November 2018 Starting Radiation
Comments
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Hi everyone - so good news and not so good news on my part. Good news - I just got done with the 25 full breast and axillary node radiation treatments today, yay! I've got 5 more to go, the boosts that some of you have been through / are going through already. Not so good news however is that I found a blister on the bottom of my right breast this morning. So my hopes of skating through this with no side effects at all have been dashed. I think it might be because I've been so good that I've still been wearing underwire bras, and maybe that rubbed up and my skin is more sensitive than I thought, and caused the blister. It already popped (on its own) and is just like a scratch now, and stings a little when I put aloe on but not so bad in the grand scheme of things.
I see the radiologist tomorrow as they do a skin check before boosts to see if you need a 'break' before continuing - which is good news for anyone experiencing earlier on side effects, that they DO give you a break if you need it! I imagine for me I would just continue, but we'll see!
Spoonie - OMG! Well at least you know what it is. I guess that also explains why you said the hair in your underarm hasn't grown back? What's the next step with this? Physical therapy? Herbs and healing? Sending healing vibes your way. And we all shave our underarms, maybe a silver lining that you won't have to now? I'm just trying to think of any positive from this!
Anyways, here are today's pics (fresh from today too!) for Dwisely, Spoonie, egregarious and all you ladies... the pups are smiling to help me celebrate the 25 MAJOR radiation treatments being done! Woot!
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PebblesV, I’m kind of in the same place as you. Finished the whole breast portion today (I only had 15 hypofractionated though), and start 5 boosts tomorrow. I’m a bit sore under the breast, and was thinking the same thing about wearing my regular underwires. I don’t see any skin breaks or blisters yet.
Love the doggos! Here’s mine
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Pebbles and appyfan, thanks for the for the doggy therapy! 💓
Pebbles, liberate yourself from that loathsome underwire. I've been wearing a cami, but in all fairness, I'm also wearing shapeless sweaters on top so it doesn't matter. So sorry you got a blister though, ouch!
Appyfan, I'm also on a hypofractionated schedule, 16 tx, no boosts.
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Mine... This is Dart.
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OMG I am loving the pups taking over this forum!
AppyFan - we will be done at the same time, here's to the home stretch!
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Congrats ladies who have been able to return to underwire land. Haven't worn one since Aug 29, the night before my surgery. I was told by both SO and RO to not even attempt underwire for at least 6 months after my lump/node biopsy. And as of three weeks ago, my REhab PT joined the crew due to the breast lymphadema and pectoral radiation fibrosis. Even if not for their forbidding them, I know due to pain and SEs, there's no way I could've tolerated them at all. I missed them a ton at first but now having lived basically in my compression sports bras since Aug, I barely even think of them these days. Maybe in the spring I'll get the ok to go back....a girl can wish!
Yay for all the pups! They make my day! Thanks ladies!
Pebbles -- the dermal fibrosis/hair follicle & sweat gland atrophy in the middle of cleavage land. No biggie. Hope it will heal ok and PT will help loosen the scarring. And yes, I haven't had any hair regrowth in my armpit, but accoring to my RO, that's normal for some ladies w/axillary rads. And you're right, def glad to have the mystery solved. My mind can stop worrying that it was another auto-immune issue to add to my list or something cancer-ish. Good luck with your RO visit and the remaining boosts! May they continue to go well for you!
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Treatment 13 of 25 today, so officially past the half-way mark, and today was the first time the RO noticed just the barest hint of a side effect -- teensy, every-so-slightly pink dots that are only visible to me under the strong lights in her office. No discomfort from them at all. Not yet, anyway. Slathering on Miaderm, calendula, and aloe daily.
I feel so bad for those of you who are suffering so much through this. Sending healing thoughts your way.
And thanks again for all the poochie pixes! It makes me happy just to look at them.
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Hi ladies,,Come to check if anyone is suffering as I am after 25 sessions with highest gray they can give. That's what they told me, but never asked for the number.
My last was 11/23 and I struggled with doing the last 2. I've been bed bound since with major burns blistering and peeling. The pain was unbearable and today finally a little better. Fried up, it's insane and I agree that in this day and age there should be something more humane instead of frying us.
