Radiation January 2019

egregious

For people starting or continuing radiation in January 2019.

Welcome! Let's share our stories.

Salamandra

Thanks for posting this egregious! Also I've been meaning to tell you I love your user name and I wonder if there's a good story behind it?

I'm continuing on from December. January 3rd should be my last day of treatment. Soooo close.

For people starting - I'll say that one thing that surprised me is that I'd read that for a lot of people the fatigue and redness don't really kick in until part or even most of the way through. I got both very red and very fatigued by the middle of my third day of treatment. I freaked out a bit that it was a bad sign. But in the end it didn't get worse, so it was just annoying. So basically, don't panic if the symptoms hit you sooner, it doesn't necessarily mean they'll hit you harder.

egregious

Hi Salamandra,

You're right that the fatigue and redness are surprising when they arrive. You think well I've made it fine for the first few times, and then it starts getting harder. The middle part of rads can be challenging while you just hold on and mark the days off on the calendar. Then the sweet end is in sight. Looks like your time is soon. We celebrate with you!

The nickname means something that has gone too far, which I have been known to do in life on occasion. I always thought it was a funny word. Started using it on social media.

Sending good wishes for a healthy new year to all!

KerLyn

This is my first post on the site. I start radiation this week on Friday - 6 weeks. My doctor found the lump during a routine physical on November 7, I was in for 3D mammogram and ultrasound the very next day, biopsy and diagnosis from that biopsy the next week. Met with the surgeon and had a 3T MRI (night before Thanksgiving) the week after and had my lumpectomy/lymph node mapping and biopsy on November 30. Things moved FAST! The tumor was under a centimeter, clean margins, 10 lymph nodes removed (my surgeon was shocked the lab teased out what he thought were 4 nodes ended up being 10) and all clear! I've had some cording, PT has been amazing for that. I never even took the prescription pain meds after surgery. I was driving 2 days after and shopping with my teenage daughter. I am PRAYING radiation goes as smoothly as the rest of this has been. I had breast augmentation surgery several years ago, I've been told my implant will be all wonky after this, but to have had it removed during the lumpectomy, I would have had to have a tissue expander in whether I choose new implants or a lift. I was told if I had the implant totally removed, my breast would go from "a grape to a raisin" during radiation.....YIKES.....when these 6 weeks are over and I've had a chance to heal, I will remove the implants and have a lift. At least for now, I've already got a "place holder" and hopefully, I'll have something to work with. I've taken stock in Miaderm, any other ideas? OH! and in the midst of radiation this month, we will be listing our house as my husband's job is relocating us back to my home state....its exciting and happy, but WOO....it will be a lot in the next 6 weeks. I am looking forward to comparing notes throughout these next 6 weeks and getting ides on how to stay energized and comfortable. I did buy a few super soft bras at Soma.

Bubblybubbles_1

hi everyone. My radiation started in December and ends on January 21st. I was diagnosed with stage 2B breast cancer just after 2 days of giving birth to my daughter (it was a csection). I had 8 rounds of chemo, lumpectomy and 14 nodes removal and now radiation. So far, I am doing very well . The skin is getting dry and turning darker but nothing else as far as the side effects.

egregious

Welcome, KerLyn!

Hope things go smoothly for you during your radiation. Stock in Miaderm - that’s funny! Many of us have experienced increasing fatigue during this time. Sounds like you have a lot going on with your life. Keep us posted!

Bubbly, wow cancer diagnosis right after a c-section... that’s intense. Wishing you well going through this next phase.

KerLyn

Bubblybubbles_1 wow! That was so much at once! I'm so happy you are doing well so far and I hope you had a wonderful holiday season celebrating all the "firsts" with your new baby!

Raysal

hi everyone.. started my rads in decembee, just completed 8 sessions out of 20 and ending jan 21..

Biggest side effect is the rash even though ive been slathering with lotion, also muscle tightness similar pain to after snb, but thats because they radiated the muscle.. otherwise managing alright.

For those who are starting this month, its less scary than it seems and the sessions are much faster than expected - at least thats how i found it

Dani444

Hello everyone, I recognize some peeps from December rads group! I started in December as well and will finish on Jan 23. I have done 17 treatments so far.

