Radiation April 2019
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Fritz - that great news! You made it through. I’m 4 weeks out and justover the fatigue. Pretty much back to normal - I might even go to the gym this wknd. Still sore thought - suspect that will take some time. The great healer.
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Congratulations, Fritz! Enjoy all that regained time!
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RosieRed cannot moisturize enough right? I now have the "tan lines" and just a little peeling. Scheduled for bone density baseline scan in 2 weeks before I start my 5 years of Anastrozole (Arimidex), hoping for minimal side effects!
Hugs!
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Saw my RO today. He was pleased at how well my skin has healed. Don’t have to see him again for 6 months. In the meantime I’ve set up appointments to see my PS and MO. it’s nice not to have daily appointments to run to anymore.
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RosieRed --- I know -- it's so nice not to have to see a doctor for an extended period of time. Maybe we can feel a little mentally normal for a while. I think I've had more doctors visits in the last 6 months than I've had in my entire life --- and I'm old!!!
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Tomorrow will be 1 week since my last boost. My skin is surprisingly mostly healed. I saw my PS and he said my skin held up better than most patients he’s seen. My armpit is peeling thick pieces of skin still, but it’s mostly new skin now. I’m afraid to take some of the stickers off just yet because I worry it’ll peel skin off with them, so I’m waiting until I’m 100% healed, or they fall off on their own. Hope you’re all doing well!
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Yesterday was my last treatment. Got my radiation graduation certificate. While I won't miss the treatments I will miss the wonderful people there. So thankful to be done with this part.
Most people say that radiation is the easy part but that wasn't the case for me. I went through chemo relatively smoothly with few side effects but radiation has been difficult for me. Maybe it was the 45 to 60-minute drive each way plus still dealing with the bilateral mastectomy, ovary removal (hello hot flashes), starting anastrozole, fatigue and the actual radiation. While I was able to work mostly full time through chemo I finally asked work for some shortened hours and to work from home a few days a week. Work was very understanding and helpful. Since doing that I am feeling better and more like myself.
When I first started radiation, a tech said that "It's the same every time." That didn't turned out to be the case for me. First I had two different treatment plans, one with a bolus to bring the radiation closer to the skin and the other without. Then there are the xray days and coordinate days. The days where things don't line up just right and they have to adjust me 3 times. Having to get off the table as they reset the machines because armpit area got pretty bad and they stopped the bolus treatments last week. It's been lots of little things both physically and mentally that just made it so difficult for me.
One day I broke the radiation machine, or it broke while I was on it. They did the normal 2 x-rays, and everything is lined up right. There's usually music playing but for some reason it wasn't playing. Before each section is radiated there is a buzzing noise. The first buzz happens and then all of a sudden there is this loud BAM! Not sure how I didn't jump but I held my position. Asked "What in the world was that?" They called in a repair technician and reset the breaker that has apparently been thrown. All the time I'm laying on this lovely table. Everyone goes back out and they try again. The breaker throws again but thankfully not nearly as loud as the first time. So, it's down off the table and go wait to see if they can fix the issue. Chat with the gentleman that gets his treatment after me to pass the time. 3 hours later they finally say that it won't be fixed today. Next day comes around and I get a call at 2:30 that it is up and working. Headed off to the VA and thankfully got my treatment with no problems.
My skin got very red, rough and a bit weepy with the bolus. Once we stopped it my skin has recovered nicely. Now it looks like a little bit of sunburn in the treatment area except for the scar area which is redder.
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TrishaFL - congrats on finishing rads. Sorry it wasn’t as easy as some people say. If it’s one thing I’ve learned during this journey, it’s that if someone says that one treatment will be easier than another, don’t believe them. None of it is easy.
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I saw the radiation doctor two weeks ago & received my skin markers. I haven’t heard anything since. How long after the surgery do they usually do the radiation
Doris
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Doris, I had to wait about 6 weeks because I had to do PT to regain my full range of motion. Once I did my simulation and got my markers I started within days. 2 weeks after simulation seems like a long time. I’d call the office and check.
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Hi Doris,
I had surgery in Oct 2018 and started RADs in April 2019. That’s later then recommended, which I understand to be anywhere from 4 - 12 weeks. Fatigue lasted another 4 weeks. Skin has healed very well though and it looked quite bad for awhile. Thank God that’s done.