Idk if pictures are allowed. I'll share, if not allowed my apologies to monerators and pls remove.
Just keep In mind when done the worse is yet to come. Perhaps depends on grays for sure. But what I'm going through is just well wow.
Good luck and take care of that skin while doing rads which in turn will help with after affects.
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Idkidk, love your user name! I'm so sorry this happened to you! My radiation effects are uncomfortable, but no where near the degree that you have suffered. Hugs.
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IDKIDK -- I experienced much the same my friend, with skin "disappearing", raw, and oozing in places during treatment and after it ended. I'm so sorry you're going through this too. It's so very difficult.
Is your team giving you pain meds, antibiotics, or wraps to help you cope with these SEs?
Do you see your RO each week?
What do they say about your skin and follow-up care? Are you seeing a Cancer Rehab specialist or PT?
I was given these aids during the last 2 weeks of my rads and I know I couldn't have made it through it without them. "Boob Lasagna" (Oct 22 post) coupled with AloeVesta was the saving grace! LOL. They discussed having me take a break but thankfully that last weekend my SEs didn't increase for some odd reason. I think that last week I was in tears on the table off and on and thankfully the techs were emapthetic and consoling.
You made it through it. It does end, but like you said, often the SEs increase or continue after completion. Hang in there.
Keep us posted and you're in my thoughts.
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IDKIDK - I'm SOooo sorry this happened to you. Spoonie is asking all the questions I would ask so I won't repeat them here, just sending you and hopes that you will heal up soon, and that it can hopefully only get better from here. My only addition to Spoonie's questions would be do you have 100% pure aloe vera gel and does that / can that help? I remember when I got the worst sunburn I'd ever had in college that all I used was aloe vera gel.
What is the highest gray that can give? I'm 26 sessions in and no where close to that, met with the radiologist today who actually said my skin looks better than most at this stage in. I *think* mine was the standard 200 centigrays per day.
Sending hugs and healing to all, and extra healing to IDKIDK.
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Does anyone else know their grays? I'm doing the hypofractionated schedule for a total of 42.5 grays. I thought the standard was around 50.
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Wised, my plan is 15 hypofractionated for a total of 40.5 gy, plus 5 boosts which total 10 gy, so my total exposure is about 50 gy. I just started the boosts today. Kinda scary. There’s an attachment to the machine that goes very close to my chest, and it’s aimed straight down instead of at an angle like the whole breast treatments were. My tumor bed is right at the edge of my breast, kind of in my cleavage area. So 1)closer to my heart, even though it’s right breast, and 2) how the heck are they not going to zap the crap out of my lung?
My RT said it’s electron instead of photon, and “very superficial” compared to the whole breast treatments. What little I’ve read about electron vs photon bursts wasn’t comforting, but frankly the reading material was over my head.
When I had previously brought up the possibility of lung damage, my RO said that there was roughly a 2% chance of that, vs a 30% chance of local recurrence if I refused rads. So, looking on the good side, I have very minimal skin issues (just light red-no breaks, itching or pain), and have only now gotten some fatigue, but still able to go to work and get stuff done at home. And only 4 more to go
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Hi Wised,
That sounds like what I'm getting, for the basic rads without boosts.
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Wised - I had a total of 52 greys. 42 of which were the daily RADs. My boosts were a total of 10 greys.
Appyfan - Good luck with your last 4! Hope all goes smoothly. As for not zapping your lung, it's like magic. They do crazy stuff with those beams and programming. Way over my head but I trusted my RO completely with her diagrams and explanations. Hang in there. You're almost done!
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Here's what BCO states about amounts of radiation given for treatment:
https://www.breastcancer.org/treatment/radiation/types/ext/expect/amount
The amount of radiation you receive to the breast area depends on factors such as:
- the size of the cancer
- the surgical margins of resection
- the "personality" of the cancer
- whether lymph nodes were involved
- the type of surgery you had
Your doctor will prescribe a total dose of radiation. The total dose is broken up into daily doses, which are also called fractions. The basic unit of radiation is called a rad or centiGray. Generally, you will receive 180–200 rads or centiGrays during each daily session:
- For radiation to the whole breast and/or lymph node areas, the usual total dose is about 4500–5000 centiGrays over 5 weeks. Your doctor may then recommend an additional 1000–2000 centiGrays over 1 week delivered as a boost, targeted to the area where the tumor used to be.
