. The whole pain thing with this has been surprising to me too, my skin has not liked itnone bit! I thought my biggest problem would be fatigue I’d take the fatigue over the skin issues for sure. Hang in there!

CHB87-did you ask about the machine making noise? That does seem odd!!

Wishing you all a good day

Prissy

DeeDeeT - Thank you so much for your honesty. To me, that is what this group is for - to support each other on the bad days and celebrate the good ones. I hope today is a better day for you.

Carebearzzz - hope your pain gets better as the day goes on.

Hpfull - My breast is still very sensitive from the lumpectomy as well. I'm 5 weeks post surgery and a bit surprised at that. It's improving, but very slowly. I'm already slathering myself with cream to begin hydrating my skin and my breast is so tender!! I'm grateful I don't start radiation until the 28th to give me more time to heal. I just started back at the Y and I'm avoiding doing any classes that involve any kind of bouncing. And I am so glad to have the permanent marker/stickers vs. tatoos!

I am heading out this afternoon to buy a couple of cheap bras and camis. Such a good idea to do that.

DeeDeeT

Thanks so much for the encouragement, everyone. Seriously. Y'all are the BEST!

I was able to see my oncologist today after my boost and she was very sweet when I told her about how things went yesterday. She told me to start taking Tylenol and ibuprofen, alternating them every three hours. I should also keep moisturizing. She predicted things may get even worse over the next week and half or so, but should improve dramatically after that. She thinks my extra pain with nausea is related to my migraines and said that the radiation therapy does have muscle involvement, so the deeper muscle pain, as well as the obvious skin pain is triggering everything for me. She also told me that our center has a 24/7 hotline I can call if I have more issues in the future. I'm feeling a lot better about everything today.

Carebearzzz-- yikes about the new lump!! Every new find now is so scary. I'm sorry! About celebrating on Friday, I haven't really thought of anything too exciting. Funny how now just being finished is making me really happy! Before, I wanted to do something really special and now just being done is it's own reward.

HPFULL-- Retrain your brain to not mind pain? Ugh. No wonder you cried. (((GentleHugs!)))

Salamandra--I'm sorry about the tattoo situation. You would think they would have given you an option, since our treatments aren't for very long. I think you have some good ideas for dealing with them, though. Maybe they will fade over time? You are right, though that radiation can be rough on some of us and should be taken seriously. I hope your return to work is going well!

Wishing everyone a fabulous day! Thank you for wonderful support!

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egregious

Hey HPFULL

The person who told you to retrain your brain so that you won't feel pain needs to retrain his ATTITUDE. That is some seriously messed up stuff. This can HURT. And it can hurt, on and off, for an annoyingly long time.

What could actually be helpful is thinking - "it won't always hurt like this. Sooner or later things will start getting better. My sisters here on the forum report that it does get better." So cling to that.

We all have our rough days. I have tried to power through and some days the power is off and everything is dark. We need to reach out to loved ones and say, I need extra love and comfort and kind words and hot chocolate today.

Couple of thoughts:

If you're having rads on your lymph nodes remember to moisturize all the way up to your collarbone, and all the way into your armpit even reaching beyond it a little to where your back starts.

If something starts hurting or a lump suddenly appears during treatment, our first thoughts are of new cancer. But this is super unlikely. We are wary and intimidated and ready to pounce on new symptoms as being ominous, when they are just small things usually. Of course always good to check with your doctor.

Lubricate - hydrate - ask for cocoa - share your stories

Dani444

Salamandra- I found THIS online. Not sure if they would be in your area. I had remembered that I had seen a news story about this. Hopefully someone in your area participates in this! This treatment is definitely not something to be taken lightly. It is very hard on our bodies and going back to work while you are still healing is a challenge for sure. How long after you finished did the blistering start up?That is a clever idea of putting the bra over the camisole! I am still wearing my Ana Ono camisole instead of a bra. It has no seams and the shelf bra is on the outside. Gentle hugs to you as you continue to push on!

Carebearzz- It would make sense that the lump you found could possibly be scar tissue from where they took the nodes. Are you going to put in a call to your surgeon? Sorry you have to worry about this. All of this just plain sucks.

DeeDeeT- That is great that your center has a 24/7 hotline, I am sure that is a great comfort! I am so sorry you are struggling with your migraines on top of everything else!

I am going in today for the last regular treatment before boosts. I have been so emotional lately, I am tired of being uncomfortable and getting nervous about starting tamoxifen. At work last night I felt annoyed when someone asks how I feel and I say "I am pretty uncomfortable and really tired." I usually get a response of " Well you look great." I actually look pretty lopsided as my reconstructed breast is really swollen and obviously a different size than my natural breast. Kinda wish now I would have done a BMX. Also I am really over the fact that the parts of my skin that are numb start to itch and I can do nothing about it!!

My whining is over

Labmom82

Thank you for your replies egregious and hpfull. I am doing between 6-8 glasses a day now. Today will be day 5 of radiation and first time seeing doc since starting. I will see him every Wednesday they say.