Starting Radiation in July 2019
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hi. Mom finished chemo. She had 2 tumors. One removed by lumpectomy and the other one was discovered on mri afternoon lumpectomy. Since chemo done we want a BMX. Doc said she won’t need rads but it was in one lymph node. Thoughts?
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Interesting day today at radiation. They decided I wasn't getting enough radiation to my skin, so I got fitted for a mold that sits over my breast and channels more radiation to the skin. I'm curious, in a morbid way, to see how it impacts me. So far, I've been blessedly side effect free.
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Hi USFknights - having a mastectomy does not necessarily mean you avoid radiation, especially if you had it in a lymph node. Especially if you are triple negative. My RO explained there is a formula that is applied that takes many things into consideration, including lymph node involvement, hormone status, tumor grade, position of the tumors, etc.
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kber - so that's what they meant by getting the skin.. I am wishing you all the best and hopefully they will do whatever needs to be done with still minimal side effects to your skin.
SJWhitten - I am trying to figure out how and when and what to wear. Since my mastectomy was done on one side, I cannot avoid wearing the bra during the day, I kinda knew it would be coming and I tried to ask the doctor but they didn't have an answer. Not wearing the bra means sore breast, wearing it means skin problems under the breast. My nipple is gone so I can't even imagine that part. Good luck with the rest of your treatments.
Wishing you all a nice week, it's a long weekend here, back to treatment tomorrow.
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Hi all: kber -- hope your skin holds up well.
Julie - totally get it. I got my stride after the surgery and was feeling pretty good. Now I am sore and restricted in my lifting and tired(I have always been very physically active) I find I am more bummed out now than I was after surgery. I am tired my boob hurts and I want to get back to my life. I have 7 left to go but it feels like forever. I am sure we will all get through it but damn it, it sucks.
SJ - I am sleeping in my bra too but try to let my skin air out for a while after I moisturise. I have the same pain in my breast although I find using the lotion I put in the fridge seems to help a bit. Try putting a glob of cold lotion right on your nipple (it really helps my swelling go down). I don't rub it in just let it sit there like a glob of whipcream. Great imagery my blue tipped(the dye hasn't faded) snow cone with whipped cream toppping.
I wish you all the best and an easy completion of treatment for all of us with harm to none.
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Wanted to respond to those concerned about the breath hold - it is very, very doable. You can and should practice at home before you start radiation, or even during, if you feel anxious about the breath holds. Take three deep, full breaths, then hold as deep a breath as you can. Keep a timer on how long you can hold. 35-38 seconds is the most you should need. Do it again by taking 3 deep breaths then holding. This is how my rads are delivered: one breath hold for imaging (no rads), then free breathing for several breaths, then three measured/deep breaths, then hold for 37 secs for rads, then three deep measured breaths, then hold again for rads, and done. I can hold for a long time, but my treatment is only 37 or so seconds, while I hold. The breath holds are SUPER important, because the technique is very effective at eliminating radiation from getting to your heart. The bigger breath you can hold for 30+ seconds, the better. Being relaxed while doing the breath holds helps tremendously, too.
I finished 9 of 20 (or 16 without boost) today. Whole field is internally sore & swollen/heavy, some nerve stuff is shooting around, and I'm cognitively fatigued/mentally slower over the afternoon & evening of rads, but it's all very tolerable, at this point. Skin is great, so far (mometasone & Miaderm combo). I'm cautiously optimistic my SE's will stay pretty low key. I felt pretty pummeled by surgery recovery, so this has not been as difficult, thus far (don't tell the gals over in the lumpectomy lounge!).
Trying to find current/recent research and answers about the necessity of boosts to the tumor bed, haven't located much. Here's my main question: why wouldn't 42.56 gy of whole breast irradiation be (more than) adequate to kill any possible stray cancer cells, at the tumor site and otherwise? I need my RO to really convince me of the benefits of the boost rads for my exact and specific circumstances (rather than "standard of care" party line I've grown tired of) for me to agree, at this point.
Keep at it, gals!
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GenX your stats look pretty similar to mine. I had 20 treatments, 15 were the regular ones and 5 were boosts. The boosts were a much smaller field of fire so to speak, and aimed right at my tumor bed. I was (and remain) unsure about taking tamoxifen and have shared that with my medical team, so I suspect the boosts were because of that information.
Honestly, the boosts didn't fry me any more than the previous 15 treatments. My nipple was cranky but that was already the case and since my sentinel node incision wasn't getting fried, it got a jump on healing.
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GenX thanks for the info on breath holding. I can do 37 seconds today, but my chemo-related anemia makes that much more difficult than I'd hope. Maybe in a couple more weeks, when my treatments actually start, it won't seem so difficult.