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Hi Doris,
I had surgery first, then chemo, and then radiation, so my timeline may be different than yours but here it is:
Surgery: 12/10/18
Chemo: 1/17 to 3/21/2019
Radiation: 4/24 to 5/21/2019. For this, I had my "setup" appointment on 4/18, and started on 4/24.
Anne
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from 4-12 weeks is standard of care
Some women have started a bit earlier
or later outside of that window- for
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Saw my PS today. It’s been over a month now since my last rad and he’s happy with the way my skin looks. He asked me what I used during radiation and I told him aloe and Miaderm. He looked up Miaderm and read the ingredients and he said he was glad that I did use it throughout radiation. He said that he’s going to confer with my RO and see if it’s possible to have my exchange surgery in 3 months. If not, then we will wait until 6 months have passed. I didn’t think he’d want to do it so soon, so I was quite surprised. We will see what happens.
Hope everyone is doing well.
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I got the call today & I go tomorrow for set up & pictures. Then rads start Thursday morning. Unbeknown to me they were waiting on approval from insurance company. I received the letter yesterday telling me of their approval.
This sure blows a hole in my summer routine for sure. I don’t think I will be getting much sun this year. Haven’t gone out of the house much so far this season. One reason we have had an excess of rain & cool weather. We have a camping trip planned for July 4th which we had told radiation doctor about. He said we could skip one day, but not two. We will have to come back to get treatment then go back to camp.
I’m getting tired of holding my feelings in, ive been cheerful throughout this ordeal, but I’ve hit the end of my road! Now I’m looking forward to radiation burns, NOT
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Hi Pommom, Good luck with the start of radiation! And make sure to use good moisturizer as often as you can - multiple times daily if possible. I used Aquaphor throughout and I know that others have used Miaderm, both with very good results meaning with very little burn. In my case, just very dark reddening and some slight peeling after it was over. But I think it's made my lymphedema flare up which is very uncomfortable.
As for getting sun, try to brace yourself for having to stay out of it for some time. Sun exposure and radiation treated skin do not mix! I've seen recommendations for keeping the treated skin out of the sun for at least a year. I'm going to follow that recommendation myself, difficult as it might be.
Holding feelings in can be extremely stressful. Why do we think we need to protect other people from our feelings? Do we think they can't handle it? Or that we can't handle their reaction?
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Hey, Pommom - it's Annie from our October chemo group. I hit the halfway mark today with rads. I am red and a little sore, but this is no where near as bad as A/C or taxol. You can do this. How many treatments are you doing? I use Aquaphor three times a day. I know what you mean about trying to stay positive. I get really tired of people telling me how "brave" I am. I am not brave - just getting done what has to be done with as few tears as possible. I am somewhat fatigued from the rads. We'll get through this together.
Annie
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Annie60 I remember you from that group. I am getting 30 treatments which if all goes well my ending date is August 1. Saying we are brave is not cool since we have no other choice. We have had bravery foisted upon us! The thing that bothers me is the breath holding I have to do. Holding my breath for 30 seconds is pretty hard, but by the end I probably will be good at it!
PiperKay staying out of the sun will be a challenge for me. I love summer sunshine & heat. We are always at flea markets & festivals. Also will be camping over July 4. So I guess long sleeves & lots of sunblock will be the order of the day. Will have to use one of my parasols & wide brimmed hats!
Doris
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I am about four weeks out after 30 treatments and three boosts. See MO on Monday. Also taking Tamoxifen since March. I cannot seem to shake this fatigue and still have the occasional shooting pain in my breast. Hoping this passes soon.
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Hi Kareba, I just finished rads yesterday, and then had a treatment wrap up conversation with my RO. I asked about the fatigue and he said it can take anywhere from four to six months to fully move out from that fatigue. I must have looked a little surprised because he hastened to add that it gets better, slowly but surely, but that if I do find I'm wiped out, not to be surprised.
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6 weeks post rads tomorrow, these 6 weeks sure went much faster than the 6 while in treatment? Everything healed pretty quickly and the "zingers" which were 4-6 times a day have subsided the past few days, Yeah! Positively quite a bit smaller on the rad side, onco says it will continue to shrink for 6 months to a year so I will wait and see how much smaller it will get. Honestly I am just happy I kept it!
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Doing good here. It’s almost been 8 weeks for me. I’m tan where the radiation hit, but that’s about it. I still get really tired from time to time....like someone took the battery out of my back and I just want a nap so bad. I see my MO tomorrow for a follow-up.
Hope all is well with everyone.