Best of luck to all those just starting. I feel like this gets emotionally hard at times, more so than what I expected. I am sure that just comes with having to go to the center 5 days a week! My SE sound very similar to yours, Raysal. I too am having redness/rash and the muscle tightness is really annoying. It does feel a bit similar to how I felt post op. I am getting rads to my chest wall and axillary nodes so I guess it is to be expected. My RO just says to take ibuprofen. Stay hydrated and keep slathering on that cream!

TC73

Hi all, I started rads in December and am due to finish on 24 January. I'm only five treatments in and already I have muscle tightness, but no redness/rash or fatigue. Seeing my RO tomorrow and I plan to ask her about the muscle tightness.

Dani444 - I agree as I was leaving treatment today the emotions got to me, I can't even explain what brought the tears on... I just need to remind myself to take it one day at a time 😄

Sending positive thoughts to you all.

Salamandra

I finished!

It was a lovely day. Clear weather for my bike ride. I was in a great mood and chatted with people, exchanged numbers with one lady I'd spoken with a couple of times previously, rang the bell, traded a thank-you Pokemon to the receptionist who plays, took myself for pizza after, biked home, took a nap, and now eating nutella. I'd been very stingy on the steroid creams and lotions through the boosts because I needed to preserve the weak-ass vegetable dye marking, but I bought a big tub of the cream I fell in love in with (Cerave healing ointment, fragrance and lanolin free, vaseline-based with hyalauronic acids and ceramides) and have been slathering it on.

I'm trying to start psyching myself up for returning to work soon, and I'm glad I still have some time off before then. The fatigue has been shocking and enduring.

Tomorrow, it's my cat's turn to go to the doctor! hahaha!! (just an annual, she is fine). I just need to find her carrier. I'm sure it's around somewhere...

egregious

Hey Salamandra,

YOU MADE IT!!!!!

WOOHOO!!!!

OTMom

Congrats on finishing, salamandra!

I’m at the other side of treatment with mapping and setup this morning. In the craziness of the holidays and returning to work I kind of pushed this whole thing to a corner of my mind and am having a weird mental/emotional adjustment to returning to the reality of my diagnosis and treatment. After surgery I was able to just be at home and focus on recovery. A little overwhelmed at the idea of juggling treatment, work, parenting, and all the follow up appointments now. One step at a time...

Salamandra

Thank you!!

OTMom, I am not a parent, but I also felt overwhelmed at the idea of handling treatment and work. (I'm a teacher, so a very 'on' job that requires a lot of planning and work after hours too). I really wanted to work through because I haven't been in the system that long and don't have that much paid leave, and really liked the idea of preserving it. But it was really messing with my mind to try to work. The two or so weeks I went back after surgery before taking off again were an ordeal. Now I'm really nervous about going back. And I have to remind myself that I really liked my job before all of this started! Trying to force myself to work through was a mistake. Mental/emotional health is health too, and I think that this diagnosis does have a large mental/emotional component that I feel gets really neglected by most doctors. I'm really lucky that I was able to (after multiple tries and advocacy) see a psychiatrist through the cancer center who was willing to write me a note for work when both the surgeon's office and the radiator's office were being very cagey about the whole thing. Like it would mess up their stats or something.

That said, I know that plenty of women have worked through radiation, and you may not be in the position of having a choice at all. Try to take good care of yourself and don't feel like you have to pretend that everything is ok or 'act like normal', which is advice I got from a lot of well meaning people. That's just gas-lighting yourself and adds extra stress, in my unhumble opinion

Good luck!! Where in the country are you?

Joytxs

Congratulations Salamandra! I am completely jealous, but happy for you!

Today will be 14 of 33. Skin a little red, using aloe Vera and miaderm 3x daily. Can anyone share their skin progression story through treatments?

I’m very tired now. Can’t imagine what I’ll feel after 33..

LilyCh

My wife just had the initial consultation with the RO on Wednesday and the RO sounded like the treatments would be 20 (16 regular plus 4 boosts) and that translates to a total dose of 52.5 Gray (16 * 2.65625 + 4 *2.5).

I was wondering for those of you who have more than 20 treatments (Joytxs, you have 33?), what are the total dose and why so many?

Thanks.

egregious

Hi LilyCh,

I think 33 is standard. Some patients are able to tolerate an accelerated plan that delivers the same total grays in half the time, not counting boosts. It's based on the several factors, honestly I wasn't paying attention very well during that part of the doctor visit. So much to think about.