- Partial-breast radiation with external beam or internal radiation usually involves a total dose of 3400 centiGrays given over 1 week.
--------Hypofractionated whole breast radiotherapy: current perspectives
2015Abstract
Adjuvant radiotherapy (RT) is an important part of breast cancer management but the dose and fractionation schedules used are variable. A total of 50 Gy in 25 daily fractions delivered over 5 weeks is often considered the "standard" adjuvant RT prescription. Hypofractionated regimes such as 42.5 Gy in 16 daily fractions or 40 Gy in 15 daily fractions following breast-conserving surgery have proven to be equally effective and achieve similar or better cosmetic and normal tissue outcomes for both invasive and in situ diseases and when treating the regional nodes. Hypofractionation is more convenient for patients and less costly. However, certain patients at higher risk of RT late effects may benefit from a less intense, even more extended fractionation schedule. This review describes the indications for whole breast hypofractionated adjuvant RT for patients with breast cancer following breast-conserving surgery and proposes that hypofractionation should be the new "standard" for adjuvant breast cancer RT.
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Hi Dwisely / Wised - I found this useful article on this site: https://www.breastcancer.org/treatment/radiation/t...
It sounds like I'm getting the max, 200 centigrays per day for 5 weeks for 50 grays in the regular sessions, then another 200 centigrays per day for the final boost of 20 grays. I think for me they are doing the max because I had cancer in 2 sentinel nodes so they are doing the max rads on the axillary nodes too just in case.
I hope that helps! I did ask them about the amount, plus I'm sneaky and there's a computer in the room and I checked my info, and that's when they told me 200 centigrays per day.
If I thought too much about it prior, I probably would have worried more. But here I am 26 sessions in and the doc says my skin is holding up even better than he's seen with those who fare well, so I'm just trying to stay hopeful that it continues. I know that I'm in the toughest weeks where even those who haven't had side effects start to see them so I'm wary but positive!
AppyFan - I agree on that attachment! Luckily they gave me fair warning about it so, knowing what to expect, it was less intimidating, but it does feel way more like you're in this 'machine' with that thing so close to the breast! I'm just glad it's fast. I asked the radiation therapist of being this close meant we'd start to see some more serious side effects, but she kept reassuring me the boost is 'gentler' - even though technically it's the same grays in a more targeted spot... so I hope she's right.
Trying to stay positive in this final stretch!
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I have been catching up on the posts and am sorry to hear about the troubles for Spoonie and Idkidk as well as others with side effects starting to show up. I am 18/33 as of today. It seems to be going by fast, but not fast enough. My breast is tan and I can agree with the others on the “headache” in the breast. I have some areas with raised bumps thatare red and slightly itchy. RO prescribed some Silvadene to help with itching and irritation - I’ll pick that up tomorrow. Overall not too bad yet, but the fatigue is picking up. Slather on ladies, almost there.
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28 whole zaps down, 5 boosts to go. The skin on my collarbone is very happy to say goodbye to the worst of it. I hope - I know it can still cook on its own for a few weeks. I feel like a microwave casserole that continues to cook from the inside after the oven is off.
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Hi Alice,
Way to go on finishing your regular rads! Just the boosts and you'll be all done. I've heard that the part of your breast that is not in the boost can start healing during the next few days. Hope that is the case for you.
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15 days since the last one and my skin is finally looking less tan. Still a couple of shades different but its better then when it was when I ended.
The rash in my armpit it looking better too. Thank god.
I really give your girls that have more then 16 treatments a lot of credit! I only had 16 and that was enough for me.
Keep your chin up, hopefully it will all be behind you soon!