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I did #14 today, first one without the bolus. My skin is starting to redden, but is not sore yet. I don’t seem to be all that tired which is a first since this whole thing has started.
Unfortunately I still am having the neuropathy problems. I finished the last Taxol March 27 & there has been no change in the condition of my feet or fingertips.
My hair is growing, but very slowly only about 1/4 to 1/2” long. It’s sort of a salt & pepper color, was mostly white.
Doris
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Nice to hear from you all. I have two boost left. I had to take a break with 9 treatments left - thank goodness my rad techs were on the ball and got the RO and he said time for a break. I'm red and sore but ready to be done.
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Annie60, I hear that! I had #21 today & my skin is getting really red & have one itchy spot. My skin feels tight around the chest again. I’m supposed to have 5 boosts which I think I’ve had a couple this week. Not using the bolus anymore. I, too have 9 treatments to go, then I get my part removed August 14!
Doris
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Hi Doris I am done with my radiation but oh so sore. I had 25 treatments. My skin is ugly and really really hurts. My last day was Monday, the 15th. I was told it would get worse but didn't believe it. I use a prescription steroid on my skin 2 x a day. I also have been using Miaderm and Miaderm L (with lidocaine) I think it helps. I have now switched to Lidocaine and Aquafore. I want to keep the area moist because it's blistering and peeling. My team gave me some Mepilex Pads which really really help. See if they can give you some. (They are quite pricey on Amazon) I wear them where I have skin to skin contact (like under my arm). Also if you wear a shirt it makes it so the cloth brush your skin. Hopefully you won't have this kind of reaction but if you do....
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I finished rads on Tuesday. I am red, but not too sore unless I am bumped. The break around July 4th really helped. My techs were so wonderful. I put on Aquafore 4-5 times a day. I am tired of being greasy, but I really think it helped. I use a steroid cream for the itching. We drove 50 minutes one way for 7 weeks. I was so glad to stay home today. I was told that the radiation works on tumors for 2 weeks. So tired of treatments. I took a two hour nap today. My 7 year old granddaughter had open heart surgery and we had our 4 year old granddaughter for a week, then our 7 year old and our daughter plus the 4 year old for another week. All of this, plus radiation. I love having them - I think it kept my mind off of me. Now on to hormone inhibitors.
Annie
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Annie, I finish August 1, have six more to go. My skin is getting pretty red, but I’ve been told it looks great at this point in time. It’s starting to itch in places, nothing I can’t stand.
Dori
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I wish I had joined this site while I was actively undergoing treatment. I had 20 radiation treatments-16 whole breast and 4 boosts. I was told that they were aiming to my chest wall too bc my cancer was so posterior and close to the chest wall, but I did not have a bolus as some others here have stated they did. I was re-positioned for the boosts to lie on my side in kind of a strange position to get the surgical area and the chest wall. My first treatment was April 8 (which also happens to be my birthday. Every time someone asked what I got for my birthday, I told them radiation lol!) My last treatment was May 3.
Anyway, my skin held up very well, better than I ever expected. I got barely slightly pink and gradually turned a little more tan and my areola got darker and a little dry. Even my boost area held up well, just turning slightly darker. Other than some itching and a slight bumpy rash that was barely visible, that was it for my short term side effects. I never had any peeling or blistering or open skin and just had some very slight flaking in one small area. I did get some episodes of sharp stabbing pain off and on through the month of June, but those have all but completely disappeared now. I also noticed that the areola was still quite dark and much larger than the other side. I am just now noticing this week, just shy of 3 months out from rads, that it is lightening up and becoming closer in size to the other one, although it is still larger.
My biggest concern at this point is that the entire breast is still a tad swollen and slightly larger than the other one and has been since the surgery. I figured that it would shrink with radiation. I do still have a seroma or hematoma from the surgery that is very very slowly getting smaller, so some of the overall breast size could be from that, and the surgeon said that he did pull a little tissue from my side around to help fill in the space from the lumpectomy site, which is on the outside of the breast almost under my armpit so it could be from that too. That actually provided a good cosmetic result, and between that and the hematoma/seroma, I have no apparent dent at all yet from the lumpectomy.
I keep reading that many end up with a breast that is smaller after radiation, so I am just curious if anyone had slight breast swelling after radiation and if it is normal. I do have my follow up with my RO in two weeks, and I will be sure to ask about it, and I have my follow up with my BS in about a month. And who knows? When this hematoma or seroma or whatever it is finally does resolve, the whole breast might cave in and shrink up on me. Yikes!
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