Joytxs - you might do fine on skin! Mine was like yours, then got darker as the days went on. Wised described the overall sensation as like having a headache, except in your boob. I got swollen, heavy, and itchy by the end but my skin wasn't too bad. Keep up the good work with lotion 3x a day. My symptoms did intensify for a couple weeks after rads were over, and now that is lifting. On the plus side, no more daily trips to the hospital. So take it one step at a time, and share your symptoms with the medical staff there (and us of course!)

LilyCh

egregious, thanks. that is interesting.

However, I just read an article (https://www.breastcancer.org/treatment/radiation/t...) and it says:

"...In 2018, the American Society for Radiation Oncology updated its guideline on whole-breast radiation therapy. The current guideline says that most women diagnosed with breast cancer who will have radiation therapy after lumpectomy should be treated with accelerated whole-breast radiation therapy as the standard of care. The preferred hypofractionated dose schedule is 40 Gray in 15 doses or 42.5 Gray in 16 doses...."

I was wondering if the "current" guideline would be the "standard" guideline.

CHB87

Just finished week one of 6!

So far, I have some swelling (more swollen today than yesterday) but given that I just had a breast reduction and my period is due by the end of next week, and the fact that, since surgery, my left breast (cancer boob) has been the bigger one, it is hard to tell what is from radiation and what is just coincidence. Little nervous to see the swelling (scared of lymphodema) but from what I am reading, it seems like swelling it par for the course. I am going to speak to the Dr next week about what I can do preemptively to avoid lymphodema of the breast...I just got these new boobs, trying to keep them looking nice and perky as long as I can gosh darnit!!!!! I was reading that excercise will help so I hit the gym this morning for a mild go on the elliptical

A little nervous that the swelling started so soon (first week but third day with the holiday) so I am hoping my boob doesn't swell to the size of my head when I am done. Mild amounts of redness...been using the miaderm religiously.Crossing my fingers for an easier time.

Salamandra

My doctors office prescribed mometasone steroid cream to me, that I used daily and up to twice a day. I think it helped a lot. I didn't ask for it, it just came standard. Then they said to use any cream that was fragrance free and lanolin free. I found Cerave ointment, which is so nice and creamy and I love it and I'll probably keep buying it for general use.

My skin turned red practically right away and stayed red. It felt very warm to hot throughout the whole time. Towards the end it started feeling heavier and a bit harder too. The nipple turned a bit darker and got more sensitive. My breast got a bit uncomfortable though never painful. I found the "radiadres" gel pads they gave me really nice, seemed to cool things off, draw out the heat or something (though it was terrible at sticking).

For me the feeling was less like a headache and sort of more like a cut that's starting to scar and heal, how that can get all hot and sensitive. Anything I wore left lines/markes on me and it was much nicer without a bra.

But it never got worse than that, my skin never broke or anything. I freaked out a bit because the redness and fatigue came on so fast and hard, but it stayed pretty constant.

CHB87

Salamandra congrats on completing!!!!

Did anyone use any massage techniques to reduce the swelling?

OTMom

Thanks, Salamandra. I was a teacher for 15 years, so I completely understand the intensity and how hard it is both to be out and to work through things. I'm glad you were able to take the time you needed. Good luck with the return. I can imagine going back feels pretty daunting. I left teaching a few years ago to go back to school and am less than a year into my first job as an occupational therapist. I do early intervention, which is wonderfully distracting because working with infants and toddlers requires full engagement and usually makes me laugh. However, the back and forth between "cancer patient" and "totally fine, nothing's wrong" is pretty hard. Starting the day with a full force return to cancerland and then working for a full day today meant that every moment I wasn't insanely busy I was on the verge of tears. I imagine it gets easier, but it was a rough day and reinforced my plan to do my radiation at the end of my work day. Since I'm new to my job I don't have a ton of time off and used what I could to take 2 weeks off for surgery. I need to preserve what I can for all of the follow up appointments plus snow days and random kid illnesses so am trying to work through treatment but if I can't I'll just have to take unpaid time.

I'm all marked up and ready to go. They offered next Wednesday as a start date, but I decided to push it to the following Monday so I have a week of normalcy to work out the scheduling with my supervisor and to see all the kids in my caseload another time since my presence has been a little spotty between surgery and the holidays. I kind of wish it were starting sooner because this in between phase is kind of hard, but I do appreciate the time to get myself organized and make a plan. The extra skin healing time probably doesn't hurt either.