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MountainMia - my treatments were a bit different. It usually starts w/ some plain x-rays (not treatment) which are short breath holds. After that, I had two short and one long breath hold, then the machine moved to the other side of my breast and again two short and one long breath hold. I don't think my breath holds were over 30 seconds.
edj - I got the boosts because I had lymphovascular invasion (but negative lymph node). Like you, I was very worried about the tamoxifen, but it reduces my chance of recurrence significantly, so I MUST make it work. I may not take the full 20 gm daily dose and I may not take it for 10 years, but I WILL take it. I started on the 1st w/ 10 mg each night. I added an extra 10 mg on Sat morn and Mon (yesterday) morn. Strangely, the morning after I do the 20 grams, I am very slightly nauseated again after I get up. It goes away in an hour and isn't bad enough to impact what I eat. The timing of the nausea doesn't make any sense to me, but so far very doable!0 -
I had my first radiation today. It’s still warm, I assume that’s normal! Mine was very quick, Supposedly 2.5 minutes but it seemed shorter. My doctor is having me use Cetaphil not a prescription lotion. The treatment adventure has begun
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hi. I’m wondering how the process of radiation works after surgery? Like with appts with the RO and scans? Thanks!
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i just wrote a message replying to each of you but then lost it...
12/20 today (or 12/16 + 4 boosts) i do dread those boosts; my nipple will never recover after 2 lumpectomies right behind it, and to see that machine pointed right at the poor thing.. ah well. edj glad to hear it was not worse for you. genx i hope you get the answers and clarity you need. i would love to hear what they tell you.
otherwise i am right there with rudolf - haha - red as can be. no bra for me, for a month. i needed the support after surgery but not yet with rads. doing fine really... mostly just burnt and occasional shock of nerve pain.
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ucfknights - there is another post for people starting in August that you can join in on.
For me, after the lumpectomy follow-up visit, my surgeon referred me to a radiation oncologist and a medical oncologist. I also made appointments with a second of both of those so I could pick the ones I wanted to work with. In the meantime, I was doing a lot of reading and learned about breath holding to protect the heart during radiation of the left breast. The first rad onc did not think that breath holding was effective and did not do that. The second rad onc does have breath holding and I went with them.
I see that you have already done chemo. Have you met with rad onc yet?
I had the first meeting w/ rad onc, told her I definitely wanted to do radiation at her clinic. She told me how many treatments she would plan for me (15 regular plus 5 boosts). They then made appt for marking and set-up (can't remember the real name for it this minute). I did that on a Wednesday and started radiation the following Monday. At the appt where they did the positioning, etc they asked what time frame I wanted to come in. I choose late morning or early afternoon. They came back before I left with my 20 appointments on a page. The first 6 appts were at different times and then the last 14 were all at 1PM. I went in 5 days a week (except one holiday and one day when machine wasn't working).
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Hi All,
I've been lurking and reading your posts and thought I should share at this point. I finished my treatment last Friday, 8/2. I had 15 treatments with a simultaneous boost. I did not experience fatigue, but my doctor said since I had resumed my workout routine that was keeping the fatigue at bay. I've also found my appetite has returned since I've gotten over my chemo, so maybe it's the combination of exercise and protein! I started to pink up in the last week of treatments and now I have itchy red areas on my chest, in the crease under my boob and a bit in the armpit area. Managing it with Miaderm and cortisone. My biggest issue is I'm uncomfortable wearing a bra so I"m having to evaluate all of my clothing for the ability to go braless, something I haven't done since my 20's hahaha.
Hope everyone continues to do well. I"ll let you know if I start to experience any fatigue next week.
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Hi all
uc - you get your appt with your ro and then they set up a simulation appt (fake radiation to take measurements etc) that it when they do the scan (there is no contrast with the scan)
Jlall - I may be funny but you made a little poem which was awesome. I did 25/30 today, start my five boosts tomorrow. The rad nurse said I need to walk around house topless let my skin breath - I am sure the six teenagers living with me would be scarred for life.
Joyce65 congratulations on being finished rads. With regards to the bras thing since the surgery I haven't been able to sleep without a sports bra now they want booby rudolph to be free and I am opposite to you I am not comfortable without the support. Funny though before BC I hardly ever wore a bra. Hope you heal quickly and don't get the fatigue.
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Hello everyone! Just finished #16 of 20 - my first boost. I got new marks that I can't wash off (3 tattoos at the beginning). I'm getting pink and a little red; I hope these boosts treatments don't make it substantially worse. My biggest complaint is that my nipple is really sore, and my whole breast HURTS - like post surgery/pain pill/ no sleep kind of sore. Met with RO today, and he said that what I see happening on the outside is also happening on the inside. Just lots of irritation and inflammation. He said not everyone gets sore like that, but it happens. So I struggle with whether I go braless for my skin or wear my surgery support bra 24/7 for my boob
Joyce65 - So glad to hear that your workout routine is helping with fatigue. Hubby and I have been walking every day, and I do think it helps. I was really tired after work yesterday, but he pushed for a walk. We did our short route - 30 minutes; I felt like I could've done the long route - an hour, but I decided to go home and rest instead. Walking seems to be so good for me, both mentally and physically!
Hugs to all. Hope you find peace and relief today.