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thanks for explain and sharing info about greys and how much is normal over the coarse of treatments. Im over 5k during normal 28 treatments than 1k for my 5 boost treatments. Skin is a little pink. And Im noticing tingling in hand tonight for the first time in awhile. Also i have cording, And completed PT before radiation. But now noticed cords are tight bcuz i get a pain signal (reality check) when I reach for something. Honestly, Im getting burned out on this yoyo of treatments heal/back to treatments .. oh it might be fatigue kicking in..lol
16 down and 17 to go..slather, drink and repeat...
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Thanks, Egregious. What I'm really looking forward to is wearing a bra that isn't ink-stained! I have one designated cheap one for wearing to rads and out in public (just supportive enough to disguise the unevenness), and one for around the house. I may burn them for a different reason than the bra-burning from a half century ago.
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so I was to quick to talk. Ive got a rash as of this morning started at my collarbone. Went to rads and they handed me Radiaplex Rx gel to slather on all weekend. Ugh. Hoping this heals over the weekend. Wish me luck, but dont cross ur fingers..(giggles )
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Urdrago, don't get your hopes up on weekend healing. Wish it worked that way, though. I just finished my regular zaps and started boosts today. My collarbone is relieved that it won't get zapped anymore. I'll let you know when it starts fading since I'm quite a ways ahead of you.
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Udrago71, I've been getting slightly worse on the weekends. My skin is holding up, however. Slather it all on in layers.
Alice, yay for you! Congrats! I also love your tagline about life. I'm feelin the same way!
Only 2 more tx for me! I am red AF right now though. A little rashy as well... Just hold up a few days more skin!
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Alicebastable, Im trying to stay positive! The name of the tube is RadiaPlex RX gel they handed me is for skin irritations and 1st &2 nd degree burns. Forget a bra. ,my cotton shirt is bothering my skin tonight. So Im taking aleve for discomfort. Apprehensive about the upcoming week.
If its still bad monday i might consider tank tops verses bras at work. Clothing layering now that its winter so hopefully nobody will notice..
Slather. Drink and repeat..
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I've been wearing men's T-shirts ("wife-beaters") under a comfortable bra at home. I tried that going to rads, but the bras I wear there pushed the fabric into my skin and it felt nasty peeling it away. I read somewhere here that some women use nursing pads to protect their breast skin. I can't easily go braless, I'm pretty cockeyed now, plus the gravitational pull and heat irritates the reddened skin on my underboob.
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Spoonie - I've never heard of the fibrosis, but I'm glad it isn't anything worse! Wised - hard to be excited about moles, but yay, glad it's nothing more!
It's kind of crazy the damage we do to our bodies in order to beat this thing!!
18 of 25 done! Fatigue is definitely becoming an issue for me. No where close to chemo fatigue, but by 7:30, I'm ready for bed. I do have to say that I'm sleeping better than I have in months, though. I'm grateful to only be burning a little so far. Everything I read about using the bolus had me scared! Any other suggestions for the itchy rash other than cortisone cream?
Anyone else having trouble finding your Christmas spirit this year? I'm usually listening to Christmas music and decorating by Thanksgiving and it's just not there this year. Gonna have to get motivated for my kid's sake!
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Hi Everyone,
just an update, its been 2 weeks since the last whole breast and 1 week since I finished boosts. My skin almost looks normal again, it just looks tanner and I can feel roughness where the rash was (bumps are receding), but you can't see any bumps or rash anymore, also no pain or tightness at this time and energy levels back to pre rads. For me the absolute worst time was during the last 2 whole breast and and like 3 days afterwards. It felt like it was burning and aching from the inside and nothing helped the itching on the outside, I also felt almost like I had the flu, no energy and body aches. i just wanted to reiterate that what helped me the most at that point was taking advil and benadryl at night and slathering on the emu oil, skin always looked slightly better in am. I'm still using the emu oil and i feel it has helped everything heal really well. One of my doctors said she has had other patients swear by it too. I had all the risk factors for a more severe skin rxn (chemo, fair skin, larger breasts), yet I had better than average rxn (according to my doctors), I am going to post some pics. Hope this helps, enjoy the weekend off, sending healing vibes...
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