For now, I'm just glad it's the weekend.

FaceForward

Congrats to all you brave souls who have (or are about to) finish your treatment. I go for my simulation on Jan 10th. Not looking forward to starting rads but I'm definitely looking forward to ending them so that's where I'm trying to focus my thoughts. My right breast is the problem child and after my lumpectomy it went from being the slightly smaller sister to the new big sister. My RO & surgeon both kept saying that would change and in the last 4 days it has done exactly that. Now it's pretty much back to where it's always been in the family order. ...just in time for the rads to change it even more.

TC73

Hi FaceForward & OTMom - welcome to the group, but I'm sorry that you have joined us.

Joytx, sending positive thoughts and a hug your way & congratulations - you are nearly half way through your treatments. Stay positive, you have got this 😄

LilyCh - that's an interesting article. Since DX I have learnt from this forum that it's uncommon for two people to receive the same treatment plan. I am having 21 treatments (7 completed), I'm unsure of the total dosage - maybe I should know but to be honest I was more interested in how many treatments I would be having.

For skin care I am using Nivea and Aquaphor morning and night; I also take a small tube of Nivea with me and straight after treatment (before I get dressed) I cover the area with more Nivea. The ONLY reason I am using Nivea is because I was advised to stick with my regular moisturiser. So far it's working for me, but I also have Aloe Vera on hand and ready to use if needed.

KerLyn

I love reading the "I'm half way there" and "all finished" posts!!! Congratulations to you all, keep posting the good news (and post not so good news- so grateful to be learning from you!) I can't wait to post one of those! I thought my first day would be yesterday, but instead it was another simulation type appointment. I was under the machine and they made sure the beams would hit where they are supposed to and I got even more tattoos. About a 45 min appointment. My arms started to get all tingly having to sit still for that long again. Thank Goodness the actual appointments will only be 15 mins! Thinking back, I'm sure my RO told me about this additional "sim". She said after the CT sim, her plan is reviewed by several other doctors and everyone agrees and then I start. SO, my REAL first radiation treatment will begin on Monday, I got a calendar print out and everything...ready to roll! I asked for earliest possible time, I drop off my daughter at her school at 7am, might as well get it knocked out on the way home, right? I was also kind of thinking I would then have time to nap before having to get back out and pick her up. I keep hearing faitgue is a common SE.

DeeDeeT

Deleted my double post. Oops!

DeeDeeT

Hi everyone! I guess it's past time I hopped over here and said said hello! I started rads in December.

Congrats to Salamandra!! Very happy for you!! I see other familiar names from the December board! Congrats on making it this far!! Woo-hoo!!

I've enjoyed reading the posts here. Thanks for sharing your stories!

As of Friday,I have reached the halfway point! I am doing, um, okay. I'm very, very tired. I am also pink and rashy. I started itching a lot. My doctor asked me to add in cortisone cream before I use miaderm. She said it was "unusual" that I'm reacting as much as I am and she wants me to use it 4xs a day to see if it helps. She had seemed distracted when I met with her before, but this time, when I had an issue, she did give me her full attention. I felt better about her after that. Mainly, I'm just happy I am in the home stretch now!! Best wishes to everyone!!

Suzyshacklechick

Hi! I am going to be a radiation newbie. Just had my lumpectomy 12/27/18 and go for post op Tuesday. Not sure when or how many rads are scheduled but happy I was told about this group. Thank you

egregious

Hi KerLyn,

If you want to share about your diagnosis and treatment at the bottom of your posts, go up to the top of the page and click on My Profile, then My Diagnosis and My Treatments, remembering to hit Save at the end

Welcome, Suzy!

Raysal

congrats salamandra on completing rads!!!

Im half way done!!!

Tend to quickly get tired, need lots of breaks during the day and in the evening the itchiness gets a bit bad.. otherwise managing alright.. hope to continue this way!

H8BC

Hi All,

I'm very impressed by all of you who post and are so courageous - it's inspiring. thank you.

I, too, will be a radiation newbie; starting Jan 14th for 25 trmts. Has anyone had radiation with a tissue expander in place? I guess they will radiate the nodes in armpit, my chest wall and the supraclavicular nodes. Not sure how it will go with the TE in place.