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Hi SJ - my first boost is tomorrow my poor boob is already really red so not looking forward to it. And like you the inside hurts. So they told me no bra for the skin and use a bra for the breast pain. So what am I supposed to do with that. So I totally get the struggle. Are you doing saline soaks? My RO recommended them. I just started doing them last night so will see how that goes. Hope your pain subsides and you can get some sleep.
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GiddyupGirl,
I don't know about saline soaks. RO hasn't mentioned them, and it's not in any of the paperwork they sent home with me. Let me know what it is and how it works for you. Hugs to you!
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Just finished 17/25 today. My skin is getting a bit irritated, but nothing unmanageable yet. I've definitely noticed an uptick in fatigue. I'm fine in the morning and through most of the day, but two evenings in a row now, I've simply *had* to go to bed by 7:30. I've pretty much slept through the night and both mornings I've woken up fine. 8 more of these babies - I can do that. No boosts since I have no tumor bed after my mastectomies, so at least there's that.
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Joyce65, Giddyupgirl, SKWhitten - I am also in this "bra/no bra" club. Muscle pain wakes me up at nights. So far I've chosen to sleep without bra and to wear surgical bra during the day. I've done unilateral mastectomy, and my healthy boob is looking forward for lifting surgery once my expander is exchanged. In a meanwhile I don't think my (or any) wardrobe will allow me to go braless no matter how hard I try. So far it seems that even if I try and don't wear bra at home, muscle pain and swelling are more intense. I am only at 11/25, not sure what I will be doing in a couple of weeks.
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Hi SJ - my RO just told me about them and gave me the instruction sheets. It is for when your skin gets red and irritated or blisters or peels. (my just started over the weekend and wow is it painful. Haven't had a sunburn since I was 17. Anyway have done a few soaks and honestly if feels good while you are doing them,even helped with the breast pain a bit. You boil one litre of water with 1.5 - 2 teaspoons of salt, stir well soak a clean cloth with it and lay it on your skin where it is red dry or open and leave it for 10-15 mins. Then air dry . If you are interested I can post it if allowed or pm it to you (all the instructions from my hospital) and you can show it to your RO or techs or try it. (BTW I keep my salt water in the fridge so its nice and cold when I use it and it sucks the heat out of my poor boobie) Just let me know. As always hugs and good luck.
Julie sorry to hear about the muscle pain (I get it, mine contracts across my chest like its trying to squish me) Ask your techs if there is anything they can suggest and I'll ask mine we can compare notes. With regards to clothes how about some long flirty scarves arranged just so.
Kber you can so totally do this, might change your handle to slumber instead of kber (just teasing) sleep however long you need.
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I am on the August start board but thought I would share here that at my appointment with RO Monday, when we discussed the boosts, he said that studies have shown that the boosts decrease recurrence by an additional 10%. That seems pretty high to me, and I haven't read the study of course, but it made it sound worth it to me. Also, I purchased some new bras and don't know how they are going to work as I haven't started RT yet (I am fairly small chested). They were advertised as "cool comfort", which I found funny given the "heat" generated by the rads! They were cheap so if they don't work I haven't lost much. I did get them in a size larger than I would have otherwise.
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Welcome loiswb - sorry you have to be here but these women are totally awesome in every way and are so supportive. Your's was a great post I didn't know that and as I am about to start my boosts (trust me after 25 rad sessions really wasn't sure I could keep going) that 10% is a great incentive. Good luck with your treatments may your skin stay intact and your discomfort minimal.
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Debatable, but here's a thought about where "boob" came from:
If that's the case, I think I will be a Peob before I'm done with treatment.
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that is fantastic thanks for the laugh
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Dorothy B - Thanks. I ended up layering 1% cortisone cream and Aquaphor after the cortisone soaked in. I did that on my nipple too. It helped with the irritation.
I am glad to say that I am done with rads! I had my last treatment today. As I was leaving they told me to ring the bell. I was surprised at how emotional I got.
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Shadow63, congrats on finishing rads!! I know what you mean about the surprising amount of emotion. I rang the bell after finishing chemo, even though I told them I still have rads to do. (They said, RING the BELL!! We celebrate every chance we get!) So I rang the bell, and both my husband and I cried, and it surprised both of us.
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Shadow63, congratulations on finishing this part of the journey!
Prehistoricmom -
for the pictureSJWhitten - since the booklet i was given in the hospital appears online, I think it's ok to share it here? Saline soak is on pp.7-8 - click here
Giddyupgirl- I saw a doctor today, since my breast is getting swollen, I was told that ideally I should be wearing surgical bra during the day plus start physio. They suggested using proshield cream (I took a sample to try and it feels similar to Aquaphor) to prevent friction and then continue current skincare when I am not wearing the bra. I will try only using barrier cream under breast and see if it helps. They also told me to start doing saline soaks even though I am just a bit pink, to prevent further skin damage. I am glad I bought a very simple dress for my SIL's wedding which is still 7 radiation treatments away, first i was afraid of my skin colour, and now I will be probably wearing the dress with surgical compression bra
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